Hi everyone,

I've been reading these threads for the past week and a half, so I could get a better idea of what I'm dealing with and how to help myself. I'm 32 years old with no history of any major health problems. I went to the Neurologist a few weeks ago initially because I've been having dizziness and fatigue and a feeling of muscle weakness for several years now, and my PCP and my Rheumatologist couldn't find anything wrong with me. A week or so before my first neurologist appointment, I started having tingling sensations in my hands, with some light burning on occasion. I had maybe two episodes of this lasting a few days in the weeks before I saw the neurologist, so when I went to my first appointment with him, I mentioned those symptoms in addition to the dizziness and fatigue/weakness I'd been experiencing.

He suspected a vestibular disorder, but he ordered an MRI (at my request), blood work, and an EMG. My MRI was clean, and my EMG was normal. During my EMG, he was debating with the nurse on whether or not to test some nerve (I can't remember which), and he said, "Well, we'd only do that if she were having burning sensations, and she's not." And I spoke up and said, "Actually I have had a couple of episodes of burning." And he said, "Well, it might be small fiber neuropathy, but that wouldn't show up on an EMG," and that was all he said about it. The EMG was normal and they sent me on my way.

I didn't know what this condition was at the time, so after I left, I went home, Googled it, and freaked out for the entire weekend, because I started worrying that I was going to be in terrible, constant pain for the rest of my life. So this past Monday, I scheduled another appointment and asked the nurse to have him call me. When he called me back, I said I wanted to schedule a follow up with him to discuss what he mentioned in my EMG, because I was very concerned about it. Apparently the receptionists were supposed to schedule a follow up appointment with me regarding my blood work, but they never did, so he thought I was calling to discuss why he requested the follow up, when I hadn't even heard anything about my blood work being abnormal.

He said that I showed "slightly positive" (his words) for anti-sulfatide antibodies which would explain why I was having tingling and burning, that he could discuss treatment options with me but they weren't really all that effective, and that I could try IVIG if I wanted to. This whole thing has kind of surprised me, because I've had these symptoms for maybe 6 weeks tops, and at the time I saw him, I'd only had a couple episodes of tingling that didn't go away within a few minutes. Of course since I found out about this, it seems like new tingle has been popping up every day, and last night, it started happening in my calves/feet, which has never happened before. I actually got so worried that I almost went to the emergency room, but I took a Xanax instead and walked around for a few minutes, and that seemed to help.

I've been tested for auto-immune diseases, as my family has a history of Sjogrens and Lupus and RA. I've always shown negative on those tests. I've had my B12 and Vitamin D levels tested, and while I don't know what the B12 number was the last time it was checked, I was told it was rather high. The neuro tested this too, so we'll see what he says on Monday. My vitamin D level was 17 last time it was checked in February, so I've been taking 50,000IU of Vitamin D2 for the last 4 months. This is in addition to having taken the same dosage for 9 months before that, and my level was STILL only 17 in February. Granted there was about a 4 month break between the first nine-month dosage and the one I'm taking now, but still. You'd think it would've been higher than that. I've had a history of B12 deficiency and iron deficiency in the past, so I'm going to request that he let me know what those levels are when I see him Monday as well.

I guess I'm just wondering what I should do next. He hasn't really told me what kind of neuropathy I might have, and he only mentioned small fiber in passing. I'm wondering if there are specific things I should be asking him to test for, if he hasn't tested for it already. I have a long list of questions for him. Neuropathy doesn't run in my family, I've never abused alcohol, I've never had chemo, I don't have HIV, I'm not diabetic that I'm aware, and I've tested negative for auto-immune disorders every time I've been tested, which is several times. I know a lot of people never find out why this happened, but I'd like to give it my best shot since these symptoms are so new, and since I can still feel everything. The only kinds of toxins that I may have been exposed to are Levofloxacin and Cirpo (taken a few times in the last year, had bad reaction to Levofloxacin), and the treatment I had to do for H Pylori last year.

Sorry this got long, but I'm so confused and I have so many fears and questions. I feel like this is consuming all of my thoughts, and I can't do anything without worrying constantly about this. I know there are a lot of knowledgeable people on here who have been through this, so I'm hoping someone can point me in the right direction. Thanks for reading, and any advice or encouragement is appreciated!

Deanna

Welcome to NeuroTalk:

I see some things you can do right now.

1) Stop the useless Vit D2, 50,000 IU because it doesn't work in humans. Instead do D3 OTC and the dose needed you can figure based on your test results. 1000IU daily D3 for every 10 points to raise. Use 50 as your goal for now.

