Would love some input and guidance. Neuro told me I most likely have SFN but felt it was not necessary to do a SFN biopsy. Told me to return in 6 months. Told me not to believe everything I read on the internet regarding SFN. Told me supplements will not help. It seems as though many people are getting good results with the right supplements. Is this something that could help me? Shortly after the neuro, saw a new PCP, who DXed MCTD. New PCP did not order any new tests and told me that I did not need to take the usual meds for MCTD or see a rheumy. Have had SFN symptoms for 3+ years. Have very few MCTD symptoms. Can MCTD cause SFN? If I really do have both of these conditions, what can I do to improve the SFN symptoms? Also, would love to hear from anyone who has MCTD...what are your symptoms and how do you manage them?

Hi Karate Mom,
I have MCTD and have just been dx with neuropathy. I believe by descriptions that I've seen that it will be SFN. I have had my MCTD dx for 6 years. My finger started turning white and going numb. Then my finger on my other hand started doing it, and the first finger swelled up. I complained of body pain to my chiropractor a lot, and finally one day he said "now I think you need to go to a rheumatologist." I went to a rheumatologist who did not do any tests. He told me I had rheumatoid arthritis, and if I listened to him I would be okay. He put me on methotrexate! It was a complete change in my life. And I wasn't feeling much better. I kept going in and getting steroid and metho shots. At one point I went to my primary care doc, because my pain was not joints, but muscle - and after I said NO xrays and NO MRIs had been done, he said, I think you need a second opinion. I went to the rheum's office that he suggested, and she ordered more tests. She ordered extra blood tests that showed I do not have rheumatoid, but MCTD definitely. I thought it was going to be scleroderma because of my fingers, but it was MCTD. She put me on plaquenil, stopped the metho and started me on medrol. We got it under control, and then just kept me on the plaquenil. Over the years I have had raynaud's flare up on fingers and toes, I have high anxiety. I already had OCD. It got worse. And I have had severe fibromyalgia (is it really fibro? rheum says so). Twice the pain was so unbearable I woke up vomiting relentlessly and went to the ER. But most often, my shoulders and back of head, sometimes for days, then go away and leave me alone for a while. I started seeing an acupuncturist, and he put me on Mobility 2 - a chinese herbal that I don't want to live without. These herbal pills STOPPED my fibro. I went in one day after kayaking for the first time, and said I think I'm going to feel it tomorrow. He said no you won't. And I NEVER felt the muscle pain. It just stopped. AFter a while I might feel it very mildly, or if I forget to take the herbals, but never again as bad as I had it. My raynaud's will flare up sometimes too.
Sorry for the long book I've written, I seem to ramble a lot. But my symptoms are raynaud's, pain in fingers, fibromyalgia, insomnia (severe), and now this neuropathy is going on. We have kept it in check with plaquenil only, and I use ambien to sleep. I have been on numerous sleep meds, and have tried to get off them but then I will get sick from not sleeping.
I'm telling you my whole story because if you haven't had tests, you should. At the very least get some blood tests to prove or rule out MCTD. MCTD is an overlap with symptoms of lupus, scleroderma, and polymyositis. According to my rheum, if the disease is flaring certain numbers go up in the tests - my numbers have been normal for a long time now, enough to where my rheum had suggested trying to stop the plaquenil When I did, I felt stiff fingers and started it again. Then this summer I stopped plaquenil, and suddenly I have foot problems. Since you are having something that COULD be related to MCTD, you might want to make sure that you don't need any meds.
Other than this, I feel like my MCTD has been minor. If I truly have fibromyalgia, and that is separate from the MCTD, then most of my problem has been fibro. Plaquenil and Mobility 2 have kept me going.
Ask your doc if it's definitely MCTD, I am not up on the blood tests but there will be one that is positive that proves it is MCTD and not lupus or something else. If your doc had the blood tests that said this, then yes you could have MCTD without really having other symptoms.
I hope you get good results trying to calm your SFN! If you have any questions about MCTD that i can help with, let me know.

