Trigeminal Neuralgia Gone Wild and New Neurologist Findings

That says it all.  The occipital neuralgia on the side of my head has turned from numbness to pain, and in turn, my TN has gone full force on my right side now.

Interesting to note here that my new neurologist says my peripheral neuropathy is GONE!!!!  WTH?  Gone?  Gone?  Gone where, lol?

Gone to nerve compression syndromes systemwide!  He dx'd me with carpal tunnel in my right hand, tarpal tunnel in my left foot and ulnar neuropathy in both arms.  Oh yeah....good one!  LOL  I'm being sent to physical therapy in a couple days to teach me how to squeeze a ball the right way I guess.  Did I mention that in my sacroilitis xrays there was an incidental finding of a 5mm vertebrae slip?  Oh boy, with the TN out believe you me, I'm not feeling the pain from anywhere else but my FACE and JAW and the constant ice pick in my ear right now.  Being sent for PT for THAT too eventually..this doc takes a little longer to get going, lol.  Neuro wants to dump me as fast as possible...haha

On the bright side, at least I hope its bright...my neuro is sending me to a new orthopedic / neuro surgeon for my cervical spine impingement and neural problems.  Interesting and hopeful.  This time I'm bringing hubbie for support..I'm so sick and tired of incompetence...just blown away with it that I need help.

It's been guessed at that the nerve compressions are coming from inflammation in the blood vessels, which would account I suppose for the high platelets and wbc's, the low rbc's and the immune complex interference in my blood labs for ANA's.  Wish I knew folks, wish I knew.  I'm on 60mg of prednisone now for this flare and doubled my cellcept to 2000mg a day and up to 1000 mg a day of tegretol (an anti seizure med) for the Trigeminal and geniculate and occipital neuralgia plaguing me.  My pain is about a constant 4 or 5 with bouts of extremeness at about an 8 that last anywhere from a few minutes to an hour of HORROR-IFIC pain.

Feel like some brain fog is back, but then its the holidays and lots to do and lots of loss of sleep could be part of it..btw, if your reading this: Happy Holidays!  Much love and luck and health...Gentle HUGS... Julie

ps: here's some info on vasculitis and arteritis and nerve compressions:
From www.healthblurbs.com:

Vasculitis Blood Vessels Inflammation Causes Systemic, Organ Symptoms for Medication Treatment

Vasculitis is a condition wherein your blood vessels become inflamed, making it difficult, sometimes impossible, for life sustaining blood to make it through. This inflammation is caused by your immune system erroneously attacking its own arteries, veins and capillaries.
Undoubtedly, this type of attack can lead to some very serious health complications.
There are two classifications of symptoms you may experience with vasculitis, those affecting you generally (systemic) and those affecting a specific organ or body system. Common systemic signs indicative of body wide blood vessel inflammation include:

• fever
• weight loss
• appetite loss
• generalized aches, pains
• fatigue, weakness, paralysis
• painful chewing, swallowing
• confusion, forgetfulness ~ dementia

Symptoms for organ or system attacks on vessels causing their inflammation:

• sinus infections
• nose, mouth ulcers
• muscle ~ aches, pains
• joints aches ~ arthritis
• eyes ~ blurring, double vision, lost vision
• ears ~ chronic middle ear infections, hearing loss
• gastrointestinal tract ~ abdominal pain, bloody diarrhea
• brain ~ headaches, confusion, changes in behavior, strokes
• lungs ~ shortness of breath, chest x ray similar to pneumonia
• skin ~ spots, petechiae, splotches, bruises, hives, can be itchy or painless
• nerves ~ numbness, tingling, weakness, loss of feeling, strength, shooting pains in hands, arms, legs, feet

Although the cause for systemic or organ vasculitis is ofttimes unknown, it sometimes is:

• side effect of infections
• allergic response to a medication
• higher incidence for those with hepatitis B & C viruses
• associated with blood cancers ~ leukemia, lymphoma,myeloma
• linked to autoimmune system diseases ~ lupus, rheumatoid arthritis, scleroderma

Most cases of vasculitis are treated with prescription medications in an effort to put the brakes on your immune systems inflammatory responses. The two typical drugs used as treatment for inflamed blood vessels are:

• cytotoxic medication
• corticosteroid medication

There are many disorders classified as types of vasculitis, differing in terms of population and which organs affected, like:

• Rheumatoid Vasculitis ~ occurs with rheumatoid arthritis
• Microscopic Polyangiitis ~ often affects the kidneys, skin, nerves
• Churg-Strauss Syndrome ~ lungs, skin, kidneys, heart; asthma history
• Central Nervous System Vasculitis ~ affects brain, sometimes spinal cord
• Buerger’s Disease ~ affects blood flow to hands and feet; more likely in smokers
• Behcet’s Disease ~ often younger of Mediterranean, Middle Eastern, Far Eastern descent
• Cryoglobulinemia ~ lower limb rash, arthritis, nerve damage; those with lymphoma, hepatitis C
• Polyarteritis Nodosa ~ commonly affects the kidneys, skin, nerves; 30-50 age group, men more likely; associated with chronic hepatitis B, hairy cell leukemia
• Polymyalgia Rheumatica ~ large joints (shoulders and hips); along with giant cell arteritis
• Takayasu’s Arteritis ~ affects the aorta & its branches; Asian women under 40
• Wegener’s Granulomatosis ~ upper respiratory tract (nose, sinuses, and throat), lungs, kidneys; middle aged plus
• Giant Cell Arteritis ~ headache, fever, blurred vision, pain in the jaw, shoulders, hips; affecting adults over 50; Scandinavian higher risk
• Henoch-Schonlein Purpura ~ commonly affects the skin, kidneys, joints, stomach; often found in children following upper respiratory infection

The future for those suffering from vasculitis varies greatly. Treatment is often effective if diagnosed early and your “out of control immune response” tackled with medication quickly.
Vasculitis may disappear, go into periods of remission or be chronic. In some severe cases, it can lead to disability or death.
As for now, there is no evidence supporting a specific diet to combat an immune system gone wild. However, as with most health issues, following a healthy diet plan and regular exercise is encouraged.

