Hello

[WendyWooG]

Hi everyone I hope I have started this in the correct place.

I am 48, mum of two grown up daughters and have a 3 year old granddaughter.

In Feb 2015 people were asking me why I was limping, I hadn't noticed, had no pain just couldn't go on tiptoe on right leg. I also was getting a bit breathless. I was bounced around various hospital depts has MRI brain, spine C.T blood tests etc. The only thing wrong was elevated CK levels. In the end I was sent for an EMG by my rheumatologist. I have sjogrens and fibromyalgia.

By the time I got the EMG July 2015 I was having problems with my left arm dropping things etc and considerable muscle cramp in my right leg, left arm and rib area. I was also getting very breathless just going up and down stairs. I went in for EMG on right leg but the doctor decided to test legs arms and throat. I got a letter telling me I was being referred urgently to a neurologist. I went to my GP to ask why and was told the EMG had come back with chronic denervation in all areas but worse in right leg and left arm and that AHCD was very likely the cause.

I saw the neurologist in September and was told based on all the tests and EMG it was motor neurone disease and he immediately started me on riluzole. However he said that it was atypical and wanted a second opinion. By this time I had visible atrophy in right leg and left arm and shoulder, and had started to twitch.

My second opinion was in December and was the same, however it was atypical because I had purely lower motor neurone symptoms, so it may be PMA They have mentioned there is a possibility it might also possibly be MMN and I am waiting now for a more extensive EMG lumber puncture and Ivig treatment trial.

I am going a bit crazy with the the wait at the moment, and am getting worse all the time. I can't really walk very far now and need a wheel chair for trips out.

Sorry for the long post

Wendy

 

[lgelb]

Hi, Wendy, and welcome. You're in the right place and there are few "too long" posts here so long as they're in paragraphs as yours is.

We'll hope for now for an MMN diagnosis for you. Meanwhile, feel free to browse the stickys, use the Search link and ask any questions about gadgets, equipment, whatever occurs to you.

Best,
Laurie

 

[Nuts]

Hi Wendy, and welcome to our little world. Your post is fine--as Laurie said, folks that write in one long sentence with no punctuation and no paragraphing are hard to read, but yours is fine! I'm sorry you find yourself here, but under the circumstances it's the best place for you. This is a wonderful and very supportive group of people.
Becky

 

[WendyWooG]

Thanks Laurie

I have had a bit of a lurk on here and found some other posts with people who seem to have a similar process through this. I have also had a good look at the stickys, it's all very helpful. Thank you.

Wendy

 

[Nikki J]

Hi Wendy. Sorry to welcome you. Of course wish you luck with IVIG. We seem to be having a special on it- several members will be trying it. Look forward to hearing more from you!

 

[WendyWooG]

Hi Becky and Nikki

Thank you for the welcome xx

 

[affected]

Welcome Wendy, I sincerely hope the IVIG points you to a condition that can be treated. Please keep us posted.

 

[Ells]

Hi Wendy,

Welcome here. Are you any closer to getting a date for the IvIG?

Take care,
Ells.

 

[WendyWooG]

Hi Ells

Not yet, I am jumping every time the post arrives, it's driving me batty. I got a copy of a letter from Professor Ginsberg and he was chasing the admission so at least I know someone is progressing it. Trying very hard to be patient, I don't know if I should ring them up but don't want to be a pest when the prof has already chased it.

Wendy