Experiencing more problems

[Trevor]

I had an EMG July 13 at a neuro office where his assistance does all the emg's and he then gives report to neuro. I wasn't in there that long but the neuro said everything was normal. This was my 3 emg, the 2 emg was done by a neuro and he could see fasculations in my calf but at that time I only had twitching in my legs. now each morning my head and neck have tremors. When I stretch my arms they my muscles shake as they are weak and skinny. I have twitching all over my body, including my butt and belly. I don't have any twitching in my tongue or face. I have this pressure feeling in my spine and it is sore. Each morning I wake up and my arms and back are on fire. I take a cloazepam and that gives me a little relief. But in the morning my head , neck, burning feeling and fingers(sore) are terrible as I hate waking up (My body wakes me up usually at 6:45am with all those symptoms. Throughout the day I'm tired and sore and it only gets worse each day. I have another appt with the neuro but not until November. I have an appt with a Reumantoid Arthritis spec in Sept but it is more my nerves then joints even though they hurt also. I'm listening to mediatation tapes and trying to relieve as much pain and burning/twitching as possible but it is so hard. I thought okay the emg was okay but everything is getting worse, The neuro said he could refer me to a pain clinic and said I don't have mnd even though I lost muscle in my arms and legs and my body has tremors every morning. I feel the best laying down doing nothing which is not how I want to lead my life. I can't wait until Nov just to see the neuro as things are progressing for the worse for me.Does anyone have any ideas whhere I should go from here, I live in the Kitchener, Ont area and there isn't any ALSspec in this area and I know there is one in Hamilton but can you just call them and arrange an appt or does everything have to go through your GP. I received a lot of information from this form before and I'm back looking for some help. Reported before I have colitis and was flared up but that is under control and the only medication I'm taking since DEC 15, 2008 is clozenapam which I've been on for over a year, I'm seeing a Natural Path and she is trying different Homepathic med but nothing is working. Please provide anything you might have. Plus in Ontario they are running those very scary TV ALS ads showing a guy(music in the background Head, Shouders, Knees and toes) body cripple. Well my head /neck, shoulders, knees are sore and weak and I turn the channel if that ad comes on)

 

[GlenBrittle]

The ALS Clinic
McMaster University Medical Centre
Hamilton Health Sciences
1200 Main Street West Room 4U7
Box 2000
Hamilton, ON L8N 3Z5
Tel: 905 521-2100 x76870
FAX: 905 521-2656

Call them. The worst they can say is that you must be referred.

Glen

 

[Trevor]

Thanks Glen. Did you experience some of the stuff i'm going through. The burning arms, back and shoulder.

 

[GlenBrittle]

Im sorry but no. No burning.

Except for that one bonfire party we had where "I FELL ASLEEP" {{thats my story and Im sticking to it}} and my mocassins started to burn. its gets cold at 3am ya know.

I really do not think its ALS. Best to get a proper diagnosis from a specialist. I do not think you need anymore EMG's . Of course, its my opinion.

Glen

 

[Trevor]

Thanks Glen.

 

[ktmj]

Sorry for all you are going through. Keep in mind that there are a lot of treatable neuropathies that your symptoms describe, among other things. I obviously cannot diagnose you but the specialists can. Keep pushing with them.

The burning and pain point away from ALS based on most of the facts and personal experiences I know about.

Best wishes.