AND on nerve compressions and arteritis or vasculitis:
Medicine.net link to nerve compression info:  http://www.medicinenet.com/pinched_nerve/article.htm
and on vasculitis causing nerve compressions from the National Institute of Neurological Disorders and Strokes:

Vasculitis Syndromes of the Central and Peripheral Nervous Systems Fact Sheet

What is vasculitis?
How does vasculitis affect the nervous system?
What are the symptoms?
How are these syndromes diagnosed?
What are some of these syndromes called and how are they treated?
Are there additional vasculitis disorders that can cause neurological symptoms?
What research is being done to better understand these syndromes?
Where can I get more information?

What is vasculitis?

Vasculitis is an inflammation of blood vessels, which includes the veins, arteries, and capillaries. Depending on the type, vasculitis can affect blood vessels of any type, size, or location. Inflammation occurs with infection or is thought to be due to a faulty immune system response. Dysfunction may occur due to the inflammation itself or over time as the blood vessel walls swell, harden, thicken, and develop scar tissue. This narrows the passage through which blood can flow. As the condition progresses, it can slow or completely stop the normal flow of blood.

How does vasculitis affect the nervous system?

Vasculitis can cause problems in any organ system, including the central (CNS) and peripheral (PNS) nervous systems. Vasculitic disorders, or syndromes, of the CNS and PNS are characterized by the presence of inflammatory cells in and around blood vessels, and secondary narrowing or blockage of the blood vessels that nourish the brain, spinal cord, or peripheral nerves. Any type or size of blood vessel may be involved—arteries, arterioles, veins, venules, or capillaries.

What are the symptoms?

Avasculitis syndrome may begin suddenlyor develop over time. Symptoms include:

• headaches, especially a headache that doesn’t go away
• fever
• malaise (feeling out-of-sorts)
• rapid weight loss
• confusion or forgetfulness leading to dementia
• aches and pains in the joints and muscles
• pain while chewing or swallowing
• paralysis or numbness, usually in the arms or legs
• visual disturbances, such as double vision, blurred vision, or blindness
• seizures, convulsions
• stroke or transient ischemic attack (TIA, sometimes also called a “mini-stroke”)
• unusual rashes or skin discoloration
• problems with the kidneys or other organs

How are these syndromes diagnosed?

A doctor who suspects CNS or PNS vasculitis will gather a comprehensive medical history of the individual, perform a physical examination, order laboratory tests (primarily blood tests), and recommend any other tests that seem appropriate. Electromyography and nerve conduction studies identify blocks and loss of nerve supply to muscle due to vasculitic nerve damage.
Diagnostic imaging of the brain blood vessels such as magnetic resonance or computed tomography angiograms can sometimes identify narrowing in the larger blood vessels. Direct injection of a contrast dye into brain blood vessels may be needed to look for narrowings consistent with vasculitis in medium-sized brain arteries. 
However, the diagnosis of vasculitis often requires evidence that there is ongoing inflammation. Inflammatory cells may be found in the spinal fluid. Often there is a need to conduct a tissue biopsy to examine blood vessels under a microscope. In some cases a brain biopsy may be necessary to evaluate the compromised tissue. A definitive diagnosis is important because the treatment usually requires powerful immune-suppressive drugs. In addition, it is important to make sure that an infection is not causing the inflammation.

What are some of these syndromes called and how are they treated?

The diagnosis of a CNS or PNS vasculitis disorder will depend upon the number of blood vessels involved, their size, and their location in the CNS or PNS as well as the types of organs involved. Although these disorders are rare, there are many of them. Some of the better understood syndromes are:
Temporal arteritis (also called giant cell arteritis or cranial arteritis)Temporal arteritis is a common chronic inflammatory disease of large blood vessels occurring primarily in people 50 and older. It most often involves narrowing and sometimes blockage of the arteries that bring blood to the brain. Doctors will diagnose temporal arteritis if at least three of the following symptoms are present:

• new, severe headache
• visual disturbances
• pain in the jaw or tongue when chewing or swallowing
• tenderness in the temporal arteries (the arteries that run across the temples on either side of the head) or the scalp 