Geraldine

This is becoming a mantra in the medical community. I don't necessarily disagree with it, BUT (<-- Big "BUT" ) there's a difference between not believing everything you read and not believing anything you read.

Medicine knows a lot, and is learning more every day. But still, with all our technology, there is still more that medicine doesn't know than it does know. And research into what medicine doesn't know is more often driven by economic$ than by altruism; there is more money to be made on treatments and drugs that are patentable than on cures and natural supplements that aren't patentable.

A lot of people on this site are helping themselves with supplements and by sharing the information they glean here and elsewhere. Doctors often aren't aware of it because it is not (yet) taught in medical schools, and they are also taught to dismiss/reject anything that is not taught in medical schools. One of the major tenets of the Hippocratic Oath all doctors take is "Do no harm." I'm not a doctor, but I've taken that tenet one step further in my own journey; "If it can't hurt to try it, then it can't hurt to try it," which presumes that whatever it is I'm going to try can't hurt me to try. Ironically, this usually means discussing it with my doctors (who are more open-minded than many). It's difficult for anyone to say unequivocally that something will help you, but there may be some things that are worth a try. Reading the Sub-Forum and Sticky Threads in the Peripheral Neuropathy forum are good places to get ideas for things that might help; not just supplements, but medications, tests, questions for your doctor(s), and any/all manner of useful tips & information.

It beats me how the new PCP could make such pronouncements and disagree with the neuro, but... http://neurotalk.psychcentral.com/post718933-5.html
Googling: MCTD peripheral neuropathy suggests that PN (and Trigeminal Neuropathy) can be symptoms of MCTD, so that may answer part of your question. You might google it yourself and see what you think based on your history & symptoms. Another tenet of medicine is, If you can't treat the disease, treat the symptom(s), which is what many of us with "idiopathic" PN are doing. As the disclaimer goes: Individual results may vary.

We're all on our own journeys here; this is a good place to visit and revisit,

Doc

Hi, Geraldine! Thank you so much for telling me your story! It really helps to hear what other people experience because google searches turn up so little information on MCTD and it all tends to be the same. It sounds like you have been through quite a lot over the past six years. I hope you are doing better now. Are you still off of the Plaquenil? How are you feeling without it? I have had all of the blood tests and they all came back normal except for an ANA test that was 1:80 speckled pattern (not sure what it means but the lab paperwork says positive). Two neuro's and an MS specialist (yep, went through a full MS work-up awhile back) dismissed the ANA test as nothing. Anyway, I've never had the swollen fingers or rashes or anything like that. I have a lot of muscle pain, very weak legs, bad balance, difficulty walking, calf and foot cramps, numbness, pins & needles all over and I could go on forever, but I won't bore you. Do you feel like you've been able to manage your symptoms fairly well enough to resume your usual activities? What rate of progression can I expect? Do you feel as though MCTD has interferred with your ability to do things you want to do? Hope you're having a great day and thanks!

Thanks for all the good info, doc! I loved the quote in the link! I understand what you are saying, so I will do some reading on the supplements and see what I can add to what I currently take. I actually was dxed with trigeminal neuropathy by a specialist. He told me that I had a 30% increased risk of developing UCTD b/c of the trigeminal neuropathy dx, but since I didn't fit the symptoms, I thought it was just that...an increased chance of developing it. Then I ended up with a dx of MCTD by a pcp...so confusing! Anyway, I suppose I have some reading to do and perhaps some questions after. Thanks for taking the time to reply and for all the insight! I appreciate it! I hope you had a great Thanksgiving!