2)I am suspecting you will be low in B12, as you were in the past.
So here is the B12 thread,
http://neurotalk.psychcentral.com/thread85103.html
here is the link to the new B12 video on YouTube:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

So after you read my thread, you'll be prepared to accept or deny injections of synthetic Cyano form from your doctor. Instead using oral active methylcobalamin is the best way to go for less money and better levels.

3) People are often also low in magnesium and don't know it.
This is very common. You can soak in epsom salts, use a magnesium supplement (not OXIDE form), or use the new Morton's Epsom Lotion, to bring you up to better functioning.
This may help with the Cipro and Levaquin.
Those two drugs are quite toxic to the nervous system and may have damaged you. Don't use them anymore unless there is absolutely a huge reason to. They damage DNA and mitochondria in your cells. If you took those drugs with an NSAID like ibuprofen or whatever, or steroids the damage can be greater.

Some people on our PN forum here have huge response when the proper Vit D level is raised. Let's hope you do too. The form doctors still prescribe (D2 ergocalciferol) is a waste of time. So get your D3 at your local pharmacy, or online (iherb, Puritan's, Amazon whatever), and do that ASAP.

B12, Vit D and magnesium, are the first 3 nutrients to fix.
This is my fluoroquinolones thread for you to read and follow the links on it to other information:

http://neurotalk.psychcentral.com/post661103-2.html

Thanks so much for your response, mrsD!

I've read a great deal of the B12 thread already and am purchasing the Jarrows brand. I'm just waiting to find out what the blood test results say before I start taking it regularly. My last doctor said it was high back in January of 2012, but I'm requesting those records be sent to my neurologist for my appointment on Monday, and I'd love to know what she actually considered "high," as well as comparing the two to see if my levels have gone down since then. B12 was so low a few years ago that I did take injections once every two weeks, but they stopped when my levels were "normal." Have to say, I never really did feel much of an improvement in terms of energy, even with those injections. Maybe "normal" wasn't enough for me?

And yes, the D2 doesn't seem to be doing anything for me! I was shocked that after nine months of taking a huge dosage that it was still as low as it is. Thanks for the tip on magnesium too! I'll be sure to add that to the list of things to mention on Monday.

RE: Cipro and Levaquin: I remember reading the warning label and being kind of shocked that those were being prescribed for a simple UTI, which is what I took it for every time I had to. It didn't occur to me that those may have caused some of this until I saw someone else mention it on here. I've taken both of those maybe three or four times in the last year. When it was Levofloxacin, I actually stopped taking it after three days and asked my doctor to give me something else, because I felt like I was having terrible side effects. Her advice to me was to keep taking it with plenty of water.

I ignored her. lol

Anyway, thanks so much again for your advice. I'll be taking it, I'm sure!

Hi all, from a newbie on this board, dealing with neurapathy and a few other things. Helpful info here, thankx. Be well!

Firstly, welcome and I am truly sorry you are going through this. We have some things in common, though! Sometimes that helps, just to know. I have family history of RA and scleroderma (CREST variant) on my mom's side. I started having sensory neuropathy at age 32 (now I am 43.) Mine was picked up on EMG, however, since it was long-fiber (the sural nerve.) I have tested negative for most autoimmune tests, the only exceptions were a mild-positive ANA and an B2 glycoprotein 1 (IgA) which is a marker for antiphospholipid antibodies in 2003 & 2005. I started Plaquenil in 2003 based on these tests, and I don't know if it helped me or hurt me (rare side effect of Plaquenil can be nerve damage.) I stopped taking it 6 weeks ago.

Long story short, my rheumy and my neurologist still think it is autoimmune based. Current labwork is all negative. It does seem to be progressing for me based on EMG results. It sucks to have something and not really know what is causing it.

--if you did show up slightly positive on the anti-sulfatide tests, that avenue should be purused. Certainly there are neuropathies of both large an small fiber that are the results of autoantibodies to components of peripheral nerves.

Do you know if you were also tested for the other known antibodies to peripheral nerve? The Quest/Latov clinical application has a list of these serological tests, as sometimes more than one can be found, and some are associated with monoclonal antibodies (M-proteins):

http://www.questdiagnostics.com/test...ripheralNeurop

http://neuromuscular.wustl.edu/nother/autoantibody.html

Thanks, jenng! I've wondered for a long time if I had an auto-immune condition that isn't showing up on tests yet. So many of my symptoms seem to fit, but like you, they're all negative. I even have the chronic dry eyes that someone with Sjogrens would have, though I realize that you can have dry eyes without it being because of Sjogrens.