Fever, weight loss, and neck or muscle pain can occur, usually in the early phase of the disease. Individuals may also have arthritis; carpal tunnel syndrome; fatigue; and weakness, paralysis, or numbness in isolated muscles. The disease is usually limited to one to two years and is rarely fatal. 
Abrupt but reversible blindness is the most dramatic complication of temporal arteritis. About one in ten individuals with temporal arteritis will develop blindness in one eye, preceded by visual disturbances.Once one eye is affected, three out of four individuals will go on to lose vision in the other eye, most in two weeks or less. 
The main goal of treatment for temporal arteritis is to prevent blindness. Most individuals respond well to steroid drugs, such as prednisone and methylprednisolone, but they must be given promptly and carefully monitored. Long-term use of steroids can cause harmful side effects, such as collapsing vertebrae, muscle pain, diabetes, cataracts, and infection.
Primary angiitis of the CNS (granulomatous angiitis)The symptoms of this rare disorder develop slowly. Symptoms include headache and encephalopathy-like symptoms such as dementia and tremor. Stroke, TIA, and seizures can occur. Definitive diagnosis may require brain biopsy. Treatment includes steroid and immunosuppressive drugs, such as prednisolone and cyclophosphamide. It is fatal if left untreated.
Takayasu’s diseaseThis disease affects large arteries such as the aorta, which brings blood to the arms, legs, and head. It primarily strikes individuals of Asian descent and predominantly affects females under the age of 40. The main symptoms are fainting and visual disturbances and it may also cause stroke. Although the disorder is serious, the prognosis is positive: more than 90 percent of those diagnosed with Takayasu’s disease survive beyond a decade after diagnosis. Steroid drugs are used in the early phase of the disease, but some individuals become steroid-resistant and have to switch to cyclophosphamide or low-dose methotrexate.
Periarteritis nodosaThe onset of this rare and serious disease is generally between the ages of 40 and 50, but it can occur at any age. Men are three times more likely to develop the disease than women. Symptoms can mimic those of many other diseases, but the most common initial complaints are fever, abdominal pain, numbness or pain in the legs and limbs, weakness, and unexplained weight loss. As the disease progresses, the kidneys may fail and high blood pressure may develop rapidly. Certain drugs (for example, those in the sulfa family), vaccines, bacterial infections, and viral infections have been associated with the onset of the disease. Damage to the PNS with neuropathy is more common than damage to the CNS, but if the disease does involve the CNS, damage to brain and spinal cord tissue can occur. 
The disease is treated aggressively with high doses of steroids and immunosuppressive drugs such as cyclophosphamide. Eighty percent of individuals who receive appropriate treatment are alive five years later. Untreated disease is often fatal, ending in heart failure, kidney failure, or failure of other vital organs.

Are there additional vasculitis disorders that can cause neurological symptoms?

Other vasculitis syndromes include Kawasaki disease, which can cause stroke or encephalopathy in children; Churg-
Strauss syndrome; Wegener’s granulomatosis; systemic lupus erythematosis; scleroderma; rheumatoid arthritis; Sjogren’s syndrome; and Behcet’s disease.

What research is being done to better understand these syndromes?

The National Institute of Neurological Disorders and Stroke (NINDS), a component of the National Institutes of Health (NIH), and other NIH institutes conduct research relating to vasculitis syndromes in laboratories at the NIH and also support vasculitis research through grants to major medical institutions across the country.
The NINDS supports The Vasculitis Clinical Research Consortium (VCRC), a network of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research and improving the care of individuals with vasculitis, including Wegener’s granulomatosis, microscopic polyangiitis, Churg-Strauss syndrome, polyarteritis nodosa, Takayasu’s arteritis, and temporal arteritis. The medical centers are located at Boston University School of Medicine, Cleveland Clinic Foundation, The Johns Hopkins Vasculitis Center, and Mayo Clinic College of Medicine. The Consortium’s internet site provides information about clinical research and clinical trial opportunities and helps individuals connect with expert doctors and patient support groups.

 Where can I get more information?For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:
BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
Information also is available from the following organizations:

American Autoimmune Related Diseases Association 22100 Gratiot Avenue Eastpointe, MI   48021-2227 aarda@aarda.org http://www.aarda.org Tel: 586-776-3900 800-598-4668 Fax: 586-776-3903	National Organization for Rare Disorders (NORD) 55 Kenosia Avenue Danbury, CT   06810 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291
National Eye Institute (NEI) National Institutes of Health, DHHS 31 Center Drive, Rm. 6A32 MSC 2510 Bethesda, MD   20892-2510 2020@nei.nih.gov http://www.nei.nih.gov Tel: 301-496-5248	National Institute of Allergy and Infectious Diseases (NIAID) National Institutes of Health, DHHS 6610 Rockledge Drive, MSC 6612 Bethesda, MD   20892-6612 http://www.niaid.nih.gov Tel: 301-496-5717

"Vasculitis Syndromes of the Central and Peripheral Nervous Systems Fact Sheet," NINDS. Publication date July 2011. NIH Publication No. 11-5596
Back to Vasculitis Syndromes of the Central and Peripheral Nervous Systems Information Page

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Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892


NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.
All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
Last updated February 7, 2012

Sacroilitis and Ankylosing Spondylitis and Uveitis, oh My!

Only two conditions have ever really moved me to be pissed off.  The first was over ten years when I was diagnosed with diabetes.  The second is having Ankylosing spondylitis and sacroilitis.  The pain is just awful.  A good 8 on the painscale, if you take into account my trigeminal neuralgia and nerve compressions.  Diabetes, Lupus, hypertension, PCOS, none of it hit me as hard.  I think because this feels permanent.  Difficult to manage.  Idk.

The inflammatory pain is outrageous.  I had my first flare of it about a week ago and had difficulty walking.  The pain woke me up at night.  I was so stiff in the mornings I'd wake up and yell.

Here's how it all went.  I had blood in my stool.  I decided to wait to see if it happened again before I called my doctor.  It didn't., but my stomach was upset and I knew I had gastritis or something like that.  It subsided, no big deal.  Then came the itchy watery hurting stinging in my eyes.  By the time I did get to my GP I had uveitis in both eyes.  Then came the hip, lower back near the tailbone and pelvic pain.  I could literally feel the inflammation.  Tender and warm.  I also noticed before it came on I had some malaise, a low grade fever; all similar to a lupus flare but with the hip and lower back (and tailbone area) pain.  I'd been having bouts of this for the last three months or so.  Yelping in pain at emptying the dishwasher and thinking I sprained my tailbone and had bursitis in my hips.  Getting inflammed and making my husband check it out..."look look it's all puffy and hot"...but this was my first real bad flare of it.

