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?

I wish I could edit because I forgot to add that STRESS definitely brings on or makes weakness worse, as does the wearing of layers of clothing.

I’m sorry you are feeling so bad. Although I’ve been here for awhile, my MG is mild and I tested positive for achr antibodies.

Flares can be common, and heat can exacerbate MG. Your profile doesn’t state where you live, but my guess is that if you live in the US you are probably in Florida. Stay in A/C as much as possible.

You can still have MG and test negative for the tests you have taken. If you do get Mestinon to try, make sure that you don’t take it if you have further blood work. It could mess up the results.

This was a more active group, but one member hasn’t been here for awhile. She was a nurse. If you can look up threads by person, check out posts from AnnieB.

Good luck in figuring this out, it can take a long time and many doctors. Jim

Sorry, search Annie. She has had a few letters or numbers after her name. Jim

Thanks again, Jim. I've gone through a number of posts and did notice Annie and that it seems she's been gone. Hopefully she's ok.

I actually used to live in FL but now live in the hottest part of CO : . IF the weakness I've had since the early 2000s is MG, then I must have gone into some sort of remission as I didn't have flares in FL but did still have the weakness in the hands and wrists, and some in the ankles. It wasn't as bad as now but I still lost the ability to bowl and certain other sports that I was pretty good at. Things blew up again in late 2014/early 2015, and this was following a stressful time in my life (illness, caring for and loss of my mother). It began with aching arms and/or legs and progressed to more weakness in those areas or severe flares of such. Now I also have aching forearms and lower legs in the summer as well, along with the increased weakness in those areas.

Now I'm a little excited amd wired because I read the thread about caffeine, and I tried it. I took 2 black teabags in a cup and steeped them and then drank it all. I then proceeded to mop my floors with no issues other than mid-back ache which I know is from being out of shape and my spine issues. I then just almost finished vacuuming my couch which normally means I have to rest awhile after just a section, and again had none of the usual issues except the back is acting up. Normally the muscles in the back to the sides get terribly weak, and they didn't, and my wrists and hands were ok also but wrists did begin to weaken as it had been awhile since the tea. I just drank another cup of the same and am taking a time out to let it get in my system and then I'm going to finish. I'm not good with caffeine as it makes me crash but I'm so excited right now that just maybe I can do normal things even if temporarily and have some solution - even if no dx. I've been very scared bc I support myself and I have to work, but I'm lucky to work remotely from home so I can take breaks as I need to (which is frequently in the summer and so my work does suffer which causes more stress and more weakness). This has already been a long haul for me and humiliating as nobody understands and of course you don't look sick. Just maybe I'm close to an answer. I truly hope my PCP lets me try Mestinon.

Thank you again for listening and sorry for the rambling, but this has been ridiculous and I'm at least a tad hopeful now about getting some sort of answer and having something to at least help me if not.

Yes, caffeine works a little like mestinon. I have a cup of coffee in the morning and I used to drink Coke/Pepsi in the afternoon.

Remission is possible, I’ve had one for about a year, but I believe work stress ended that. Many people with MG go into remission after a thymectomy. A good neurologist will prescribe a CT scan to look at the thymus gland.

If you get mestinon take it as directed. If some is good, then lots is better does not work. Too much can cause problems too.

BTW, there was a book out called something like You Don’t Look Sick. It was several stories from people that had diseases similar to MG. I think of of the stories was from a person who had MG. Jim

I can relate to the "not looking sick" component. I was always athletic so I think I was judged on my build and to some degree, my outgoing personality. It doesn't hurt to try a different physician without disclosing it to your PCP. I feel there are few good ones compared to bad. Keep trying and supports such as these are good for support.