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No-one Can figure out My Peripheral Neuropathy
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) |
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.)
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Based on all you've said--
--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 |
hmm....
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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. |
Don't be afraid to move on to another Dr, if any of them stop looking for answers for you.:grouphug:
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Also, this site
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 |
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 :) |
Get Checked For Celiac
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.
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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! |
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Tests
Hi Mac,
While it is true that early diabetes can cause neuropathy, I would think that at age 21 that's pretty unusual. It seems more likely to be autoimmune in some way. I know you've had a zillion tests, but what I'd suggest is calling your doctors to ask them to fax your results, or just go and pick them up. Then download the spreadsheets on www.lizajane.org for diagnosing sensory neuropathy and see whether you've had these tests. You'll need to download the page with the autoimmune tests. Many doctors do not know how to correctly look for hypthyroidism, how to evaluate a B12, or how to do an indepth search for an etiology. Most people here who have brought the lists to their doctors have had good reactions from them. Have you had a brain MRI for MS? Or visual evoked potentials? Having had optic neuritis, these might be good to have. Did you say you had erythema nodosum? Conditions that are associated with erythema nodosum include medications (sulfa-related drugs, birth control pills, estrogens), strep throat, Cat scratch disease, fungal diseases, infectious mononucleosis, sarcoidosis, Behcet's disease, inflammatory bowel diseases, and pregnancy. Your parotids are seemingly inflamed. This means you've had inflammation of the optic nerve, inflammation of the skin, inflammation of your parotid glands. Given these three autoimmune conditions, looking for rheumatological causes is most urgent. Please look at the page on lizajane.org and print it out. Ask your doctor if you've had all those tests, or just get the results and fill out the chart yourself, then ask for the rest. The website is http://www.lizajane.org If you stick with the labsheets, this is what they might look like over time (This is mine, 3 pages) http://www.lizajane.org/Users/lizajane/Lizajane's labs.xls Don't give up looking for an answer, but try to take a bit more control by knowing EXACTLY what the results are. (I had blood taken a few weeks ago for serum cortisol. When I called for the results, the nurse said, it's .6, normal. That didn't sound right to me, but she insisted. I asked her the normal range; she said she didn't know, but Quest said it was normal. It is far from normal, but the person at quest probably misread the . in the .6. If I hadn't gotten my own copy, we would have missed that my pituitary is suppressed, yet again.) |
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I'm glad you caught the quest people's mistake! Ok, Here is my thinking about having Diabetic Neuropathy.
I agree that it is more likely auto immune based on the fact that I keep coming down with different auto immune problems. One right after the other. As for getting all the blood tests it would take a ton of work. As I am seeing 7+ doctors at the moment and all have done blood tests on me. And it would cost $$. They charge by the page in some of the places I go. I have downloaded the neuropathy spreadsheet and will bring it with me the next time I go to my neuro. But which one has the autoimmune tests? And as for looking for rheumatological causes I am currently seeing a rheumatologist who is currently testing me for sarcoidosis. (I have the CT tomorrow, which means I can't take the blood sugar drugs for 48 hrs. after that. So my sugar charts will look like my sugar went wacko, but as it dosen't seem to be helping much to have it being low, I hope it won't matter.) |
Ok.. I don't want to be rude.. I just want to give you a new perspective on diabetes that you may not have already known.
Being 21, you probably think you are too old for type 1 and you may not fit the risks for type 2. You are NOT too old for type 1. You are only 21 years old, and juvenile is an older term that really isn't used much anymore. ALSO.. they probably gave you ORAL medications for the diabetes. Did you know that type 1 diabetes does NOT respond to oral medications? You must have insulin. That would explain why it did nothing for your neuropathies. Right now you have very poorly controlled diabetes if you are taking a medication not designed to control your type. I wish you would do some research on diabetes mellitus... and not poo-poo it away. One last thing.. Elevated blood sugars ARE diabetes. *what is your perception of diabetes?* Your words were I don't have diabetes, I JUST have elevated blood sugars. It could have been as a result of one of your medications, but if you continue to have those, and are not on those meds anymore.. then I am going to have to think that your neuropathies are diabetes related, and your doctors are treating it incorrectly. Now, I really didn't want to sound overly harsh, but, if you do have diabetes, you do need to get it under control. For yourself. |
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And am closely monitored by other doctors for my other problems. |
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oh yeah, as far as i know the best way to get rid of Prediabetes, is diet and exercise, get rid of the cause, the glucose lowering drugs won't and nerves don't heal quickly, it takes many months to years. best of luck, Brian :) |
Are you positive....