My grandmother had inflammatory arthritis.  She was dx'd with anklyosing spondylosis and her bones were fused together in her lower spine.  She was completely hunchbacked.  I really feel for what she must have gone through now.  No wonder she valued her percodan and valium.  Holy cow, it's a hell of a disease.  No wonder she needed her walker.  I've been following in her footsteps with my lupus, why not with this too?  Oy Vay!

So I notified my rheumatologist by fax that I will be needing the further testing of ct scan and mri stir and blood ran for the gene that helps determine if I'm prone to the disease for an official dx and treatment regimen.  Till then my GP has me on muscle relaxers if needed and I'm already on pain meds and my pain mgmt doc has been contacted to start me on cortisone in the sacroilic joints.

I'm not happy but it is what it is.  I will manage.  There are alot of lupies with AS, I'd love to meet you...write me at jujubeee714@msn.com if you see this post.  It's autoimmune (what a surprise)..ai'conditions like to hang in packs as you know.

Here's some info on ankylosing spondylitis and sacroilitis.  I hope you NEVER have to find out for yourself what it is and I certainly pray and feel for the children diagnosed with this.

Sacroilitis:  (from mayoclinic.com)
Sacroiliitis (sa-kro-il-ee-EYE-tis) is an inflammation of one or both of your sacroiliac joints, which connect your lower spine and pelvis. Sacroiliitis can cause pain in your buttocks or lower back, and may even extend down one or both legs. The pain associated with sacroiliitis is often aggravated by prolonged standing or by stair climbing.
Sacroiliitis has been linked to a group of diseases called spondyloarthropathies, which cause inflammatory arthritis of the spine.  Sacroiliitis can be difficult to diagnose, because it may be mistaken for other causes of low back pain. Treatment of sacroiliitis may involve a combination of rest, physical therapy and medications.
The pain associated with sacroilitis most commonly occurs in the buttocks and lower back. It can also affect the legs, groin and even the feet. Sacroiliitis pain can be aggravated by:

• Prolonged standing
• Bearing weight more on one leg than the other
• Stair climbing
• Running
• Large strides
• Extreme postures

A wide range of factors or events may cause sacroiliac joint dysfunction, including:

• Traumatic injury. A sudden impact, such as a motor vehicle accident or a fall, can damage your sacroiliac joints.
• Arthritis. Wear-and-tear arthritis (osteoarthritis) can occur in sacroiliac joints, as can ankylosing spondylitis — a type of inflammatory arthritis that affects the spine.
• Pregnancy. The sacroiliac joints must loosen and stretch to accommodate childbirth. The added weight and altered gait during pregnancy can cause additional stress on these joints and can lead to abnormal wear.
• Infection. In rare cases, the sacroiliac joint can become infected

And Ankylosing Spondylitis:  (from spondylitis.org)
Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis.
AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected.

The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac (SI) joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.

Neurosurgeon Gestapo

Why oh why do patients have to feel like criminals when they are the ones that are sick?  My Gosh....I wouldn't wish that experience on anyone.

Well today I got off my sorry butt and wrote a letter to my GP and neurologist about this kuckoo old koot neurosurgeon and his irrelevant questioning and absolutely provided no information on my condition, and that I want his recommendation and opinions expunged from my medical records.  Then I found the owner of the neurosurgery group he belongs to and wrote THEM and the medical board and the office managers about him.  What a crock of bullshit.  I'm sure he was motivated by looking for reasons to dismiss me because he's obviously not competent to do surgery on ANYONE.  He asked me my name 22 times during the spanish inquisition he subjected me to.  He did not discuss my MRI results or my condition at all.  His name is Dr. Lewis Brown, neurosurgeon, Phx, AZ.  Do not see him.  Run for the hills if you are referred to this guy.  I should have listened to the online reviews at healthgrades and all those places.  There are horror stories just like mine there.

So now I can say "that's that" and my neurologist can find me a new neurosurgeon.

Been having such a rough time with health and doctors.  I don't know if I should scream or cry.
I spent last week with enormous hip and lower back pain.  Sacrilitis is what was determined and I likely have anklylosing spondlyosis.  My grandmother had it.  Last week I had uveitis in both eyes.  The pelvic pain has let up but I was so bad for a few days I could hardly walk.  Boy did I need my pain pills.  I'm being sent for xrays and can't get in to see my rheumy till end of Jan.  They returned my phone calls but did nothing that made any sense. 

On the only bright side, my GP Bahkta was so caring and empathetic I almost didn't even recognize it!  He asked me if muscle relaxers might help.  They might.  He didn't question me or make me feel stupid.  He respected me and cared about me like a good doctor should.  Thank goodness for doctors like him.  They trump the idiots, don't they? 

So I've more tests to go take on the ankolyosing spondlyosis (sp-sorry)  I'll keep you updated.  The pain was incredible and I'm thankful for pain meds.  I'm not happy about this condition...and have a bad feeling about it.  Confusing how it comes and goes, but each time is worse than the time before.

Don't settle for incompetent doctors.  They are not worth your time.  

I only like to go to the doc when I'm NOT sick

What's up with that?  An epiphany happened to me just now.  I found myself writing my close lupus friends online and asking if THEY thought I needed to call my doctor.  Had black stools this morning and haven't changed food or meds or taken iron.  Just feeling a slight discomfort and I definitely don't want to start stomach tests in the middle of this neck and spine fiasco.  Right?

