Aa
What else could it be?
My husband has had 2 EMGs, They say they think it is ALS but the doctor is amazed because he isn't getting much worse and it has been 3 years. His breathing is a little worse but his twitching is alot better. Almost none. He has no trouble swallowing is still very strong. He has never missed a days work. The main problem he has is with his hands. He has a hard time buttoning shirts and doing intricate things.He can still grasp things and lift but has hard time getting lids off jars, etc.
Does anyone have any ideas? I just find it hard to believe he has ALS and isn't getting worse quicker. I had a friend who died last year and she was only diagnosed with ALS like 18 mo. before. I have read where the average span is 3-5 years. Is that not true? Has anyone else known anyone wth "slow progression" and if so how long did they make it?
Does anyone have any ideas? I just find it hard to believe he has ALS and isn't getting worse quicker. I had a friend who died last year and she was only diagnosed with ALS like 18 mo. before. I have read where the average span is 3-5 years. Is that not true? Has anyone else known anyone wth "slow progression" and if so how long did they make it?
Sounds like what I am going through now. Doctors can't decide about me either. 2 EMG's, multiple MRI's, bone scan & nuclear medicine. My symptoms started 14 mos, ago (weakness in left wrist). Now the weakness entails my whole left arm, hand and left ankle although I now seem to be restoring some muscle tone above the elbow. No pain or neuropathy. Left foot slightly turned inward.
Have either one of them been tested for prior diseases such as Creutzfeld-Jacob Disease the human form of Mad Cow?
Cindy, What you are describing sounds exactly like my husband. It has been two years and he has weakness on only the left side of his body. They found one lesion in his brain MRi, but not enough to say it is MS. He also had a spinal tap and they found oligoclonal bands. We live outside of philadelphia so the doctors continue to say they have never dealt with a case like his before. He is under 30 and it is only affecting one side of his body. We are desperately trying to figure out what it is. My husband also has trouble using his hands and fumbles with buttons and lids. He also walks with a limp, other than that there are no other signs. What tests have been done on your husband? How old is he?
Dr. Stephen Hawking is a very famous physicist. If you google his name you will find him. I believe that he got worse gradually to the point that he is in a wheelchair and uses a computer to talk. His mind still appears to be sharp. He wrote a book I believe last year about the creation of the universe.
You need to stay the course. If it is ALS, then you need to find the best person in your particular area and see that person. The reason I mentioned Dr. Rothstein from Hopkins is because he is a PhD,MD which means a researcher and a physician. They are usually on the cutting edge of new therapies.
We are our own best advocate. Your husband could have ALS and it could just be progressing slowly but at the same time you need to know what you can do now to keep it slow if possible. There has got to be something to do instead of just sit and wait for it to get worse. I know it has to do with the formation of plaques and what I don't know is if there is a way to slow plaque formation down.
There is nothing stopping you from emailing Jeff Rothstein. You can just say you came across his name and you are very confused. Relate what is going on with your husband and see if he responds. There is only so much he can say since your husband isn't his patient but he may be able to give you more in the way of an explanation.
You need to stay the course. If it is ALS, then you need to find the best person in your particular area and see that person. The reason I mentioned Dr. Rothstein from Hopkins is because he is a PhD,MD which means a researcher and a physician. They are usually on the cutting edge of new therapies.
We are our own best advocate. Your husband could have ALS and it could just be progressing slowly but at the same time you need to know what you can do now to keep it slow if possible. There has got to be something to do instead of just sit and wait for it to get worse. I know it has to do with the formation of plaques and what I don't know is if there is a way to slow plaque formation down.
There is nothing stopping you from emailing Jeff Rothstein. You can just say you came across his name and you are very confused. Relate what is going on with your husband and see if he responds. There is only so much he can say since your husband isn't his patient but he may be able to give you more in the way of an explanation.
Did Mr. Hawking get worse gradually or stay the same? What did they do for him? Where can I read about him? I'm just frustrated because they don't seem to be looking for anything else that it could be. I want answers and no one seems to care.
Stephen Hawking has lived more than 40 years with ALS. I'm not sure what makes one person live longer than another.
Where do you live? There is an excellent researcher/physician here at Johns Hopkins who is very well noted in the field of ALS
http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/profiles/team_member_profile/1204BCCE82BA0CC842233EB2897C0246/Jeffrey_Rothstein
You can look up his research online.
Best of luck to your husband and to your family.
Where do you live? There is an excellent researcher/physician here at Johns Hopkins who is very well noted in the field of ALS
http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/profiles/team_member_profile/1204BCCE82BA0CC842233EB2897C0246/Jeffrey_Rothstein
You can look up his research online.
Best of luck to your husband and to your family.
Have an Answer?
You are reading content posted in the Amyotrophic Lateral Sclerosis (ALS) Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