Hi Karate Mom,
sorry I have not responded sooner. I had a deadline that has kept me super busy this past week. From what I understand, UCTD is what they diagnose patients with when there isn't one specific autoimmune that they have narrowed it down to. So if you have overlapping symtpoms of 2 or more diseases, (as I understand it) doctors are more likely to say it is UCTD, or undetermined. If you have the specific positive tests for MCTD, that is different. MCTD is its own specific disease, with overlapping symptoms. I honestly have not done a lot of research, because for some reason this is the one problem I have that I haven't read up on every website possible. Although, you are right, there is not much info for us out there. When my rheum said not to read a lot on it, (I guess to keep me from freaking out? - I have OCD too.) I actually listened to her. Because it seemed more complex than other things. And my rheum said I had a mild case of it.

I am currently back on my plaquenil. I went off it for 2 months. I also went off my chinese herbals for the same timeframe. During those 2 months, my feet started bothering me and my neuropathy got to a point where I began to think it was definitely something other than just fibromyalgia! Before this my rheum and a neuro I went to both said they thought it was fibromyalgia. I am really upset with myself because I think I should have stayed on the plaquenil. I am not sure why exactly I stopped, except other than my wisdom teeth I felt really good. I am not completely convinced that part of my problem wasn't the antibiotics, or the diflucan that I had been taking. I do think my foot problem could be a fungal problem that started or became obviously painful during my diflucan usage. Not sure and no doctor believes that it's possible.

As for being able to continue activities, I have been able to up until this past couple of months. The numbness/coldness has put a damper on things. I love to kayak, but am scared of any drops of cold water touching me, and not sure how to hold my feet in the boat. It seems I either have Raynaud's affecting both feet entirely, or vasculitis? I can see where my feet are turning white. I still do not understand what is going on with me. My neuro appt isn't until Dec. 27. I will say for the past 4 years I have not been able to have a normal sex life. I have had frequent yeast infections, vulvodynia, PAIN. My rheum doesn't think any of that has to do with my meds or MCTD. I think she might be wrong. She has long said my pain is caused by fibro, but she has also said my tingling is caused by fibro too. Not until now has she diagnosed it as neuropathy.

ONE THING to keep in mind... MCTD is not common so I don't believe there are many docs who know a lot about it. If your docs continue to confuse you, maybe look for another eventually? I asked my rheum a question once and mentioned "other MCTD patients" and she said she did not know, as I was her only patient with MCTD. We are in a very populated area, but my first rheum completely misdiagnosed me so I'm not very keen on looking around, especially since I don't have real insurance.

I hope as of now you have more answers. Let me know if you have any questions I can help with. I hope you are feeling well right now. I'm feeling better.

Hi, Geraldine. Wow...sounds like you have been through soooo much. It really sucks, doesn't it? I can totally relate. It's like the snowball effect - the problems just keep coming and coming...ugh! I'm glad you're feeling better!

I wish I could say that I was feeling better, but things are the same. Actually, one thing has sprouted lately that I am having difficulties with - varicose veins (ugh again ). This is a new one for me and I'm not sure why they've suddenly developed. One leg is much worse than the other. Very strange. Have you had any difficulties with varicose veins? I bought compression stockings and am wearing them, which helps, but clearly I will need to have these removed at some point. They hurt and I have no tolerance for pain!

My husband thought it would be a good idea to see a rheumy to either confirm or deny the PCP's DX. So, I have an appt. scheduled. I hope that he will run the proper tests so that we know for sure what we are or are not dealing with.

One more question, if you don't mind. You said you've been on Plaquenil on and off. Have you ever had any eye problems b/c of it? Are there other meds they can give you instead of Plaquenil? If I need to be on meds for this, I'm afraid of Plaquenil b/c I have glaucoma and don't want to take any additional risks with my eyes.

Hope you are continuing to do well!!! Thanks for all the great information! Karate Mom

Yes, everything just keeps coming at me. A couple of years ago I went to see an acupuncturist. He surprised me one day by telling me (after the first time I ever went kayaking) that I was NOT going to feel any pain the next day. I had fibromyalgia pain really bad at that point. I was skeptical but took the herbals that night, and I NEVER had the pain from the kayaking, also I NEVER had that SEVERE pain (like a mac truck) again. In fact, my pain diminished so much, no other drug had made me feel so good. I was finally able to DO things again. I do still get the same pain, mostly in my shoulders, but not as severe. My neck pain which used to be stiff and painful all the time went away too.

