Not sure if I am in the right place but would appreciate feedback..

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chestertwpmom

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Hello, I have been dealing with strange and perplexing symptoms the last several years. I have been from neurologist to neurologist trying to seek answers, but every neuro exam is "normal" and MRI is "normal", EMG is normal. I strongly feel I have some type of neurodegenerative dementia process at play, but then someone suggested fibromyalgia and this gave me pause.
The ever present daily symptoms are stiffness in wrists, the pointy ends of my bones at my wrists and sometimes hips, and upper arm muscles, as long as weakness/incoordination (I have an ever present case of the dropsies). I don't have much by way of pain (unless I overdo it with typing). I have had episodes of trigeminal neuralgia type nerve pain that is fleeting, and also burning hands/feet but this has pretty much subsided and very rare for this to occur. I have noticed some handwriting changes-more sloppy, not as fast. I also have mild swallowing issues, mostly on particulate food matter like rice and crumbly chips,etc. I had a swallow study that suggested I have a weak tongue base, but no aspiration (food matter/liquids get in lungs). When I'm tired, or talk too much I slur my words, or my voice becomes hoarse. When I was 8 months pregnant I noticed my throat would be extremely stiff and difficult to initiate even a dry swallow.
My proprioception/depth perception is off. Eye docs are attributing this to an eye muscle "convergence insufficiency' that developed a few years ago (when symptoms started) where my eyes don't align properly to focus on the picture. I do get double vision from time to time. My night driving sucks but I have extreme Myopia. But I have this strange issue where if I'm looking for an object, it might be in front of me but I don't SEE it. It's almost like my brain is not processing that the object/item is there?
I get muscle twitches, tremors and sometimes myoclonic jerks. I also have sleep apnea which complicates my picture and affects my breathing at night. I have a lot of bad dreams, and sometimes act out my dreams. I have a stomach emptying disorder called gastroparesis that stalls digestion. I also have issues where my eyelids twitch, especially if I sneeze, squeeze them tight, or touch them as if to apply makeup.

My mental/cognitive issues also persistent on a daily basis: word finding issues, unable to organize my thoughts and say what I am trying to say during conversations-it almost comes out as a very deliberate rate of speech. I can't remember what I was going to do last, forgetting conversations I had, or to pick my kids up from " X" location on "X" day. I have forgotten important dates that have meaning to me (anniversary, date of best friend death). Poor spelling/grammar (I have always been a perfect speller- for the life of me I can't remember how to spell common/every day words.) I stutter and sputter from time to time, say words out of order, and sometimes don't even understand what I am reading. I temporarily forget who people are, forget faces and names of new people I have met, and at my job have forgotten clinical terminology. There are times I get disoriented and don't know where I am for a split second. I am so spaced out. My husband or kids will be talking to me and it's like I'm not even processing that they are speaking to me and that I need to respond.
I had a neuropsychological evaluation, explained in great detail all of these symptoms, but the results identified some mild issues with visuospatial and executive functioning, but they did not see any sign of a neurodegenerative process (that's good right?), and attributed this to sleep apnea and depression. I also had numerous labs to rule out B12 Deficiency, Thyroid, etc. I have no history of head trauma.
Am I way off in left field posting here? I am frustrated and frankly getting tired of getting no answers and basically being told this is depression.
 

sunkacola

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Well, you have a lot going on there. It's hard to say if you have FM or not, but it is a possibility. Have they tested you for MS? Have you had neuro-cognitive testing?
I doubt very much that all this is caused by depression, although that is something that many doctors will tell you. I advise you to find a doctor who is familiar with FM and see what he thinks. someone who won't tell you it's all in your head. The thing is you have to be tested seriously by a doctor who believes you, and rule out all the other (mostly worse) things that it could be, before you can be sure it is FM. Best of luck to you!
 

JayCS

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I agree with sunkacola. I'd think there may be fibro in there, but wouldn't be satisfied with that alone, because your symptoms seem so far-reaching. For the bodily issues I'd try osteopathy. Would you call your eyes, mouth & throat (& more) *dry* by any chance? ("sicca")
 

Nana anna

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Chestertwpmom, I hope you found some answers. Please, if you see this post, would you give an update on how you are doing. Would love to hear from you. Thanks!
 
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