CBowman
Active member
- Joined
- Jan 23, 2007
- Messages
- 57
- Reason
- Learn about ALS
- Country
- US
- State
- Florida
- City
- Tampa
Hello everyone, I am 34 years old and would like input for anyone that may help.:mrgreen:
It has been as scary 4 months. The disease started in October of 2006 with very tight calf muscles. I thought that I had strained them in the gym, but weeks later my left foot dropped. I went to see an orthopedic doctor and he told me I had foot drop, basically gave me a brace and told me to wear it for a month then he would do a EMG test. A week after I received the brace, I noticed my hamstring muscle on my left leg was also getting weaker. I called the doctor and moved up the EMG test from 12/7/06 to 12/1/06. When the doctor performed the test the results were abnormal in my left calf/leg and in my right leg. He ordered brain and spine MRIs. The MRIs came back normal. The orthopedic doctor was stumped and sent me to a Neurologist.
I was able to see a Neurologist rather quickly (I begged the receptionist). He performed a physical test and gave me the bad news either MMN or ALS. After he performed another EMG, he stated that he thought it was MMN in lieu of ALS but wanted me to get a second opinion. The second opinion came back more likely ALS than MMN (he also did a physical test and EMG and Nerve conduction test but had different results from the first and second doctor), but he started me on IVIG on 12/18/06.
By this time (12/18/06) my left leg was in bad shape (foot drop, calf starting to shrink, hamstring giving out especially going up steps) and my right leg was starting to get bad (calf muscle weak, foot and hamstring starting to weaken). Not to mention the muscle twitching was all over my body (legs, arms, back, chest, shoulders, etc.)
The first round of IVIG didn’t seem to do anything (with the exception that the weakness has not spread), but I convinced my doctor to do another round of IVIG and start physical therapy. I started physical therapy on 1/1/07 and my second round of IVIG started on 1/7/07.
My doctors appointment on 1/16/06 (he gave me a physical test to monitor progress) and he noted that my right leg has improved and said that this is a good sign of it not being ALS (because ALS does not get better) but will not rule out ALS until more time passes. I have not had any other weakness since starting IVIG but my left leg does not seem to be getting better. My physical therapist stated that from 1/1/07 to 1/14/07 I have a ¼ muscle grade improvement on the left leg and a full muscle grade improvement on my right leg, but I cannot walk more than 20 yards without stopping due to fatigue in the left leg. Another thing I have noticed on a positive side is the muscle twitching has lessened.
I saw my doctor again on 1/22/07 due to the fact that my left side has continued to get worse (my hamstring and quad muscle are weakening even more). Now in order for me to walk I have to keep my knee on my left side locked. My doctor is ordering me a wheel chair and says the speed of this is unlike ALS but I do have a brisk knee reflex which is like ALS. My right leg is still pretty normal with a little weakness in the foot/calf area (1 degree weakness). He is sending me to the Mayo clinic soon. I am awaiting a telephone call today.
In addition, last night and every now and then when I wake up my right foot feels sore or numb. Does this mean anything?
I have been reading a lot of entries, you guys/gals:| have given some good advice.
Please give me some advice on what this disease might be?
For some reason he is ruling out everything except for ALS and Multifocal Motor Nueropathy (MMN).
Oh, I forgot to mention I also have (AS) Ankylosing Spondylitis. AS is a arthitis condition that wants to fuse the back, I have had this condition since I was 18. The doctors don't think this has anything to do with my current condition.
Thanks
It has been as scary 4 months. The disease started in October of 2006 with very tight calf muscles. I thought that I had strained them in the gym, but weeks later my left foot dropped. I went to see an orthopedic doctor and he told me I had foot drop, basically gave me a brace and told me to wear it for a month then he would do a EMG test. A week after I received the brace, I noticed my hamstring muscle on my left leg was also getting weaker. I called the doctor and moved up the EMG test from 12/7/06 to 12/1/06. When the doctor performed the test the results were abnormal in my left calf/leg and in my right leg. He ordered brain and spine MRIs. The MRIs came back normal. The orthopedic doctor was stumped and sent me to a Neurologist.
I was able to see a Neurologist rather quickly (I begged the receptionist). He performed a physical test and gave me the bad news either MMN or ALS. After he performed another EMG, he stated that he thought it was MMN in lieu of ALS but wanted me to get a second opinion. The second opinion came back more likely ALS than MMN (he also did a physical test and EMG and Nerve conduction test but had different results from the first and second doctor), but he started me on IVIG on 12/18/06.
By this time (12/18/06) my left leg was in bad shape (foot drop, calf starting to shrink, hamstring giving out especially going up steps) and my right leg was starting to get bad (calf muscle weak, foot and hamstring starting to weaken). Not to mention the muscle twitching was all over my body (legs, arms, back, chest, shoulders, etc.)
The first round of IVIG didn’t seem to do anything (with the exception that the weakness has not spread), but I convinced my doctor to do another round of IVIG and start physical therapy. I started physical therapy on 1/1/07 and my second round of IVIG started on 1/7/07.
My doctors appointment on 1/16/06 (he gave me a physical test to monitor progress) and he noted that my right leg has improved and said that this is a good sign of it not being ALS (because ALS does not get better) but will not rule out ALS until more time passes. I have not had any other weakness since starting IVIG but my left leg does not seem to be getting better. My physical therapist stated that from 1/1/07 to 1/14/07 I have a ¼ muscle grade improvement on the left leg and a full muscle grade improvement on my right leg, but I cannot walk more than 20 yards without stopping due to fatigue in the left leg. Another thing I have noticed on a positive side is the muscle twitching has lessened.
I saw my doctor again on 1/22/07 due to the fact that my left side has continued to get worse (my hamstring and quad muscle are weakening even more). Now in order for me to walk I have to keep my knee on my left side locked. My doctor is ordering me a wheel chair and says the speed of this is unlike ALS but I do have a brisk knee reflex which is like ALS. My right leg is still pretty normal with a little weakness in the foot/calf area (1 degree weakness). He is sending me to the Mayo clinic soon. I am awaiting a telephone call today.
In addition, last night and every now and then when I wake up my right foot feels sore or numb. Does this mean anything?
I have been reading a lot of entries, you guys/gals:| have given some good advice.
Please give me some advice on what this disease might be?
For some reason he is ruling out everything except for ALS and Multifocal Motor Nueropathy (MMN).
Oh, I forgot to mention I also have (AS) Ankylosing Spondylitis. AS is a arthitis condition that wants to fuse the back, I have had this condition since I was 18. The doctors don't think this has anything to do with my current condition.
Thanks