Moonmark
Distinguished member
- Joined
- May 6, 2009
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Hi, everyone--
I just wanted to report that I saw a second neurologist at Mass General Hospital on 9/29 and he said he does not think I have ALS "at this time." He does want to see me again in three months, though, but hopefully "at this time" means never. He said if my symptoms have worsened over the three months, he will repeat the EMG and will also do the face and mouth region. He is not sure what is going on with me and suggested I might want to see an MS specialist, since he only specializes in ALS. This neuro was very kind and approachable-- a world of difference from the one I saw earlier. He looked at my tongue and said there are no fasciculations there and I do not have any of the signs such as Babinski, etc. He also said my deep tendon reflexes are brisk at 3+, but said they are still within normal range. The worsening urinary urgency and even incontinence sometimes is more symptomatic of MS, he said, but could also be due to some other problem.
anyway, the only thing that has been uncovered so far is a bad vitamin D deficiency. I was put on a high dose of Vitamin D for a month to see if that helps. I have not been able to speak with my regular GP about the deficiency and its potential causes and symptoms, but I did read that it can cause muscle weakness, fatigue, bone pain and other symptoms. nothing about twitching, though, or increased saliva. so who knows? The twitching has all but died out, though; I hesitate to say that because now it will probably return with a vengeance!
I won't see the GP until Oct 22, but her nurse said she may want to check my kidney function and run some other tests since problems there apparently can cause one to not absorb vitamin D and can lead to problems with the muscles, including twitching. I had a problem with my kidneys from preeclampsia when I was pregnant two years ago and it may be related to that? who knows-- this is just a mystery and I will have to live with the symptoms and uncertainty until someone figures this out.
so, no definitive news yet, but another neuro saying probably not ALS gives me peace of mind. I would like to know what's going on, though.
Incidentally, I am going to my brother-in-law's mom's funeral this weekend. She died of respiratory failure from ALS on Thursday; on the same day, her nephew in Canada also died of respiratory failure due to ALS. She was only diagnosed in January. they have a familial form of the disease. neither wanted a vent. it is terribly sad and my brother in law, who has two young children, is very worried he will develop ALS, too.
anyway, wishing you all the best.
Sandra
I just wanted to report that I saw a second neurologist at Mass General Hospital on 9/29 and he said he does not think I have ALS "at this time." He does want to see me again in three months, though, but hopefully "at this time" means never. He said if my symptoms have worsened over the three months, he will repeat the EMG and will also do the face and mouth region. He is not sure what is going on with me and suggested I might want to see an MS specialist, since he only specializes in ALS. This neuro was very kind and approachable-- a world of difference from the one I saw earlier. He looked at my tongue and said there are no fasciculations there and I do not have any of the signs such as Babinski, etc. He also said my deep tendon reflexes are brisk at 3+, but said they are still within normal range. The worsening urinary urgency and even incontinence sometimes is more symptomatic of MS, he said, but could also be due to some other problem.
anyway, the only thing that has been uncovered so far is a bad vitamin D deficiency. I was put on a high dose of Vitamin D for a month to see if that helps. I have not been able to speak with my regular GP about the deficiency and its potential causes and symptoms, but I did read that it can cause muscle weakness, fatigue, bone pain and other symptoms. nothing about twitching, though, or increased saliva. so who knows? The twitching has all but died out, though; I hesitate to say that because now it will probably return with a vengeance!
I won't see the GP until Oct 22, but her nurse said she may want to check my kidney function and run some other tests since problems there apparently can cause one to not absorb vitamin D and can lead to problems with the muscles, including twitching. I had a problem with my kidneys from preeclampsia when I was pregnant two years ago and it may be related to that? who knows-- this is just a mystery and I will have to live with the symptoms and uncertainty until someone figures this out.
so, no definitive news yet, but another neuro saying probably not ALS gives me peace of mind. I would like to know what's going on, though.
Incidentally, I am going to my brother-in-law's mom's funeral this weekend. She died of respiratory failure from ALS on Thursday; on the same day, her nephew in Canada also died of respiratory failure due to ALS. She was only diagnosed in January. they have a familial form of the disease. neither wanted a vent. it is terribly sad and my brother in law, who has two young children, is very worried he will develop ALS, too.
anyway, wishing you all the best.
Sandra