I will try to be as concise here as possible to explain my situation and hopefully get some insight from others:
28 female. I had a progressive Stage 3, possible Stage 4 Sarcoma in my leg at age 10-12. I have been in remission since. I had extensive radition therapy, a bone graft and muscle removed from my right quad and knee. Did not undergo chemo.
Diagnoses: Hashimoto's Hypothyroidism (2002), Primary Sjogren's Disease (2008), Mixed Connective Tissue Disorder (catch all of other autoimmune symptoms).
I am positive for the SSA & SSB antibodies. My ANA titer and SED rate are almost always elevated. I am positive for the RA autoantibody, the LA (Lupus Anticoagulant).
During my second pregnancy, I had a bad flare; pregnancy usually diminishes autoantibodies showing up. I am in my third trimester of my third pregnancy now and flared during first trimester and have remained positive for sjogren's throughout.
I have not been diagnosed with Lupus. I do meet their minimum criteria, but a diagnosis has not been made. I have had no liver or kidney issues at this point in time.
In 2010, I experienced my worse flare, and severe dizziness, vertigo, fatigue, strange tingling sensations, and and wet/cold symptoms appeared. I saw several specialists and finally a neurologist who after doing an exam and finding reflex abnormalities, severe balance issue, and left to right differences in sensitivity ordered an brain MRI and a BAER test. My brain MRI came back perfectly normal. My BAER test showed a left lobe abnormality and he recommended a Qeeg and I have not yet had that done (at the time I couldn't find a qualified specialist under my insurance for it).
Since then, I have improved my symptoms with diet changes (now reside in a normal weight range of about 123 pounds at5'5"), stress and environmental reductions, etc.
Over the last 9-12 months however, my flares are becoming more drequent and the neurological symptoms are returning with a fervor. My husband noted today that my abnormal pauses and word switches are increases a lot lately. I now am a stay at home mom. My life is not without stress but compared to the past and others, I live quite comfortably.
I am going to see another neurologist and hopefully get a repeat BAER and Qeeg... should I be asking for a spinal MRI as well? it was never done. Originally, My Neurologist said my symptoms were spot on for MS. He was shocked my brain MRI showed no lesions. But, then immediately ruled out MS or any other enurological damage and said it was a functional issue.
To summarize my neurological symptoms:
- sensations of tingling, my legs and arms jerk when sitting.
- I sometimes have trouble finding the right words or saying what I am trying to get out.
- I switch words without realizing it (examples: repeatedly say "sunpass" instead of "fastpass" at disney world even immediately after being corrected. "Spiderman" instead of "Superman" and sometimes having trouble saying my husband's name, which is a very simple name). Unless someone tells me otherwise, in my mind, I have said the right word.
I am unable to work due my autoimmune issues and the neurological issues that go with it. As a professional writer, you can't just miss work because its too hard to get the words out today, or looking at the computer screen literally makes me sick.
Should I rule out MS? Should I ask for a spinal MRI? Can another autoimmune disease cause these normal MRI, abnormal BAer, abnormal neuro exams?
Well, whether a spinal MRI needs to be done or not is a decision to be take after a clinical evaluation of the current symptoms. With the symptoms, other possibilities that may need to be considered include peripheral neuropathies, myopathies, micronutrient deficiencies, heavy metal poisoning, stress, anxiety, a few neuro-degenerative conditions, neurological issues associated with auto-immune conditions etc. I would suggest getting this evaluated by an internist initially and depending on the cause diagnosed/ suspected, it can be managed accordingly or specialist care may be sought.
Hope this is helpful.
Welcome to the club of all of us who have many questions and don't know what to do. Your symptoms sounds a lot like MS or any other neurological problem.
My neurologist recommended me a Brain MRI and a Lumbar Puncture to rule out MS and they did a lot of blood tests to rule out other diseases (Lyme disease, Citomegalovirus, Syphilis, etc). They also ordered an EEG , a nerve conductive testing and a memory test.
This link could help you to determine if you have any other symptom of MS:
I don't have a MS diagnosis yet but 14 out of these 16 symptoms are positive for me so I 'm really worried.
Have you visited a rheumatologist? I just went to one a he ordered a lot of specific tests for lupus and other autoimmune diseases and ruled out lupus, arthritis, Sjogren and fibromyalgia.
I'm still on a watch list for MCTD because my ANA and Anti RNP were positive during previous years but rheumatologist told me that now i don't have any signs of inflammation. Who diagnosed you with MCTD and Hashimoto? My TPO (thyroid antibodies) has been very high during the past 2 years and everybody tells me I probably have Hashimoto but they don't give me any treatment because my thyroid hormones are still normal.
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