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Old 01-06-2020, 08:14 PM
Snoozebutton Snoozebutton is offline
Junior Member
 
Join Date: Dec 2019
Posts: 8
3 yr Member
Snoozebutton Snoozebutton is offline
Junior Member
 
Join Date: Dec 2019
Posts: 8
3 yr Member
Unhappy Please let me know what you think about my symptoms ?

Good evening . It seems that this board isn't as busy as it was in times past, but I'll give this a try anyway. I will list my symptoms and I'm seeking any input. My tests just came back as negative (Achr panel & MUSK). The Achr blocking was a 15 though, and the lab messed up and ran it twice and the first time it was 14. Still too low for a dx and I'm desperate for a diagnosis (accurate one of course) because once the temps rise in mid-April I get a weeks-long horrible weakness FLARE (are flares common?) and once that subsides, well it's still literal hell for me until late September.

Here is what I have going on:

1) Muscle fatiguability - (BILATERAL - all) mostly my arms, wrists, hands, fingers, and now shoulders when I have to hold my arms up. Also the back muscles along my sides. Sometimes my ankles (can collapse going down steps) and I have had leg weakness flares in the past. It's getting worse now., such as I can hardly get through mopping my floors, or vacuuming the couch. Hand washing dishes kills me also. My arms are tired right now from having to hold them up to type on this iPad.

I do recall also getting tired of chewing, although not lately.

2) Heat makes everything far worse and also causes extreme general fatigue (tired/sleepy). Sometimes I can't type well because of it and I work on the computer all day. I seriously am in hell from mid-April through the end of September when the temps drop here to the low 80s - it's then like night and day but I am still left with muscle fatigabiilty upon exertion. It's just not quite as bad and I have way more energy/am not sleepy anymore.

3) During the summer I also find myself waking up with "trigger finger" where my my middle fingers are cramped up/stuck.

4) When I have to grip something for any time my hand will get "stuck" like that.

5) Dropping things constantly especially in the warmer months.

6) I sometimes get what seems like (horrid) spasms/pain in my hip or hips and my low back. Now wonder if this is related to weakness.

7) In the summer especially, sitting makes my legs tired/feel weak and "funny", which is weird. When the temps drop, it goes away. So when I get up from my chair when working, I'm hunched over a bit. It's actually back a little now, but not as bad.

8) I got a weighted blanket which I love, but I don't think it's good because my wrists, arms and ankles seem fatigued/weak when I wake up. Ugh.

If not MG what else could this be and any input and advice is welcome. I'm going to ask my PCP to allow me to try Mestinon, and tonight I'm planning to mop the floors and then try caffeine to see if it does anything. I gave up looking into this and the docs for 3 years but now I'm getting worse so I'm back at it. I actually have a history of hand/wrist/ankle/bouts of leg weakness spanning back 20 years. I thought it was from a neck herniation I'd had but a neurologist did an EMG in 2016 and he said "It's not your neck" and I was shocked.

Thank you I really could use some input this is lonely because of course nobody understands and my niece even implied that it might be in my head. Well if it's in my head then why does it improve when the temps drop?
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