Too many life long undiagnosed issues, and so little patience.
I am a 36 year old female with Asperger's. That's the one thing I don't have questions on. My other symptoms are: same headache since birth, severe insomnia, whole body muscle weakness, chronic pain (neck, shoulders, lower back), sensitivity to cold, "unspecified movement or tick disorder," fatigue, severe pain in lower part of legs when walking up inclines, severe allergies/sinus issues, and cold hands and feet (just to name a few of them). On top of that, I have been diagnosed with the following: Interstitial Cystitis, Perniosis, Psoriasis, Eczema, Vasomotor Rhinitis, Insomnia, and RLS. No one will diagnose me with anything helpful. Everyone wants to break apart my symptoms as if they are all unrelated. I believe that many of them are related (maybe not all, but several). I am tired of Drs saying things like, "Oh, you can't sleep, go see the sleep doctor. Oh, you have chronic muscle pain, go see the neurologist." I live in an area without a lot of specialists for stuff like I may have. Why can't there be a Dr here that tries to look at the symptoms as a whole? What can I do????? If someone has 30 symptoms (for example), isn't it more likely that they have 2 or 3 issues and NOT 30???
Many of ur symtoms sound like Chiari Malformation, but those symptoms can be a number of other things as well....but the Aspbergers side of it makes me think more toward Chiari as I know it can appear to be that ......
Do see if u can get a MRI of the brain ....ask ur PCP...and request copies of all testing and reports as u get them done so u have all the info to get 2nd and 3rd opinions if necessary.
I have copies of most of my medical records over the years. In 2004 I had an MRI Brain w/ + w/o Contrast...the very last sentence in the findings is "No Chiari malformation." I have done research over the years trying to come up with possibilities (that was one of them until I saw the 2004 MRI results). The other things that I am considering are Myasthenia Gravis, Graves' Disease, MS, Encephalitis, B12 Deficiency (those tests came back normal too), Metabolic Syndrome, etc. Nothing ever found yet. Also recently checked for Hashimoto's, but my TSH is more on the high end (around .49 - 2.+), so that was a dead end too.
So, don't know. :(
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