Are you positive that your bowel issues are IBS? The reason I ask is that erythema nodosum and peripheral neuropathy both occur in Crohn's Disease. Crohn's is autoimmune and has many extraintestinal manifestations. Many people with CD get uveitis/iritis. I have peripheral neuropathy from CD. I have also had erythema nodosum and iritis several times.
Perhaps the GI could order a Prometheus Serology 7 test if your insurance will cover it. It is somewhat pricey if you have to pay for it on your own. BTW, have you had a colonoscopy to rule out inflammatory bowel disease? A diagnosis of IBS is one of ruling out all other possibilities, not just relying on symtpoms. If your IBS diagnosis was made without doing a colonoscopy, then that diagnosis is suspect in my book. |
Hi. Welcome to the boards though I am sorry you are having such a horrible time. I am not going to go through my story but I am a "weird" case too. I am older then you but when this happened to me 28. Anyhow been to many docs and many top hospitals with little answers. I forgot what kind of testing such as mri or emg/nc but if you have not I would push getting those. Also just because you seem to young to have an issue doesn't mean it can't happen. I am not trying to scare you but I know for myself things that have happened mostly to older people have happened to me. It may be very rare but still something I think docs need to look into though many don't. Also are you bringing your mom or dad to any apts? I think it can help cause I sometimes see a difference in how I have been treated. Nothing like an angry parent to get things done. Hang in there and if you need anything or just want an email buddy feel free. I know how scary and lonely this is.
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Thanks for answering me. I did have a 4 hr. glucose tolerance test that said I was "barely in the range" of pre-diabetes. I then did a 2 Hr. glucose tolerance test a year or so later that said I was completely normal. And I agree, it might be the cause, or part of the cause, but because of all the other unexplained stuff, I want to push for other things too. As for exercise, it is hard as the foot problems keeps me from moving around much, but I try to do as much as I can. As for diet, I have always eaten well, which is something that annoys me. It doesn't seem fair that I have this problem when the people who Chug nothing but soda and eat tons of sugar/candy are perfectly fine. (I know it's possible, but it's just a gripe of mine. Sorry. :o ) |
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I am pretty sure I had the urine test for Crohn's. (negitive) The doc's looked at that, as I have the erythema nodosum and peripheral neuropathy, as well as other auto-immune problems... they also said I had the right body shape... :rolleyes: |
Urine test for Crohn's????
To my knowledge there is no urine test for Crohn's disease. If that were so, then things like the capsule endoscopy [camera pill] to examine the small bowel would never had to be invented. If you have been having on and off gut issues for some time, you owe it to yourself to get a colonoscopy to check for inflammatory bowel disease. I let them tell me for 25 years that I had IBS. I was so sick of complaining about my bowel issues to the docs I stopped complaining. Then when all then other issues popped up, neuropathy, severe arthritis, EN, avascular necrosis of the hips - all caused by untreated Crohn's - my gut issues could no longer be ignored. I wish I had been more insistent.
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I looked up Crohn's again. (paying greater attention) It could almost fit my "IBS" Situation. The Gasto put me on Antibiotics. (The strongest ones available) and they worked.... as long as I was on them. I took them for over a year. (Before this I was having MAJOR bowel problems. Diarrhea almost every day- which is why my pediatrician thought I was lactose intolerant...which after they finally tested me i was not.) Now that I am off of the antibiotics again. It is not too bad. But every so often I will get a flare up, that fits. My question is: Could Crohn's cause my earlier problems... and then these now? I saw when I looked it up that it might be caused by an autoimmune problem... possible connection, maybe? I will have to ask the Dr's on the 15th. (They aren't gastro, but they might be able to help.) |
Brain MRI?
Hi, Macophile, and welcome. I'm not sure if I just missed it or if you confirmed that you never had an MRI of the brain. Please let us know. I hope that's NOT the case but if it is, I am stunned!
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Hey Macophile,
Was reading your thread and have a question for you. Can you please elaborate on your irregular periods. How are they irregular? |
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(And thanks for the welcome, and the mistake catch!) |
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Ok here's an off the track thought.