And then I thought, I do this every time something serious comes up.  The trigeminal neuralgia attacks, the TIA, the ulceric lesion, the plantar fasciitis so bad I couldn't walk.  In retrospect it seems I don't want to go to the doctor unless we already have something established in relation to the problem.  I wonder if it's a trust issue or just a lazy issue.  I usually make it to tests and labs and follow ups without a problem.  Perhaps it's just denial that I have yet another health issue.  Truth is I've been ignoring my stomach issues a very long time now.  Maybe this is my body's way of fighting back, lol.  I've been living on promethazine for over three years, for nausea after eating, and I go through about 30 pills a month so I suppose that could be considered an issue.  Once again I've complicated the issue since I had gastric bypass surgery in 2004 and just chalked it all up to what is calling dumping syndrome.

Maybe I'll call and at least get an appointment with my GP for next week.  Oh Poo!  No pun intended!

Do any of you ignore the doc when your sick?  WHY do we do that?

Occipital Neuralgia is a pain in the NECK!!!!

I must say the numbness from the occipital neuralgia is one of the strangest feelings I've ever had.  It feels as if I have a hole in my head.  An abyss where if touched or layed on will disintegrate or melt into oblivion.  How strange for me to hate th numbness so with so many extremely painful nerve conditions which are much much worse.

The zapping match striking pain is back under the fourth toe right foot for some long drawn out continuous torture.  It was MONTHS OF BLISS, thank you and bless you Dr. Todd Turley!!!!!  He listened to me..my wonderful dear pain mgmt doc who gives me radiofrequency ablations for my cervical spondylosis and cortisone for my peripheral nerve entrapments and radiculopathies.  He gives me months of being able to manage the incoming pain so I can deal with the tough stuff, like the trigeminal neuralgia and occipital neuralgia.

I used to be so jealous of the diabetic peripheral neuropathy sufferers whom walked around with numb feet.  I NEVER had numb feet in 20 yrs of nerve damage.  Hypersensitivity- check.  Freezing and burning-check.  Zapping (Aunt Agatha's Traveling Pains, lol)-check!  Numbness, no.  Just once.  I stepped out of the shower singing mindlessly....lala....lalala...tra la la....OOPS...looked down at my foot which was gushing blood.  I had no idea.  AHA, I said.  THIS IS NUMBNESS.  It went away as fast as it came and hasn't been back.  BYE NUMBNESS....HELLO PAIN!!!!  Boo!

So here is my occipital neuralgia gameplan.  I'm seeing an orthopedic surgeon for my FIRST TIME.  Nice guy.  Young.  Not sure what he knows about cranial and occipital nerves.  I hope he knows they are in the area and causing me pain along with the herniated discs, degeneration and bony spurs in the C2 to C5 area.  AND I"m seeing a new neurologist.  He's getting a copy of my MRI I PROUDLY took today without running away like I did last time like a bat out of hell.  They wrapped me up like a burrito, put plugs in my ears, then big sponges, then wedged me in.  NEVER had I had trouble before doing an MRI.  Not this time!  I YELLED, "GET ME OUT OF HERE"!!!!!!  HELP HELP HELP......Then I got out still yelling at them.  WHAT were you trying to do to me?  Are you kidding me?  Yikes.  I was a spectacle.  I left mad at myself for having to reschedule.

So I had the T2 flair  cervical MRI today.  I was fine.  I went to my happy place.  IF only I could go to my happy place from the pain on the side of my head, the numbness and the relentless zapping of my foot.  BUT no........here I am distracting myself on my blog.  Ah....

So here's a pic of my wonderful sexy neck for anyone who wants to see it.  LOL  I won't have a reading on it till Fri but they gave me a CD.  ;)   heh heh...

Have a FUN time for me today!  Make someone smile!

I'll come on and write an update after seeing the orthopedic surgeon and neurosurgeon on Friday!  Wish me luck!!!  BOO to pains in the neck!!!!

Here are some pics of my cervical spine.  You can see the herniations and spurs and the arial view you can see the neural pathway compromised.  KOOL, huh?

 

Immune Complexing

Ok, I'm on the lookout for lupies like me who have the following:

Have been told by the lab for an extended period of time that they are unable to obtain results on the Direct DNA Panel due to immune complexing.  I have had this result from labcorp for over a year now.  My last lab was this:

I'm looking for lupies who are NEGATIVE on the TITER TEST.  I was told by my rheumatologist that people like me have so many antibodies in our blood that it cannot be titered.  The Direct ANA is the only test that will read our autoantibodies.

Please respond to me here at my blog or at jujubeee714@msn.com.  PLEASE!!!!!!!

Here is a GREAT ANIMATION of what an immune complex is:
immune complexing animation

Lupus Mouth Sores

Owies!  I've got a few of em on the inside of my mouth and in my nose and up my nasal cavity, and even one in my esophagus.  Lupus mucous membrane sores are common.  Here's some info on them, and here's a pic of mine.  They take me about a week to get rid of.  Seems like I always have at least some of them.

The oral mucosa, or lining of the mouth, is one of the most common targets in lupus erythematosus (LE) patients. Internists, rheumatologists, and even dermatologists commonly omit examination of the mucous membrane when taking a patient's medical history and during the physical examination. This medical oversight may certainly delay appropriate medical care for LE patients, as LE mucosal lesions often give clues for a correct diagnosis and prognosis. In this article we try to give a practical yet comprehensive overview of the most common mucosal lesions found in LE.

