ALS Support Community

Hi Kiki, thanks for your reply. What symptoms do you have, are any of them autoimmune?

I do get occasional cramps in my feet and legs, but so far my speech and swallow are ok. Sometimes swallowing is more difficult. I sometimes get esophageal spasms which are painful and jaw jerks/spasms. I haven't got Myasthenia gravis or MS, and haven't had a spinal tab yet.

Kind regards,
WM

Hi again, so there is still hope that a spinal tap will show sth else.
Unfortunately I already had a spinal tap, blodwork etc.so hope is limited. I have daily cramps in uncommon muscles and swallowing issues, CFS. It's hard to be in limbo for so long. Hope that you find a treatable cause.
Kind regards,
Kiki

Thank you, Emg tests on 29th March. I loads of thick throat mucus and runny nose after eating and exercise, plus some breathing issues when tired. It scares me how this will end up when things progress. Am sure it's ALS/MND. Do you have these as well?
Kind regards,
WM

Fingers crossed for the 29th!!Hope they test all the muscles that atrophy or cause your ptoplems.
I rather have breathing issues when talking or walking and the mucus or the weird feeling of sth stuck in my throat is there as well as regurigation of liquids and sometimes aspiration. Maybe you could get a pulsoximeter and perhaps see a lung doctor as well to check your lung function?
Best wishes Kiki

Thanks, I'm having a spirometry test next Monday which does this. Have you had EMG testing, what did it show?
Kind regards,
WM

Sounds like you are on the right track, keep us informed here. I had an emg one month after my symptoms began though only in arms and legs and not in the bulbar area. I will see an ENT but have to wait 3 months here for an appointment also I will try to get an emg in the bulbar area. It's super hard to wait. My swallowing got progressive worse over the last 4 months.
Best wishes
Kiki

It is very hard to wait, anxious and depressing. Sorry to hear about your swallowing getting worse. How is your speech? My other hip has now started to atrophy, it's going the same way as my hip replacement did. They're sore sitting down like skin on bone. I can still walk though.
Kind regards
Lesley

Hi Lesly, I was thinking of you and wondering how your appointment was? I'm sorry that both of your hips atrophy. My swallowing also gets worse. My speech is ok only s is slurred sometimes.
Best wishes,
Kiki

Hi Kiki, my EMG tests are tomorrow. Sorry to hear that your swallowing is getting worse. Did you have EMG tests done? I have to go back on Thurs to get the results. They are going to test my atrophied hip. will let you know results.

Kind regards,
Lesley

Hi Lesley, how was the lung function test as I thought that test has already been done ? My next neuro appointment is in june and also I'll see an ENT in June. There is quite a long waiting time here due to Covid. Fingers crossed for your Emg test!!
Best wishes,
Kiki

Hi Kiki, my emg was negative, but that doesn't mean much. I still have nerve to muscle function, but my hip replacement which initially healed has atrophied. An MRI confirmed this and the surgeon hasn't seen that pattern before. I've got autonomic dysfunction also, which can go with als/mnd. My lung test was fine. You have a long wait.

Lesley