Has anyone mentioned Polycystic Ovary Syndrome. It can mess with your hormones and once hormones are outta whack well its hard to get them back. And hormones are like a three legged stool with Adrenal, Thyroid and Sex HOrmones and they are all intereconnected and the stool gets lopsided and falls down then they are not in balance. But PCOS is also connected to insulin resistance and sugar problems that as we know are connected to neuropathy. And while I doubt this has a connection to you since you are now on birth control pills and likely not having bleeding problems, have yu had your iron and ferritn checked? Low iron and ferritin can also be connected to neuropathy. And low iron affects thyroid synthesis and an out of whack thyroid can also minic neuropathy problems. LIke I said though since you are on Birth contro pills its unlikley that you are low in iron unless you have trouble absorbing it which can be connected to gastro issues. Howver the low dose pills would tend to make the insulsin and sugar problems worse. Sorry thats all the throughts I have. :hug::hug: I hope you get to the bottom of it. |
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That is interesting about the iron. I will have to double check, but I am pretty sure they have tested that numerous times, and my levels are normal. If I find they havent, I will make sure they will. Thank you so much for your thoughts. :hug: |
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Good luck to you, Macophile! I hope you get answers and feel better soon. |
I can only say i've been through everything you have and you will find,like me more then once hear we go again. Please when you have time check Glen's
imformation..Do you have trouble walking,from being able to do fine on your own,to cane,walker,scooter,power chair,or wheelchair. Hope not but beats falling so on..I'm glad your here,not for PN but your testing is bound to help someone and perhaps someone just may help you, how about your hands up, dry mouth,dry eyes,very dry skin? Bless you and hugs to all.I have found Cinnamon Pills help with pre and Diabete 2 please ask Dr. it's old fashioned but making it's way back..Sue |
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I hope I do find some answers, and soon. I just have to wait till the 15th...then I get to see the Rheumatologist, and hopefully she can tell me if I have sarcoid or not. (If not, it's back to square one...or at least, almost.) I'm getting exhausted. |
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I can walk on my own, I just don't like to walk, as it makes the pain worse. (So does lying down for that matter.) I do have dry mouth, and I didn't notice it for a while, but recently I have been noticing I think I might have dry eyes as well. My skin however, seems to be normal. (I hope) And I would be glad if some of my info was to help someone else. Or if theirs was to help me. That is why I am on these boards. One question though... What/who is "Glen's imformation"? Thank you for your help. |
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Update
The Rheumatologists think I have Sarcoid, or another Inflammatory Auto-Immune disease, (based on the fact I had Erythema Nodosum, and Optic Neuritis, Swelling, And Blood tests that point them in that direction, like the Ced rate being elevated for 2 years now.) They still don't seem positive it is it, but based on history they seem to think it is probable. (And I am like, you couldn't have seen this last year when I saw you?) And they also think I have Fibromyalgia.
They are going to start treatment (can't do steroids, or don't want to because I had such massive doses because of the Optic Neuritis so they are going to try Methotrexate which they say won't help with the pain as damage has already been done. It makes me feel a little hopeless though. As they have tried almost everything on me for treatment for pain and nothing seems to work well...The steroids were wonderful though.) but are waiting to check in with my Neuro. Idk. This is confusing. If anyone has any other ideas or suggestions I am still open! |
Possible place for help
Try posting in the Sjogren's Syndrome Forum. Here is the web site: www.sjogrensworld.org
Good people there. Maybe someone can help you. Billye |
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Update
I have started the treatment, Methotrexate (sp?). I just hope it does something, as this problem has gone on long enough, and has me and other people confused.
But if anyone else has any ideas please share! :hug: |
please clarify for me..
I am still on vacation and have time constraints with this
laptop and wifi.... I am looking at this thread a bit each time I log on, and have some questions...if you can answer them for me, by next week when I return I may be able to offer some opinion... Right now I wonder what your B12 level really is. Also did you or do you use: Nitrous oxide Go to raves smoke MJ were given antibiotics Cipro/Levaquin, or Flagyl (metronidizole) in the recent past. exposed to formaldehyde in new building/carpeting or been varnishing or stripping furniture. drink well water or exposed to arsenic treated wood have you had a serum bicarbonate run regularly while using that Topamax? Topamax can cause acidosis which gives symptoms of PN. I will be back in the latter half of next week, and can then devote more time to your thread. See ya then. |
Ok, Let me see. I will answer to the best of my abilities.
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