[Macophile]

I have been having MED. problems since May 2007, and no-one can figure it out. I am hoping maybe someone can help me... If anyone can think of anything please let me know. And I THANK YOU in advance for bothering to read all of this. <3

I am a 21 yr. old Female who does not drink or smoke. I have migraines, allergies, unexplained rapid heart rate, irregular periods, and IBS.

In May of 2007 the first three toes on my right foot went numb on the bottom and then I proceeded to get pains in the foot (these developed and got worse over time, and eventually occurred in both feet (and are worse when lying down). Now I also have a degree of "numbness" on the left foot's first three toes on the bottom as well. This pain is very severe, and greatly inhibits my daily life. It can vary between a Burning, Tingling, pins and needles, stabbing, burning itch, or sharp ache sensations. Sometimes several of these sensations at once.

I then Developed Optic Neuritis (In July of 2007), and was put on high dose IV steroids and then pill ones which were slowly tapered down. (thankfully my vision has mostly returned.) While on the Steroids the Pain in my feet was dramatically reduced and once off the steroids the pain returned full force, and has since then gotten continuously worse.

They have done MRI's of my spine (all of it) that show some of my disks are pressing in a bit on my spinal cord, but the Dr's say this is not what is causing the problem. They also said I had degenerative disk disease, but that that can be seen in almost everyone, and is not causing the problem.

The Neurologist did 2 EMG's (separated by about 6months) both of which show slight abnormalities, but nothing concrete to make a diagnosis.

I was given a Spinal Tap (OW!) by my neurologist, the results of which were clear and normal. I saw a Spinal Surgeon to make sure the disks pressing on my spine were not causing a problem, and he says they are not. I was sent to a metabolic specialist, who also cleared me of all things metabolic.

My Neurologist sent me to his mentor (is this a good sign that I have so baffled a doctor he has to send me to his teacher?) who thinks it is small fiber nerve disease and decided we should do a punch Biopsy. The biopsy shows I do have Peripheral Neuropathy.

I was sent to a Endocrine Dr. And he cleared me for a tumor on my adrenal gland, but found my Insulin and glucose was slightly elevated. I passed the glucose tollerance test, but he put me on medicine to bring down my Blood sugar anyway to see if it could have been the cause of the
Peripheral Neuropathy. As far as we can tell by now it isn't. (In fact, my feet are still getting worse.)

Though all this My Pain clinic doctor was trying steroid injections in my Back (ESI's) which didn't do much. (This first helped a bit, but the second did not.) He then put me on Lyrica to see if that will help the pain. It did at first, but around the time of the dose increase (to see if it would help more) the symptoms worsened again, and now the Pain Clinic Dr is saying the Endocrinologist should be handling the issue since it is cause by the blood sugar. Now we can be pretty sure it is not being caused by that so now I don't know what the Pain Clinic will do as he is not very willing to do anything.

I went to a Rheumatologist for the second time In June of 2008, and They think I might have Fibromyalgia, but they do not think that is causing the problem with my feet. They origionally thought I might have Rheumatoid Arthritis, but when I came in for the Ultrasound on my feet the man who was going to perform it took one look at me and asked: "How long have your parotid glands been swollen?" I was confused, but he did a few other tests (feeling glands, and asked me about my history) and then did the ultrasound. The ultrasound showed nothing of interest so I apparently do not have RA. But now they think I have Sarcoidosis due to my swollen glands, my history of Optic Neuritis, and Erythema Nodosum. They say that even though the Chest X-ray I had was clean, I could still have it, as 5% of people who have it do not have lung involvment. This diagnosis could explain the foot problems, the Optic Neuritis, and the Erythema Nodosum...

I then Had a Gallium Scan 2 weeks ago, the results showing only a slight abnormality in my Parotid glands. Now they are Going to do a high contrast CT of my Lungs, then the doctor will look at all the evidence, and if it is still confusing enough/ compelling enough they will do a Biopsy.


Other Info:

The only surgery I have had: Tonsillectomy.
My Blood test results for all diseases like lyme, and HIV are neg. as well as my B12 levels and other levels doctors have checked except my CED (?) rate which is raised telling them somewhere in my body there is inflammation.
Of course the fact that the steroids helped my feet tremendously also should have been a clue of that inflammation.
I do not know my family history as I was adopted.


Drug List

Migraine
1) Amitriptyline- 10mg tablet (6 at night)
3) Topamax- 100mg tablet (1 at night)
5) Magnesium- 500mg tablet (1 at night)

Allergies/Asthma
1) Benadryl- 25mg caps (2 at night, or as needed)
2) Singulair- 10mg tablet (1 at night)

Irritable Bowel Syndrome/Acid Reflux
1) Florajen 3- 460mg caps (2 caps. 2x a day)
2) Protonix- 40mg tablet (as needed)

Period Regulation
1) Reclipsen- (Desogestrel 0.15mg, Ethinyl Estradiol 0.03mg) tab (1 at night)

Foot Pain/Problems
1) Gabapentin- 600mg tabs (4 tabs a day)
2) Lyrica- 100mg caps (1 cap 3x a day)
3) Baclofen- 10mg tablet (2 tabs every 8hrs.)
4) Steroid Injection in back (ESI)- 3/5/08, 4/9/0
5) Neuropathy #6 8-6-0.2-2-2 Gel (3-5x a day to painful areas)

[Macophile]

I should probably also mention that I now cannot feel temperature in the areas that are "numb". (And by "numb" I mean the loss of sensations... like I can kind of feel if I touch the areas but it is very faint.)

