Hello! I'd love to hear feedback on my situation, particularly if anyone has experience with neuropathies related to autoimmune disease.
I'm 29 years old, and was perfectly healthy until recently! I am thin, don't smoke, and don't take any medications. But for the last 5 months I've been having daily symptoms related to the nervous system. It started about 2 years ago with some tingling in a patch on my back that would come and go, then I had a major "episode" while pregnant with my daughter last year. Out of the blue I suddenly lost my ability to understand and produce speech, felt confused, forgot words, and had the oddest sensations in my body like something was pressing down on me. I got tingling in my arm, both legs, and one side of my face and scalp. My vision was a bit blurry in one eye and I got very weak. I recovered completely after about 3 hours. My doctor ordered an MRI, EKG, and heart doppler, which were all normal so she decided that it was a silent migraine.
I began occasionally having heart palpitations (with no obvious trigger) that would resolve once I coughed. I started getting brief bouts of vertigo and nausea. Then I had a week-long migraine (headache, tingling, vision problems). Swollen hands and feet followed for a few days along with a burning sensation in the backs of my hands. Then in November of 2010 I had an episode where I suddenly became very cold and couldn't stop shivering. My hand and arm went numb and tingly, followed by both legs, one side of my face, my lower lip, and tongue. I felt weak and I kept needing to have bowel movements (at least 5 times within a couple hours) and had a sensation like I needed to pee over and over again as well, though I didn't. I had this weird feeling of something pressing down on me though I was also lightheaded. It's hard to describe. We went to the ER eventually and were given a referral to a neurologist. I recovered after about 4 hours so I thought it had possibly been another silent migraine. But the same thing happened again the next day. These episodes occur about 3 times a month now, but I have other symptoms daily.
I get swollen hands and feet in the morning sometimes, occasional joint pain in my hands/wrists, discomfort and cracking in my neck, heartburn and excessive burping, clenching of my muscles (without trying), sudden flushing or feeling very hot, sudden feelings of cold, muscle pain in my thighs, pressure around my cheekbone and teeth along with tingling (one side only), one-sided headaches, vision changes, etc. I also have polyneuropathy in my feet/legs with lessened vibration and temperature sense and this is beginning in my hands/arms as well. I have "severe vasomotor dysfunction" in my hands and feet which results in them becoming very cold and blue and numb for hours at a time sometimes. Lately I sometimes feel like I can't breathe adequately (not wheezing or short of breath exactly - hard to describe).
I have had a normal MRI (brain, spine) and EEG. My bloodwork showed a positive ANA (1:640 speckled) but no other specific antibodies so we don't know which autoimmune disease might be present. I also had low iron and high blood sugar (getting evaluated for diabetes on Monday). The vascular studies were abnormal, of course. I am starting to take a calcium channel blocker for the blood vessel spasms.
The neurologist thought I was getting silent migraines (acephalgic). The rheumatologist thinks I have some sort of connective tissue disease and that possibly my "attacks" (with the dizziness, cold, shaking, weakness, excessive bowel movements, etc.) could mean that my parasympathetic nervous system becomes overactive sometimes. He doesn't know why, of course. I have been to the ER a couple times since this all started and been told "I don't know" by one doctor and "probably anxiety disorder" by another.
My question is, does any of this sound familiar to you guys?! I would love to talk to anyone who has had similar symptoms, as well as hear from anyone who has dysautonomia related to autoimmune disease. Or just hear your ideas about causes and treatment for this type of dysfunction.
Hi...some of what u mention may fall into what I am familiar with, but for the most part I feel u will be better served going to MedHelps http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266?camp=msc
Forum.....the members there all have similar issues and can offer u more insights.
My first thought was MS, like JemmAus mentioned, but your brain and spine MRIs were clear. Has your neurologist proposed having these repeated within a year or two if your symptoms persist?
Another thought that came to mind based upon a lot of your symptoms was lupus. Did you ever have a dsDNA blood test done to rule this out (it's more specific than ANA)?
Otherwise, it sounds like some of your symptoms can definitely be attributed to migraines...but definitely not all of your symptoms. It's just confusing trying to figure out which symptoms are being caused by which condition. Regardless, it seems like the pregnancy tripped some sort of autoimmune disease process or multiple autoimmune diseases, so don't give up until you've figured out what's going on!
I'm sorry you're going through all this stuff too! Initially when I went to the ER with my first episode the doctor mentioned MS because he said, "Anytime we see a young woman with tingling, we think MS!" That was how I got the referral to the neurologist. It took me 2 months to get an appointment with him and in the meantime I saw my family dr several times and she was acting on the assumption that I had MS and was even wondering if I ought to start medications for MS.
The normal MRI threw us all for a loop! The neurologist said that usually people with MS will have a relapse where damage is done to the nervous system and then they slowly recover, either partially or fully. Recovery might take days to months depending on whether they've used steroids or not. Then they stay at that level until another relapse occurs months or years later. So he thought my symptoms didn't sound like MS because they come and go from hour to hour or day to day. None are constant.
I think you should definitely get an ANA blood test if you haven't already. Heart palpitations are usually not serious and can be caused by many different things, but swollen hands (esp. in the morning) are often related to autoimmune disease like lupus or scleroderma. The diagnosis of autoimmune disease can take years unfortunately, and sometimes the blood test results switch from positive to negative and vice versa so it's tricky. Many people with lupus and scleroderma have skin problems (rashes, sensitivity to sun, pigment changes, thickening) so that's something to watch for. Personally I have no skin issues though and seem to have an autoimmune disease.
