Micheline
Active member
- Joined
- Sep 23, 2008
- Messages
- 81
- Reason
- PALS
- Diagnosis
- 11/2008
- Country
- CA
- State
- British Columbia
- City
- Campbell River
Hello,
I’m new here and had my last EMG and Muscle Biopsy with my 2nd Neuromuscular Neurologist appointment on Monday.
A bit of history first; Married with 2 teenagers.
- Nov.2007, I was having trouble going upstairs, getting up from a sitting position, and getting out of bed.
- tripping over my feet, my gait was changing, walking was slower.
- was sent to emergency, for x-rays and ct. Both came back normal. Dr. on duty asked me to stand on one leg and bend it (fell like a ton of bricks). Referred to Neurologist.
- December, EMG, NCV…showed changes in both another one book for January, 2008.
- In-between appointments; blood work- everything imaginable. Now walking with a cane.
- January EMG & NCV…noticeable changes from month previous. Appointments for LP, MRI’s, and CAT scan. More blood work. Fell and sprained my ankle twice – walking with crutches. Walking up steps almost impossible without help.
- Febuary, I had to leave work unable to fly due to limited walking. CAT scans, MRI, and LP (normal)
- March, Incontinence, started using walker & wheelchair, unable to drive, unable to walk up and down stairs(now have to go down on my butt), When I fall I have to crawl to the lowest chair in the house, unable to get up without help.
- June, EMG & NCV still getting worse. Unable to walk long distance without fatigue and weakness(take 5-7 steps have to rest, and unable to lift legs towards chest they feel like cement) Informed GP of Incontinence (make schedule trips to washroom…ha ha). No reflexes from my knees down. Saw Neurologist, possible GBS-CDIP but unsure. Asked if I could get second opinion. Referred to Neuromuscular Neurologist.
- August, sent to Neuromuscular Neurologist, EMG, NCV, no response from knees to ankles even on max. EMG still getting worse, now showing weakness in my back, some weakness in my neck and shoulders. Muscle fasting in my thighs. She referred to her colleague for another EMG and muscle biopsy. Did treatment of IVIG, 50/50 chance of working, Neurologist is doubtful “but why not try”!
- Monday September 22 ruled out GBS-CDIP, asked what it could be…I quote “maybe a variant of Lou Gehrig’s” biopsy will take two weeks, MRI on October 31st. Maybe doing another LP.
As of to date; I need help getting off the toilet, muscle twitching in legs, abdomen, once in awhile in my arms. Pins and needles if I stand to long or sit to long. For the last couple of weeks I have had cramps in my thumbs. My husband and I have asked about everything when we go see the doctors. And have looked up everything they tell us. He has been my rock.
I am not sure where we go from here. If it comes up that I don’t have this, I don’t know what else it could be. Any responses, ideas, questions would be grateful.
I’m new here and had my last EMG and Muscle Biopsy with my 2nd Neuromuscular Neurologist appointment on Monday.
A bit of history first; Married with 2 teenagers.
- Nov.2007, I was having trouble going upstairs, getting up from a sitting position, and getting out of bed.
- tripping over my feet, my gait was changing, walking was slower.
- was sent to emergency, for x-rays and ct. Both came back normal. Dr. on duty asked me to stand on one leg and bend it (fell like a ton of bricks). Referred to Neurologist.
- December, EMG, NCV…showed changes in both another one book for January, 2008.
- In-between appointments; blood work- everything imaginable. Now walking with a cane.
- January EMG & NCV…noticeable changes from month previous. Appointments for LP, MRI’s, and CAT scan. More blood work. Fell and sprained my ankle twice – walking with crutches. Walking up steps almost impossible without help.
- Febuary, I had to leave work unable to fly due to limited walking. CAT scans, MRI, and LP (normal)
- March, Incontinence, started using walker & wheelchair, unable to drive, unable to walk up and down stairs(now have to go down on my butt), When I fall I have to crawl to the lowest chair in the house, unable to get up without help.
- June, EMG & NCV still getting worse. Unable to walk long distance without fatigue and weakness(take 5-7 steps have to rest, and unable to lift legs towards chest they feel like cement) Informed GP of Incontinence (make schedule trips to washroom…ha ha). No reflexes from my knees down. Saw Neurologist, possible GBS-CDIP but unsure. Asked if I could get second opinion. Referred to Neuromuscular Neurologist.
- August, sent to Neuromuscular Neurologist, EMG, NCV, no response from knees to ankles even on max. EMG still getting worse, now showing weakness in my back, some weakness in my neck and shoulders. Muscle fasting in my thighs. She referred to her colleague for another EMG and muscle biopsy. Did treatment of IVIG, 50/50 chance of working, Neurologist is doubtful “but why not try”!
- Monday September 22 ruled out GBS-CDIP, asked what it could be…I quote “maybe a variant of Lou Gehrig’s” biopsy will take two weeks, MRI on October 31st. Maybe doing another LP.
As of to date; I need help getting off the toilet, muscle twitching in legs, abdomen, once in awhile in my arms. Pins and needles if I stand to long or sit to long. For the last couple of weeks I have had cramps in my thumbs. My husband and I have asked about everything when we go see the doctors. And have looked up everything they tell us. He has been my rock.
I am not sure where we go from here. If it comes up that I don’t have this, I don’t know what else it could be. Any responses, ideas, questions would be grateful.