Hudson
Member
- Joined
- Jun 21, 2017
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 02/2018
- Country
- US
- State
- New York
- City
- New York City
I have been seeing a top neurologist for several months. He has told me that I might have ALS, although I might also have some other MND or some form of neuropathy. I would appreciate any thoughtful reactions based on the following facts. I realize that any views expressed have limits, but at this point I could very much use a reality check because the uncertainty is taking a toll on me and my family.
I am a 64 year male. Roughly one year ago, I experienced difficulty in swallowing certain foods. Certain foods would get stuck in my throat, although I could cough them up or wash them down with water. I went to an ENT doctor. He ran some tests, diagnosed acid reflux and prescribed medication for that.
However, the swallowing problems persisted, and I experienced intermittent issues with my speech where it was not as crisp as it normally is. (People who didn't know me wouldn't necessarily recognize the issue, but people who knew me would sometimes notice it.) Also, in late 2016, I experienced a weakness in my right hand involving the thumb and the index finger. I went back to the ENT doctor, and he recommended that I see a neurologist.
In December 2016, the neurologist examined me and said he thought I had some type of neuromuscular disease and mentioned ALS as one possibility. He then had me undergo several tests (CT, MRI, PET/MRI brain scan, EMG, blood tests, genetic testing).
In February 2017, the neurologist identified two possible diagnoses: ALS and MMN. (I also had one very memorable experience in January with cold paresis, which also suggested I might have MMN.) I then began IVIG treatment.
It's now June 2017, and I have been getting IVIG treatment every two weeks since February. I continue to have swallowing issues, intermittent problems with my speech, hand weakness, and weakness in my right bicep. I have had some muscle twitches near my right elbow and occasionally in my right leg. On the other hand, I continue to exercise 6-7 days a week. (I run 6 miles, work out with weights, do Pilates, etc.) I haven't noticed any significant deterioration or new symptoms in the past few months.
My neurologist is concerned that I don't seem to be improving from the IVIG, although he decided today to increase the dose in upcoming treatments. On the other hand, he seems somewhat encouraged that I don't seem to have new weaknesses. He continues to think I may have ALS, or some other type of MND, or some type of neuropathy.
Any reactions would be appreciated. Thanks in advance!
I am a 64 year male. Roughly one year ago, I experienced difficulty in swallowing certain foods. Certain foods would get stuck in my throat, although I could cough them up or wash them down with water. I went to an ENT doctor. He ran some tests, diagnosed acid reflux and prescribed medication for that.
However, the swallowing problems persisted, and I experienced intermittent issues with my speech where it was not as crisp as it normally is. (People who didn't know me wouldn't necessarily recognize the issue, but people who knew me would sometimes notice it.) Also, in late 2016, I experienced a weakness in my right hand involving the thumb and the index finger. I went back to the ENT doctor, and he recommended that I see a neurologist.
In December 2016, the neurologist examined me and said he thought I had some type of neuromuscular disease and mentioned ALS as one possibility. He then had me undergo several tests (CT, MRI, PET/MRI brain scan, EMG, blood tests, genetic testing).
In February 2017, the neurologist identified two possible diagnoses: ALS and MMN. (I also had one very memorable experience in January with cold paresis, which also suggested I might have MMN.) I then began IVIG treatment.
It's now June 2017, and I have been getting IVIG treatment every two weeks since February. I continue to have swallowing issues, intermittent problems with my speech, hand weakness, and weakness in my right bicep. I have had some muscle twitches near my right elbow and occasionally in my right leg. On the other hand, I continue to exercise 6-7 days a week. (I run 6 miles, work out with weights, do Pilates, etc.) I haven't noticed any significant deterioration or new symptoms in the past few months.
My neurologist is concerned that I don't seem to be improving from the IVIG, although he decided today to increase the dose in upcoming treatments. On the other hand, he seems somewhat encouraged that I don't seem to have new weaknesses. He continues to think I may have ALS, or some other type of MND, or some type of neuropathy.
Any reactions would be appreciated. Thanks in advance!