[glenntaj]

--the doctors should be looking for an inflammatory autoimmune condition first, though it is quite possible for small-fiber neuropathy to result from impaired glucose tolerance that has not yet reached "frank" diabetes.

Sarcoid can certainly result in peripheral neuropathy in many cases, as can any of the autoimmune vascular or connective tissue disorders--not just rheumatoid arthritis, but lupus, polyarteritis nodosa, Sjogren's syndrome . . .have you been titred up for the more specific SS antibodies that are often involved with the latter?

Take a look at:

http://neuromuscular.wustl.edu/antibody/pnimax.html

http://neuromuscular.wustl.edu/antib...op.htm#sarcoid

[Macophile]

Originally Posted by glenntaj

--the doctors should be looking for an inflammatory autoimmune condition first, though it is quite possible for small-fiber neuropathy to result from impaired glucose tolerance that has not yet reached "frank" diabetes.

Sarcoid can certainly result in peripheral neuropathy in many cases, as can any of the autoimmune vascular or connective tissue disorders--not just rheumatoid arthritis, but lupus, polyarteritis nodosa, Sjogren's syndrome . . .have you been titred up for the more specific SS antibodies that are often involved with the latter?

Take a look at:

The whole small-fiber neuropathy to result from impaired glucose tolerance that has not yet reached "frank" diabetes is what they were thinking for a while now. However the Endocrinologist is begining to think otherwise, as the treatment (for diabetes) has done nothing for me, in fact I seem to be getting continuously worse.

I don't know if I have been "titred up for the more specific SS antibodies" but I think it is worth looking at, especially since the only thing so far that helped my feet greatly was the steroids. (A big clue to several doctors.... of what they don't say.)

Thank you so much for your help. I will be looking at the links again, when I have more time to read everything throughly.

[Jomar]

Don't be afraid to move on to another Dr, if any of them stop looking for answers for you.

[Silverlady]

Liza Jane's testing site www.lizajane.org may give you some help too. But based on your symptoms, I have to agree with Glenntaj.

You have described some of the same things I have and similar results with anti-inflammatory medicine. I have Sjogren's Syndrome with neuropathic damage coming from it. It's also possible you have more than one problem. The pre-diabetes has caused one of our other members,... "Brian".... to suffer from neuropathy.

Good luck,
Billye

[Brian]

Yep, it sure did.... trouble is when the nerves are repairing or trying to regenerate at first it is nearly impossible to tell the differance between worsening or repairing, once i got my sugars levels right, i had a lot of flare ups and many months after i started to notice slightly less severity of symptoms and that went on for a long time.

Thiamine [B1] helped with my burning, i took 100 mg x 3 times daily which did help some, R lipioc acid also helps some with the burning but it can drive your sugar levels down so must be very carefull if taken oral diabetic meds like Metformin as well, Benfotamine [ a very powerfull B1] has helped others as well.

When i first got these problems. one doc give me anti inflamatory drugs [ 6 celebrex daily ], & they helped. so i am not surprised that the steriods helped you.

best of luck
Brian

[FearFactor]

Erythema Nodosum is also a sign of celiac disease. Celiac can also cause neuropathy, so you need to get worked up for celiac as well as some of these other disorders. Make sure you get a gastroenterologist that knows something about celiac. You will need a few blood tests (one for the gluten antibody) and a stomach biopsy to be certain. Based on the fact that you mention IBS, celiac is a good possibility. If I were you I would get tested for gluten antibodies--they can cause small fiber neuropathy.

[Macophile]

Originally Posted by Brian

Yep, it sure did.... trouble is when the nerves are repairing or trying to regenerate at first it is nearly impossible to tell the differance between worsening or repairing, once i got my sugars levels right, i had a lot of flare ups and many months after i started to notice slightly less severity of symptoms and that went on for a long time.

Thiamine [B1] helped with my burning, i took 100 mg x 3 times daily which did help some, R lipioc acid also helps some with the burning but it can drive your sugar levels down so must be very carefull if taken oral diabetic meds like Metformin as well, Benfotamine [ a very powerfull B1] has helped others as well.

When i first got these problems. one doc give me anti inflamatory drugs [ 6 celebrex daily ], & they helped. so i am not surprised that the steriods helped you.

best of luck
Brian

Hi Brian,
Ok, the B1 is interesting. I have never heard of that! I might have to try it.
As for the celebrex, I did actually try it. (I was taking it for migraines at one point...) and it made my feet worse. Don't ask me why. Incredibly weird, but what can you do. It is also interesting that it took so long for your feet to "right" themselves. Can I ask if you were full-fledged diabetic.. and for how long before you started treatment? I am wondering if there is a connection.
Thanks!

[Macophile]

Originally Posted by FearFactor

Erythema Nodosum is also a sign of celiac disease. Celiac can also cause neuropathy, so you need to get worked up for celiac as well as some of these other disorders. Make sure you get a gastroenterologist that knows something about celiac. You will need a few blood tests (one for the gluten antibody) and a stomach biopsy to be certain. Based on the fact that you mention IBS, celiac is a good possibility. If I were you I would get tested for gluten antibodies--they can cause small fiber neuropathy.

Hmmm... I never knew that Erythema Nodosum is a sign of celiac disease. I do actually have a gastroenterologist, and he does know about celiac. (Or I think he should. He is chief of gastroenterology) He tested my blood for celiac, and it was negitive. (I def. havent had a stomach biopsy. (eeks.) I have no clue if I have been tested for gluten antibodies (Is this different from celiac testing?). I will have to check with my dr. (Is this something the Gastro would do?) Thank you so much for your help!