Yes, I had the anti-dsDNA test as well as all of the other autoantibody tests like anti-Sm, antiphospholipid antibodies, anti-Sc70, etc. All were negative. The doctor said this doesn't rule out lupus or scleroderma or other autoimmune disease because sometimes the antibodies are detectable and sometimes they're not. Results can vary in a person over time. He said we'll treat symptoms as they come up and otherwise just wait to see how it develops. I'm not a classic case of any particular disorder at the moment.
The neurologist also thought migraines were causing some, but not all, of my symptoms. It may also be that my underlying disease (whatever that is) is causing the migraines since they came on suddenly around the same time as other symptoms started. One possibility is that inflammation (from lupus, for example) is causing damage to my blood vessels. There is evidence of circulatory problems (spasming vessels) in my extremities and this can also occur in the brain. Vasculitis is pretty serious so I hope that's not what's happening, but it's possible. Apparently it's really hard to diagnose.
Unfortunately, I'm in a similar boat. My doctors think some autoimmune disease(s) were tripped three years ago and they can't figure out what's going on because there are so many symptoms and everything is muddled. While I've always had headaches, my headaches worsened around this time and I began seeing a neurologist. My brain MRI has always been clear for lesions, so he hasn't considered MS as a possibility for me even though I have some left/right-sided sensitivity issues and a tremor favoring my left arm. I had a lot of bloodwork done, but nothing showed up to consistently indicate any one, particular disease process.
At this point, it seems like you'll probably have to wait until the disease/condition progresses to a point where it's more readily identifiable. I guess I'm doing the same thing, now that I think about it. Good luck, and keep us posted.
Much of your story sounds very familiar. I have had Epilepsy, multiple types of Silent Migraines, symptoms of autoimmune disease but doctors so far disagree with scientific evidence that I have that prove part of my problems is related to autoimmune disease. I have had many of the symptoms you describe since I was 3 years old if not younger and I am 37 years old now. Just like your symptoms mine act up and change or go away daily. But my symptoms also follow a yearly and seasonal pattern that has changed little since I was 3 or younger. I have been paralyzed twice from my condition once when I was 13 years old and even worse when I was 30 years old. When I was 30 years old I lost partial use of 70% of my body mostly on my left side and off and on lost my vision in my left eye. In late 2004 a schwannoma on my upper spinal cord and other possibly schwannoma's were discovered in my brain. In December 2004 I had surgery to remove the spinal tumor. After the surgery I regained full use of my body and by the mid-summer of 2005 the year round 24 hour a day headache form of my migraine vanished and my vision dramatically improved in my left eye. Although this was great my body began acting like it did in early child hood where I for every improvement my body makes the silent migraine/autoimmune disease that my doctors will not admit exists causes my immune system to attacked parts of my body causing rapid hair or toe nail growth, skin to split open peel off in front of my eyes bleed and die, and this creates my silent migraine. The left side of my body that is controlled by my silent migraines also over uses many vitamins and minerals including most of the ones you listed. I have had to spend the last 7 years doing my own research and self-testing to find treatments of my own because American doctors want to follow through and help me because either they do not know, they discriminate agents me because I was declared to have epilepsy when I was 3 years old and am viewed as less of a human being, or for legal reasons they do not want to get involved in my case. So this is my struggle. I wish you the best of luck in finding good treatment.
Wow, so weird to see all my strange seemingly unrelated symptoms and the same testing answers, thought from my doctors opinion that I was a unsolveable medical mystery. Even the random pains are in the same places. Wondering if you also have blood pressure swings and actual small temp changes like 97 to 99 or 100 fluctuating throughout the day? I also can't get from one side of my house to the other without feeling fatigued and seeing spots/tunnel vision. This all has been low grade for years, but about 6 months ago, I hit a brick wall. Cant even get out of bed most days without crawling back in shaking. I am an extremely fit 39 year old, had a landscaping business and climbed mountains every weekend. Not now. Now I am lucky if I make it through the dishes without a rest. Any small thing seems to aggravate the weakness, shaking, and sweats. No way to control it all until now. My neuro gave me verapamil for the vision problems he assumed were silent migraines, but the very next day- I was close to my old self. Not 100%, but better. My pt swears it's my autoimmune, but the docs say no. Then today, day 5 of the calcium blocker had a real bad episode of symptoms, along with high bp readings. There were some variations on the ekg, but the symptoms are gone. The er doc wants a event monitor, since my symptoms had eased considerably by the time they got the tests, of course. Wondered if anyone with these has had that test with normal results? So tired of taking tests that go nowhere. Doc appts. weekly for 6 months isn't fun and this is probably the scariest thing I have ever had to deal with. I hope we can find answers.
Wow, when I read that yo have been refered to by Doctors as an "unsolvable Medical Mystery" it hit so close to home wih me it's almost frightening. I would love to talk more with you about this. From one "Medical Mystery" to anther, maybe we can help each other solve our own mysteries. I see that your postis over a year old but I am still hoping you see this. If you do, my name is Rachelle, send me an e-mail to ***@**** and put Medical Mystery in the subject line, then I will know it is you. I hope to hear from you, even if you mystery has been solved by now, maybe it will help me solve mine. Hope to hear from you.
Have you checked your vitamin b12 levels ? These symptoms could all be explained by a low b12 level, which has similar symptoms to MS. Doctors are not massively clued up on b12. There is also a normal b12 level postcode lottery. So maybe check out your level anything over 600 is ok but you should aim for a nice 900 level. Folic acid also works hand in hand with b12 so both need to be on a good level for each to work correctly. Hope you find out some answers
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