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Could it be MS?
27 year old female. I’ve been feeling like I’m going crazy for the last 4-5 years. Especially lately. I’ve went to gp doctors with complaints of something wrong several times over the last couple years. Referred to 2 neurologists. GP says it’s anxiety or migraines, maybe hormones. First neurologist says it’s not anxiety or migraines and I seem fine. Second neurologist a year later says they have no idea, could be caused by a vitamin D deficiency but they didn’t look into it. 2 MRIs done. Second neurologist said their first thought was MS but they looked for it and saw no signs. Actually told me I could waste my money if I want but I likely won’t get answers. Go to OB/GYN, not a hormone problem.
Here’s what going on: I have episodes of symptoms that last for a while. Of course when I finally go to a doctor they go away and stay away for a while and then start again. Symptoms have mostly been different each time but have included random sharp pains all over my head that last for seconds. Pain in my right temple that last for several minutes. Tingling/numbness in face/ jaw. Tingling or numbness in limbs, hands, feet. Random lighting feeling in spine, especially if I’m arched forward, only on occasion. Moments of “broken” vision, blurry/empty spots in vision that clears up after 20 minutes (this was explained away as an optical migraine). Lately it’s been random moments of dizziness that seem to hit out of nowhere. Moments where my legs feel heavy like I’m going to fall over or I feel like I’m leaning to one side, but I’m not and I don’t. Admittedly, I have noticed I can usually pull myself out of the feeling of I’m going to fall over when I walk. For example, I get a fatigued/dizzy feeling like I’m going to fall over and I feel like I need to sit down or hold on to something to stabilize myself. But if I sing a song in my head, I can typically walk to where I need to no problem.
I know this sounds crazy. I feel crazy and all the doctors make me feel crazy. Could it just be anxiety? Or could something actually be wrong and it’s giving me anxiety? I recently started looking more into MS and I’m really worried I’m experiencing early symptoms but I feel like no one takes me seriously.
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The symptoms of MS and SS are very similar. Please check for SS. CT scan can show iron deposits on your cerebellum and blood in your spinal fluid, then you have SS. Google it. I hope and pray the best for you.
What is an SS Steve? Hope and pray for all the best too. Xx
I do not know if this could be relevant, or if you have been tested for this. I had suffered for 12 years with sporadic bouts of leg paralysis, ataxia, hip joint pain after a bad infectious mononucleosis infection that hospitalized me. I had been tested over and over for things like Lyme, MS, Lupus etc (all came back normal). After seeing many neurologists, rheumatologist and endocrinologist, I was was tested by a GP hospitalist for gluten, and found out that I have Celiac Disease. (Simple blood work followed by endoscopy while remaining on a gluten diet is all that is needed). This revelation has shocked my specialists. Celiac Disease has over 200 symptoms unrelated to digestive issues and is often a mimicker of other diseases and can be the cause many neurological problems. It often pairs with other autoimmune
illnesses. I don't know if this could be helpful, but it may be worth looking into. I am so sorry you are going through this and I hope you find answers and feel better soon!
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5 ReactionsHow was your blood test for Celiac? I considered it, but test was negative.
Normal value is considered, I believe, between 0-3 for Transglutaminase. Over 30-40 is almost always indicative of Celiac Disease. My level was over 100. Below is a list of the serologic tests for celiac disease. My GI ran all of them on myself, as well as all of my first degree relatives (this disease runs in families). My young daughter also was found to have Celiac and was asymptomatic.
tissue transglutaminase (tTG) immunoglobulin A (IgA) and tTG immunoglobulin G (IgG)
endomysial antibody (EMA) -IgA
deamidated gliadin peptide (DGP) -IgA and DGP-IgG
If you were tested while you were consuming at least the equivalent of one slice of bread (made with wheat flour) per day for three months, and your values were negative, than chances are good that you don't have a problem with gluten. If you were tested while not consuming gluten, you could have a false negative. Unfortunately, gluten has to be in the body's system for an accurate test result. If you're looking for more information on Celiac and gluten intolerance, I highly recommend Dr. Peter Green's book, "Celiac Disease: A Hidden Epidemic". It is "hidden" because it is thought that roughly 50% of people who have this disease are undiagnosed or misdiagnosed. Many people are completely asymptomatic. Others, like myself have very strange and seemingly unrelated symptoms. I hope this helps! 🙂
I will add that there can be other reasons why there could be an elevated Tissue Transglutaminase test.... So there are some false positives.