Status
Not open for further replies.

Trevor

Active member
Joined
May 19, 2009
Messages
52
Country
CA
State
Ontario
City
Cambridge
I've posted before and got positive feedback from some kind hearted people. I'm again asking for some help to things going on with my body. Last year I was on prednisone for 8 months because my gastro spec didn't know what to do as I have ulcerative colitis and I was bleeding a bit and she did other ct scans and determines prednisone was the answer. In July 2008 while I was on prednisone I started to see and feel twitches in my calf. I had an EMG done and came back normal and the neuro didn't know why I was getting twitches. My GP px Clozepam(which I'm still taking to this day) . big side on prednisone is weight gain which I actually lost weight. In March 2009 I started having lots of stomach pain and started to bleed a lot. Also my mouth have been dry and still is and I get this film on the inside of my lips every morning. To continue they wanted to try this new drug called Remicade to help my colitis. Before they did that I asked to do some test because my thumb and fingers were always sore and my neck was stiff and I wasexperiencing head pressure which I have for 4 years. They did a MRI in the hospital and it came back clear. They injected me with remicade and my head and hands got worse. This was May 22, 2009. My legs have always continued to twitch but my hands seemed to get worse and sore. The remicade did nothing for me and I went to see a Naturapath who helped me with my bowells to the point now I on go 2-3 per week nd experience pain when I go. I have extreme amount of gas which my family call me stinky. My symptoms with twitching started to spread to other areas mainly my left tricep. If I was leaning on something it felt like blood was rushing to that area and it started to twitch and was very uncomfortable. My throat which for a couple of months has been sore but I dealt with it started to get worse, felt like a lump in my lower adams apple. Went to my GP requiring my throat also I've lost muscle tone in my arms as they are skinny looking and feel like the muscles are burning everyday as soon as I wake up and my legs feel like I carrying two boulders attached to them. The GP is ordering an xray on my throat and I'm going to the neuo July 13 for another EMG. I'm very tired and my son who I love with all my heart can see I'm not well and constantly ask me how I feel today and I lie and say not bad bud.My wife is strong and continues top tell me think positive but each day I wake up the burning starts and I feel weak in my arms and legs. When I try to do thing my mouth gets dryer and my muscles ache more.I know this is long winded but I wanted to include as much as possible for some feed back. I know a lot of you have ALS on this form and my prayers go out to you. Could you please share some thoughts if this could be ALS which I think it is or am I out of my mind. This form is very informative and I respect everyone's opion. Please help answer some of my concerns.
God bless
 

Trevor

Active member
Joined
May 19, 2009
Messages
52
Country
CA
State
Ontario
City
Cambridge
Does anyone have any thoughts about my situation. My body is weak and I can walk but I seem to be getting worse each day. My stomach keeps on growling and I have lots of gas
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Stomach problems have nothing to do with ALS. I'll get back to you on the other stuff.

AL.
 

Trevor

Active member
Joined
May 19, 2009
Messages
52
Country
CA
State
Ontario
City
Cambridge
thanks for your response. I have a history of colitis but right now my arms burn and twitch. My throat is getting worse and overall I'm depressed. I don't know where to turn for some answers.
 

ComfyTummy

New member
Joined
Jun 27, 2009
Messages
1
Reason
Other
Country
US
State
NY
City
NYC
Have you tried the Specific Carbohydrate Diet for you colitis? I was diagnosed with severe UC back in 2004 and put on meds by my doctor. After months of research, I came across a book by Elaine Gottschall called "Breaking The Vicious Cycle" which explains why the SCD works to heal colitis, crohn's, and other digestive diseases. Within months of being on the diet, I was symptom free and med free. Have been ever since. Definitely worth trying. You can read more about the diet and my journey on it on my blog at www.comfytummy.com All the best to you.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I sure am glad I don't have these problem - the recipes don't look very exciting.
 

GlenBrittle

Very helpful member
Joined
Oct 9, 2008
Messages
1,530
Reason
PALS
Diagnosis
10/2008
Country
CA
State
Ontario
City
Alexandria
did you see that list on 'not allowed"s ... good grief I would starve.

Yep , I am glad I dont have that . Now if I could only make this pesky ALS go away ...
 
Status
Not open for further replies.
Top