SPECIFIC MUCOSAL LESIONS IN LE

Oral apthae (canker sores)

In the medical literature, oral apthae often are referred to as recurrent apthous stomatitis. These sores, or lesions, affect up to 15 percent of the normal population.
Conditions associated with a higher frequency of oral apthae are:
systemic lupus erythematosus (SLE)
inflammatory bowel disease (IBD)
acquired immune deficiency syndrome (AIDS) and other causes of immunodeficiency states
Behcet's Disease. Behcet's is a rare disease characterized by oral, genital, and skin ulcers as well as eye inflammation and systemic vasculitis.

Description: The oral apthae lesions are often small (less than 1 cm), painful, and have a tendency to occur on the buccal mucosae (inner cheeks) of the mouth. The lesions tend to last up to two to three weeks. The main mimicker of apthae is herpes (a.k.a. fever blisters). In herpes, the ulcers often affect the lips and gums. They tend to appear in groups and to be preceded by fluid-filled blisters.

Oral apthae in LE patients tend to last longer, be larger, and appear most often on the hard palate, or roof of the mouth. The most important feature of apthae in LE patients is the strong association of these oral ulcers with an internal organ flare of the systemic lupus disease.

Treatments: The most effective treatment for LE apthae is to control the SLE with a safe and immunosuppressive therapy. This usually is based on the combination of systemic corticosteroids with anti-metabolites, such as azathioprine (Imuran) or mycophenolate mofetil (CellCept) with cyclophosphamide.

Additional treatment may consist of high-potency corticosteroids placed directly upon the skin, such as clobetasol gel (4-5 times a day) or topical tacrolimus ointment (2-3 times a day); or medicines taken by mouth, such as colchicine, 0.6 mg twice a day, Dapsone, 100-150 mg/day, or thalidomide (Thalomid), 100-200 mg/day.

Mucosal discoid lupus erythematosus

Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. The head and neck are most commonly affected areas. Very few people with DLE have associated systemic LE.

However, certain subsets of people DLE have a stronger relationship to systemic lupus. These are people with:
disseminated DLE (DLE lesions above and below the neck);
palmoplantar DLE (DLE lesion on the palms of the hands and soles of the feet);
familial DLE or familial SLE (first-degree relatives with DLE or SLE);
mucosal DLE (DLE lesions affecting mouth and rarely, other mucous membranes).

Description: DLE of the oral mucosa occurs only in the setting of cutaneous DLE. The most commonly affected location is the inner cheeks, and often there will be associated lip lesions. Usually these will be asymptomatic (presenting no symptoms), but when ulcerated they become quite painful.

The lesions resemble red plaques surrounded by lacy whitish areas. Mucosal DLE lesions are much like lesions seen in a very common disease called lichen planus. The presence of DLE-associated lesions on the skin and lips should prompt to the exclusion of oral DLE in patients with "lichen planus-like" mouth lesions.

Treatments: Treatment of mucosal DLE should be based on a combination of topical and systemic therapy. Topical therapy consists of high potency corticosteroids (clobetasol gel 4-5 times a day), with or without topical tacrolimus ointment (2-3 times a day). Thalidomide 100-200 mg daily, with or without hydroxychloroquine (Plaquenil) 200 mg twice daily, is often highly effective for oral DLE.

Rare severe cases may require systemic immunosuppressive drugs such as azathioprine. mycophenolate mofetil, or leflunomide (Arava).

Bullous SLE

This is a serious (fortunately, rare) disease in which individuals have antibodies against their own mouth and skin. These autoantibodies react against type VII collagen, a molecule found in the basement membrane zone. The basement membrane zone is an area where the outer layer of the skin (epidermis) and mouth (epithelium) are separated from the inner layer of skin (dermis) and mouth (submucosae).

Skin or mucosal biopsy and the evaluation of tissue-bound and circulating anti-type VII antibodies in the blood are the diagnostic procedures.

Description: Affected individuals generally have skin lesions consisting of grouped blisters, especially on the head and neck. The arms and legs also may be involved. Half of these individuals have extensive superficial erosions affecting the mouth, esophagus, larynx, trachea, genitalia, and eyes.

Treatments: Effective treatment consists of a combination of systemic corticosteroids and immunosuppressive therapy with agents such as azathioprine and/or mycophenolate mofetil. Severe cases or cases affecting the esophagus (food pipe), laryngotrachea (air pipe) mucosa or the eyes will require treatment with cyclophosphamide.

NON-SPECIFIC MUCOSAL LESIONS IN LE

These lesions often occur secondary to immunosuppressive or other therapies that LE patients are receiving.

Herpes simplex labialis (fever blisters)

Description: This type of herpes, which affects the mouth, is quite common in normal people. The sores appear as painful skin erosions, often preceded by small groups of fluid-filled blisters on the lips and gums. Episodes often last two to four weeks, but clear up without medication.

In normal populations, these breakouts occur about three to five times a year, and often are triggered by infections, stress, sun exposure and menstrual periods. People who have LE or are receiving immunosuppressive therapy tend to experience these outbreaks more often-even as frequently as every month-and the outbreaks tend to last longer than three weeks.

Treatments: Because systemic corticosteroid medications are the most common culprits for this complication in people with LE, the best ways to treat and prevent recurrent herpes is to lessen the exposure to such drugs in these individuals, and to use corticosteroid-sparing drugs (for example, azathioprine, mycophenolate mofetil, and cyclophosphamide) early in the course of disease.

However, some people with LE may require herpes treatment with antiviral drugs such as valacyclovir (Valtrex) or famciclovir (Famvir).

