I know there are a million threads on here the same...does this sound like ALS? etc. so I'm sorry in advance for this post. I've been lurking around here for ages trying to pluck up courage to post this.

My mum is in her 50's, & about 6 months ago starting getting a really stiff right hand with a weakness up her arm, she's a hairdresser & it got so bad she had to stop hairdressing. She now can't open clothes pegs to hang out the washing or turn the key in the car ignition. She went for loads tests, x-rays & they put it down to wear & tear on her back.

However she since gone for an MRI scan & saw a neurologist. There was something on the MRI but we don't know what. She has severe upper body muscle waste. She had more tests where they put needles deep into the muscles & they came back abnormal. He said the muscle degeneration was spreading to her left side, lumbar region & legs. He also said her cervical spinal region, nervous system or something was degenerating & not repairing itself.

She's got an appointment with the head neurologist on the 9th june, which is a month since her last app. The diagnostic man said he knew what it was but he wasn't putting a name to it til she saw the head neurologist. What do u think?
I'm really at my wits end, I can't sleep, I'm so worried about her.
Any replies would be greatly appreciated. Thanks for listening.

please check into lyme disease. very controversial but also very likely cause of als.

jon

It's fine, you must get fed up with everyone asking every day, I can understand why nobody replied.
So it is ALS, her doctor telephoned yesterday to tell her.

Thanks anyway.

Thanks for your reply John, yes, you're right, the whole family have just been kinda hanging about in limbo, not really knowing what to do or how to feel.

I've had periods of utter despair where I've spent the day crying but felts moments of hope too. It is tough. I'll go to that link you posted, thanks.

Was the DX for yourself? You sound quite upbeat & positive? Must be tough for you.

Shoe x

Hi Shoegal,

Yes the diagnosis was for me. I think I spent the first 2 weeks crying with my family. Probably it's the best thing to do. Just let the feelings come and let them out. Believe me, the worst will pass and a semblance of normal life will return. Also I had periods of denial and they are to be enjoyed as well. There is a lot of exciting research going on now and there is realistic hope for a therapy to slow down or arrest progression within the next 5 years. My take on it anyway.

John

sorry to hear what all youve been going thru. your moms symptoms seem to be similar to my husbands. his started with right hand weakness, then fasicullations, and now spreading into his left arm/hand. the nerve conduction studies showed c and t spine involvement and they thought some lumbar involvement. that was back in december i think.
it's very hard to deal with, especially the uncertainty. tim is fairly young to get this disease, 38, and we have three small children so this makes it very difficult to deal with. we don't want to think ahead, but yet with the kids, we have to.