At that point I did have a turnaround. I started more supplements, took my plaquenil on time everyday, and was kayaking/exercising, even started walking. Some of my symptoms, including tingling on my face and burning on soles of feet, plus neck stiffness, disappeared. They were gone for a while, maybe a year, and then reappeared this summer. Coincidentally right after I stopped my plaquenil and chinese herbals.

Anyway, today I went back to my acupuncturist. Of every doctor I've ever seen, I always feel best after seeing him. He listens to every word I say, and remembers everything (or at least looks over his notes before bringing me into his office). He gave me a new herbal that is meant for my newer symptoms, weakness in the legs, cold/numbness, neuropathy, without visual signs of edema. He said my legs should feel a lot better in 2-4 days. I also am decreasing my other chinese herbals. This is exciting to me. The first difference I have noticed already is that my coldness is not here tonight, but I have had slight burning (which I haven't felt in a while). I'm pretty sure this herbal is going to work on my circulation.

There are definitely things you can try if you can't take plaquenil. And there are a number of other medications that a rhuemy would prescribe. Sulfasalazine is one. Plaquenil doesn't work for everybody, and some people can't use it because it bothers their vision. I have gone to the eye doctor once a year for plaquenil checks. I have been fine in the 5-6 years that I've taken it. Just recently they checked me for glaucoma because I am at higher risk with the type of vision - nearsightedness - and whatever other clues the doctor had. I checked out okay. I do not know if glaucoma would affect taking plaquenil, but it might just based on your feelings about it.

I think it is a good idea to see the rheumy to confirm your dx. Supposedly the tests will show a marker that is NOT there for other autoimmune diseases, like lupus or scleroderma or RA. I have asked my rheumy countless times if she's SURE I have MCTD and not one of these other diseases. She says it is definitely MCTD. However sometimes I feel she disregards some of my symptoms as not related because I don't have lupus. I believe I continue to have these overlap symptoms of a number of the diseases.

It's interesting that you mention varicose veins. I just noticed the last couple days that I DO think I have some in my ankle areas that get weak. And that coincide with my numb path. The tops of my feet seem to be more veiny as well. And for the first times I noticed my hands bulging, when I raise them the veins go down in 2 seconds, then lower them and they bulge again in 2 seconds. I'm worried about this. I seem to feel better when I wear looser socks though. I don't really know what compression socks are yet. Are they tight?

Let me know when you get some more answers! I hope some of this info helps.

Geraldine

P.S. When something is really bad, I remind myself that "this too shall pass," and that helps me to keep going. Until I got the very painful neuropathy and read that the tests might never show anything, that got me pretty down. But I'm going to keep trying and depending on how I feel this week I may put my neurology appointment off a month. I do not have the money for an MRI or Nerve Conduction Study, and I'm afraid that might be all they want to do at first. So I may have to wait. I can only do what I can do!
Hope you feel well too.

Hi, I have MCTD and taking Plaquenil since 2006 when I was diagnosed. I am also on synthroid but I do not have Hoshimoto disease (my mom does) and I have fibromyalgia. I take magnesium daily (because I read it is good for autoimmune disease) and naproxen for inflammation. I don't know what will happen to me from this disease, I'm 61 and active. I'm glad I found this sight because I don't know anyone that has this disease and don;t know much about it. My doctor said it's wait and see what other symptoms, if any, come up. I did have frozen shoulder on both shoulders, and found when I eat white flour I have vaginal itching. I didn't associate the painful intercourse with the fibro. Something to ask my gyn.

I saw an edocrinologist the other day for something unrelated to PN, I asked him about my PN and he said to take B vitamins.
Zygo