Stevens-Johnson Syndrome (SJS)

This disease is one of the rare complications of mucosal herpes outbreaks. Like herpes, SJS is triggered by medications; the most common are sulfa drugs, anticonvulsants, and pain killers. (SJS is known by many other names, such as Dermatostomatitis, Stevens Johnson Type; for additional information visit The National Organization for Rare Disorders website at http://www.rarediseases.org, or the Stevens Johnson Syndrome Foundation at http://www.sjsupport.org.

Description: People with SJS will show extensive ulcers in the eyes, mouth, nose, genitalia, and skin, usually two to four weeks after the herpes outbreak. The skin lesions are called "targets" because of the annular (ring) configuration. When these lesions coalesce, or merge, such extensive erosion occurs that affected individuals often must be admitted to a hospital burn unit.

Because of the potential exposure to the aforementioned drugs and their possible higher incidence of recurrent mucosal herpes, people with LE certainly would be more susceptible to SJS than the normal population.

Treatments: There is no effective treatment of SJS. The use of high doses of systemic corticosteroids in SJS could be associated with higher mortality due to infections. In some cases, individuals with SJS develop permanent and often debilitating scarring of the eyes.

Oral candidiasis

Oral candidiasis, also known as thrush, is a common complication of immunosuppressive therapy such as systemic corticosteroids. Individuals at a higher risk for recurrent or persistent oral thrush are:
immunodeficient
inhaler-dependent asthmatics
either type 1 or type 2 diabetics
suffering from AIDS.

Description: Thrush appears as whitish-red, flaky plaques that can affect any area of the mouth, and often involve the esophagus. The lesions are often asymptomatic, but patients may complain of a burning sensation and difficulty in swallowing.

Treatments: Prednisone dose reduction, Nystatin oral lozenges or pills, and the occasional use of oral antifungals such as fluconazole (Diflucan), are necessary to treat this disease.

Oral cancer

Immunosuppressed individuals, including people with LE who are receiving immunosuppressive therapy, are at higher risk for skin and mucosal cancer. One type of cancer in particular, called squamous cell carcinoma, is highly associated with human papilloma virus (HPV).

In these individuals, the disturbed immune system leads to an increased susceptibility to HPV (HPV also is the cause of common warts). Some types of HPV are precancerous; as warts, they have the potential to be transformed into squamous cell carcinomas that will affect the skin and oral and genital linings.

Description: Physicians must recognize the importance of biopsying lesions in the mucous membranes, such as early warty lesions, white plaques (precancerous leuokoplaquia) or red plaques (erythroplaquia). Especially important to identify are lesions located on the back of the inner cheeks and on the tongue.

Treatments: The treatment of precancerous warts is based on destructive methods, including surgery, electrocautery, and freezing. The topical skin cream imiquimod (Aldara) may bring additional benefits.

Established oral cancer often requires extensive surgical removal with radiation or chemotherapy. The best way to prevent this complication in LE patients is the appropriate use of immunosuppressive therapy.

My Neuropathy

Where do I begin?  My neuropathy began twenty years ago when I had gone from gestational diabetic to type 2 diabetic.  During my pregnancies I controlled my blood glucose with insulin and oral diabetic meds.  I have kept it under very tight control most of the twenty years.  My aic fluctuates from between 5 and 7 but never higher.  I've had a couple highs in the last few years due to being on high doses of steroids (prednisone) to temper down my overactive immune system from having systemic lupus.  It raises blood glucose.

I've done all the meds also.  I'm presently taking cymbalta for nerve pain.  I take the MAX dose of 120mg a day and have been on that dose for TEN years.  I fought my insurance company for it off formulary for a prior auth based on A) without it I would be in withdrawal and very sick since it is a seratonin uptake inhibitor drug and that would cause me to have to go on many expensive drugs and treatments.  And B) The use of cymbalta keeps me from having to take a multitude of other expensive medications, like lyrica, neurontin and elavil and opiates that cost more than just cymbalta.  I explained how well it has worked for me, what a good medication it truly is.

I've been through the burning pain and the freezing pain.  Used to only be in my feet and now I get it up my legs occasionally.  Not too often.  I believe the cymbalta works a little for that type pain.  I don't often have tingling pain either.  I do however have zapping type pain and hypersensitivity.  And they are worsening and relentless.  The last bout was a couple weeks ago and it tested my patience.  The kind of pain I have is entrapment pain under my 4th toe right foot.  Doctors used to think it was a neuroma, but it's not.  So says the MRI and the location of the pain is UNDER the toe and not between it where neuroma's like to hide.  It feels much like someone is lighting a match over and over under that toe.  Each time I wince and it goes on and on this last bout for FIVE DAYS without stopping.  The pain feels like paper cuts.  It stings.  It's a 7 on the pain scale, sometimes it's a 10 but when it goes on for days it tears away at your fiber.  Bit by bit.  It is a nightmare.  I used to have the flares of it every few months and it would last for a few hours.  The flares got closer and closer together over the years and have lasted longer and longer.  It now happens every 5 or 7 days and lasts from a day to FIVE days without stopping, one zap right after the other then another and another.  It's EVIL.  I suffer through it, I take cymbalta, and I'm maxed on short acting narcotics and tramadol.  I've tried capascin, lidocaine, all the neuropathy meds, long acting opiates, every short acting narcotic made, etc etc.  Nothing takes the pain away.

I hold the compression for a few seconds of relief.  Ice doesn't work and neither does heat.  Medical marijuana salves are useless.  What an unbelievably nasty condition this neuropathy is.  I have cortisone shots, radiofrequency ablations and nerve blocks.  RIGHT INTO THE AREA, and it doesn't work.  It does not work.  Nothing works.