It's interesting that you mentioned you were also 32 at the time you were diagnosed. One of the scariest things for me is not knowing what this will mean for my quality of life in 5, 10, 20 years from now. If you don't mind me asking, what has your experience been?

Thanks for your response again! It's comforting to be able to talk to other people who've dealt with this.

Thanks, glenntaj. I don't know exactly what I was tested for, but I'll definitely ask on Monday. Are you saying that these are the tests that should be run, if they haven't been already? There's so much information and it's all a little confusing to me right now, so I just wanted to be sure! lol

Autoantibodies to Peripheral Nerve Antigens

Asialo-GM-1antibody
GD1a antibody
GD1b antibody
GM-1 antibody
GM-2 antibody
GQ1b antibody
MAG/SGPG antibody
Sulfatide antibody

Thanks again for your responses!

Deanna

if your neuro suggested IVIG as a treatment option, I would go for it

your neuro obviously is clinically suspicious of an autoimmune dx regardless of what your tests show or may not show

you have a family history + you have only been symptomatic for 6 weeks

the sooner you start IVIG the better the chance it may work and if it does it semi proves an autoimmune dx

just my $.02...ask your neuro Monday to start the insurance approval process to start IVIG

imo, the benefits of IVIG far outweigh any risks and may provide an answer to what is going on with you

Thanks, I'll definitely consider it. It'll be one of the many things I talk to him about on Monday. I have a feeling he's going to be happy to see the back of me after that appointment, because I'm planning to pick his brain a lot. lol

I don't know too much about IVIG. I suppose I wasn't readily considering it as a treatment option yet, because we don't know exactly what this is yet, and the IVIG treatment seemed a little extreme for my symptoms, which include some tingling with occasional burning, and days with little to no tingling at all. Honestly, when he was listing the treatments I could try, it just kind of sounded like he was a little dismissive of ANY treatments, because he said they weren't all that effective. I've only had one one-on-one session with this doctor, so I don't know that much about him yet, but that's sort of the tone he had with me when I was talking to him last week on our call. Remains to be seen whether he's one of those investigative doctors, or one of those who'll just prescribe you more medications and send you on your way. I'm hoping he's not the latter.

On a similar note, anyone know of any good doctors in the NJ/NYC area? Right now, I'm seeing Dr. Miller at the NJ Neuroscience Institute at JFK.

Deanna,

I know, the worry about the future is unfortunately something that tends to stay with you having this condition.

From age 32-39, I primarily had just pins and needles sensation in my feet and occasionally my fingers. My eyes seemed drier and also mouth, but not nearly as dry as a Sjogren's patient. I always tested negative for Sjogren's antibodies, but the pattern of neuropathy fit the profile. From age 39-41 I dealt with parasthesias in my face and tongue--the left side of my face would feel numb, and I had jabbing pain under my tongue. Also had frequent headaches with this. My neurologist treated it as atypical migraine, and started me on amitriptyline and verapamil, which really helped!

From age 42 until now, my neuropathy pain has seemed to ramp up. Although I have sural nerve damage in both legs shown on EMG, my left side seems to be the one most actively affected. Now I have burning, stabbing, tightening pain in the foot, along with numbness. Some motor involvement has cropped up in the last 6 months--my last 3 toes are difficult to move, and I have muscle cramps and some twitching. I get mild ankle swelling on both sides. My arches are seeming like they need more support, and this may be to some mild muscle wasting.

They are monitoring me through EMG's, but no mention of IVIG. My doctors are probably more conservative, but I have been to the University teaching hospital for EMG's and exams. My feeling is they are seeing if the weakness will spread from my toes or not. I am walking just fine, and passing their clinical strength testing. My treatment right now is just symptom/pain control. I have started the supplements suggested by this forum.

My recommendation, since I have 11 years on you--keep at a healthy weight, try gluten-free to see if your symptoms improve at all. Keep physically fit with a sensible combo of aerobic, low-resistance weights, and stretching. And, if you can, try not to worry. That part is incredibly hard!!! But I look back at my worrying and it helped nothing and I can't get that time back. At least if you do your best to care for your body, you know you are doing what is in your control. Oh yes, and listen to your inner voice--if you have a doctor who isn't measuring up to your needs, absolutely shop around until you find someone who is willing to look after your best interests. Feel free to PM me anytime.