Seeking Answers

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A2020Whammy

New member
Joined
Jul 30, 2020
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1
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Kensington
Hello,

Much like everyone else that has frequented this particular thread, I've had some symptoms that I googled and sent myself into a tizzy. I've had body wide fasciculations since around December 2017. Before that I have been told I complained about twitching intermittently with the most persistent being eyes over at least a decade. Never gave them much thought until I hit some sort of midlife crisis where I focused on some health issues I was having and googled myself to the point of OMG I'm dying. Then the twitching took off, like everyone else prone to hypochondria Dr.Google told me I must have MND. Logic went out the window. I went to my doctor who did a brief clinical exam on me, sent me for an MRI of my neck and thoracic spine and brain. The imaging came back with stenosis and herniations in my neck, with C4-C7 all being effected in some form or fashion. Much more than that I've not had done because I don't have the greatest health coverage so it gets so expensive.


Because I had had previous imaging on my lumbar he opted not to do that at that time due to my insurance concerns (nothing of significance on that imaging). PCP (former neurology nurse practitioner) stated that he didn't think it was of any consequence, but probably just suffering from BFS. That wasn't good enough for my hypchondria addled brain so I spent 1.5 years questioning it and finally got my act together and rolled with it. FF to about 3 months ago and I suddenly start getting toothache pain from about the top of my left hip, through my foot and the twitching in that leg flares back up. My hamstrings feel crampy as does the outer side of my leg. Then suddenly one night I straighten out my knee and my knee says OMGNO. I also ache across my hips if I lay on my left side and sitting too long makes my leg ache. Over doing it and I'm in pain for the rest of the day.

And lately I swear I hear my foot slapping at times when I walk, yet I can heel and toe walk (hurts the hell out of my knee but is doeable). If I make a conscious effort to walk properly I can control my foot touching the ground, but when I'm just walking the pain makes my foot go "oh no hot potato get on the other leg".

And lately my twitching has flared up. All over. I'm not sure if the twitching has flared up because of the nerves or because of my anxiety coming back up. Or a combination of the two. But it's a mind melter with it compounding on top of the pain.

I've already consulted my pcp who says it sounds more like a pinched nerve, especially with the achiness from hip to foot and the slight burning quality. I point blank asked him if this sounded like any form of neuron disease and he laughed and said if anything it could be radiculopathy or neuropathy (I am a newly diagnosed diabetic and have had IDK how long uncontrolled glucose levels).

I've read the stickies but then there are stories, anecdotal or not, where people say there is pain at times and years worth of twitching before getting a diagnosis, and my mind keeps going back to those stories.

But in this case being painful works to my benefit right now right? I'm not sure why I'm writing here, but given how long the wait is for imaging right now due to COVID, I'm waiting more MRI's and while I wait, my mind is running amok. I am revisiting dark thoughts I don't care to revisit but cannot stop. think I'm just seeking some form of reassurance from people that have experience with this. Is this most likely something OTHER than MND?

I don't intend to respond unless asked a direct question, as I know that's a cycle that happens a lot and doesn't quell the anxiety any, but rather feeds it. This will be my one and done, only because I think I have no outlet and needed to get this worry out and some feedback. So I'll thank anyone in advance if they can just possibly give reassurance that this is not pointing towards ALS.... is it???
 
Yes pain points away from mnd

Yes correct. this does not sound at all like mnd.

no it is not pointing to ALS rather it points distinctly away.

believe your pcp. Follow his advice. Good luck
 
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