To make less of it and for a laugh or two I call it Aunt Agatha's Traveling Pains.  It's funny, yes?  Nothing funny about neuropathy folks.  Whether mine is from my lupus or diabetes, doesn't matter..the story ends the same.  It's here to stay.  It's irreversable damage and it's worsening in spite of excellent blood sugar control.  For anyone who has this, I am truly truly sorry.  My heart goes sincerely out to you.

Thanks for listening!

The EYES have it!!!!

LOL, I'm talking about damage to the eyes.  Specifically retinopathy.  I failed my Amsler test and will find out soon if I need a vitrectomy or laser surgery.  I am not sure if my retina has yet detached, but I do know it is worsened in my right eye in the last year.

I'm double whammied here with both type 2 diabetes (controlled-and I can prove it, lol) and systemic lupus, and on plaquenil.  That's triple whammied I guess!


Diabetic retinopathy (die-uh-BET-ik ret-ih-NOP-uh-thee) is a complication of diabetes that affects the eyes. It's caused by damage to the blood vessels of the light-sensitive tissue at the back of the eye (retina).
At first, diabetic retinopathy may cause no symptoms or only mild vision problems. Eventually, however, diabetic retinopathy can result in blindness.
Diabetic retinopathy can develop in anyone who has type 1 diabetes or type 2 diabetes. The longer you have diabetes, and the less controlled your blood sugar is, the more likely you are to develop diabetic retinopathy.
To protect your vision, take prevention seriously. Start by carefully controlling your blood sugar level and scheduling yearly eye exams.

Here are the FIXES for retinopathy via the Mayo Clinic online resource:

• Focal laser treatment. This laser treatment, also known as photocoagulation, can stop or slow the leakage of blood and fluid in the eye. It's done in your doctor's office or eye clinic. During the procedure, leaks from abnormal blood vessels are treated with laser burns. Focal laser treatment is usually done in a single session. Your vision will be blurry for about a day after the procedure. Sometimes you will be aware of small spots in your visual field that are related to the laser treatment. These usually disappear within weeks. If you had blurred vision from swelling of the central macula before surgery, however, you may not recover completely normal vision. But, in some cases, vision does improve.
• Scatter laser treatment. This laser treatment, also known as panretinal photocoagulation, can shrink the abnormal blood vessels. It's also done in your doctor's office or eye clinic. During the procedure, the areas of the retina away from the macula are treated with scattered laser burns. The burns cause the abnormal new blood vessels to shrink and scar. Scatter laser treatment is usually done in two or more sessions. Your vision will be blurry for about a day after the procedure. Some loss of peripheral vision or night vision after the procedure is possible.
• Vitrectomy. This procedure can be used to remove blood from the middle of the eye (vitreous) as well as any scar tissue that's tugging on the retina. It's done in a surgery center or hospital using local or general anesthesia. During the procedure, the doctor makes a tiny incision in your eye. Scar tissue and blood in the eye are removed with delicate instruments and replaced with a salt solution, which helps maintain your eye's normal shape. Sometimes a gas bubble must be placed in the cavity of the eye to help reattach the retina. If a gas bubble was placed in your eye, you may need to remain in a facedown position until the gas bubble dissipates — often several days. You'll need to wear an eye patch and use medicated eyedrops for a few days or weeks. Vitrectomy may be followed or accompanied by laser treatment.

Surgery often slows or stops the progression of diabetic retinopathy, but it's not a cure. Because diabetes is a lifelong condition, future retinal damage and vision loss are possible. Even after treatment for diabetic retinopathy, you'll need regular eye exams. At some point, additional treatment may be recommended.

 Of course I wonder if my damage is from lupus, diabetes or plaquenil, but I learned the hard way as of late that it's all about the treatment.  Sometimes symptoms can be so painful or dangerous to your health that it doesn't matter how you got there..just that you find a way to get back where you belong and put your body back in sync.  Here's what retinopathylooks like:

 I will, of course, keep the blog updated on my EYES and possible treatments for the condition.  ;)

Shana Tova u'Metuka

Shana Tova u'Metuka – a good, sweet new year." To ALL! May your year be a prosperous and happy one!

On the lupus front:  Almost 3 weeks into CellCept and I'm doing good.  Some stomach issues, and I'm taking laxatives to help.  Getting nose and mouth sores but they aren't getting worse, just healing and none have turned into lesions or ulcers.  That is a plus.  My energy level is improved.  I have not had any more instances of bursitis in my hips.  Neuropathy pain has been minimized and I have not had a TN attack.

My cervical problems are increasing, pain in the neck they are!  Besides the OA and the damage to connective tissue, I've noticed that early mornings I am stiffer longer and my neck and head are held in a sideways position, as range of motion increases throughout the morning, I straighten up.  I have had the telltale twitch under my left eye of the TN attack and hemofacial spasms but they haven't progressed to anything more than that.  I still fret that although I think I am very good hands for the lupus, my cervical spine is worsening and I'll end up sideways with cervical dystonia if I'm not managed more aggressively.

This New Year will come with new treatments and new developments.  I hope to hear about an SSDI hearing date soon.

For anyone who is reading my blog, thank you and I wish you a sweet New Year.  It is Rosh Hashana, a time of reflecting about our relationship with God and Earth, and atonement, who shall live and who shall die, who shall prosper and who shall be impoverished and who shall be enriched.  For anyone listening, have an apple and sweet honey to celebrate our New Year.

Thank you, Julie