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Moonmark

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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
 
Sandra,

That's great news.... did he refer you to MS specialist. I'm sorry about your brother in-laws family.

Did your twitching die out as you said after your appointment with the ALS specialist.

Yes, I definately understand about the wanting to know what is going on!
 
Sandra,
that is great news! I know how hard it is when you have all these symptoms and no real answers, but I feel like no news is better than bad news. Hang in there, as we all are. Thats probably a good sign that the twitches have subsided.
 
Hi Sandra - That does sound like encouraging news. I have read that more and more people are showing up with Vitamin D deficiency these days, and it can cause a lot of problems. Be sure and get it re-tested after a few weeks to make sure the oral dose is being absorbed, if not they can give it in shots. Of course the classic prescription is sunlight exposure, but seeing as how you live in Massachusetts and winter is coming, you could probably stand outside all day naked and it wouldn't help, especially if you have darker skin. But hopefully the pills will help with your symptoms.

That is really too bad about your brother in law's family. No wonder you are thinking in terms of ALS, it is very natural. My heart goes out to people in those families. It's one thing to get the random form, it's thousand to one odds or whatever and you just got unlucky. But imagine going through life with 50-50 odds hanging over you. I'm sure every time you drop something or trip you'd be thinking, is this it. Is it starting. And then if it does hit you, you'll have had family members go through it, you'll have seen first hand how hard it can be. That would be a real burden to bear. The sporadic or random form is bad enough I guess, but I never forget that there are worse things that can happen in life. I certainly don't have Gehrig's courage to say that I'm "the luckiest man on the face of this earth" but I know that I am far from the unluckiest.
 
Hi, thanks for your responses. Crystal- the twitching has come and gone since this all started last winter or spring, so I am not sure if this is a temporary reprieve or maybe they are gone for good. They were never widespread, but appeared here and there, in places where I seemed to have something going on, such as my hands, which are somewhat weak. I have not had them in my hands for a while. and then I started to get them a lot around my lips and chin and had them there for much of the summer, but the twitches subsided there even before I went to see the second neuro. in the summer, I also started to notice I was having more saliva off and on, but this has not been a continuous thing I have even had a little leakage out of one corner of my mouth and got a fungal nfection called angular cheilitis there from the constant moisture.

I still have a lot of weird random pains and weakness in my hands and right arm and shoulder. I can still do pretty much everything (except play tennis), but I have trouble with things like opening ziploc bags and ketchup packets and a bit of difficulty lifting heavy pans and such or holding my right arm overhead (say while at a clothing store, going through clothes on a rack) for any length of time. lately, I also have a little problem with balance and seem to lose my footing easily. last week, for example, I fell flat on my back while picking raspberries with my daughter. Fortunately I landed in a nice fluffy pile of soil that had just been turned over.

who knows what this is all adding up to, but if two neuromuscular specialists are reviewing my test results and saying they do not think it is ALS at this time, then I will happily accept that. the neuro suggested I could see an MS specialist at Mass General (I think because of the spots seen on brain MRI), but I think I will try to see someone closer to where I live first and also see how my vitamin D regimen goes.

I am sure that the fact that my brother in law's family has ALS made me more aware of this disease and worried that my symptoms seem compatible with the early stages of the illness. Hal, you seem so positive-- I hope that you have a slow progression.

take care,

Sandra
 
Gehrig was a super brave guy, but part of his story was that he did not know he would die of ALS, he thought that he had a fifty/fifty chance of getting better or staying the same. Sometimes I think not knowing wow would I rather that? who knows, I can see it both ways. Either way, he is one of my favorite hero's, but just wanted to give you guys something else to think about. (Because we sure need more)....KiDDING..
 
Hi Sandra,

I'm glad to hear that you got some encouraging news from the second opinion. I would look into the Vitamin D difficiency. I had the same issue a few months ago and found that my Vitamin D was only low because my calcium levels had gotten really high and the body usually lowers the vitamin D levels to help compensate. Vitmain D helps the body to absord calcium and sometimes the low Vitamin D might be masking the high calcium levels and taking a Vitamin D supplement can have a really negative effect, which is what happened to me. When I started taking the Vit-D supplement my calcium levels shot way up (because the Vit-D caused my body to absorb more calcium) and it started causing really bad issues in my nervous system... and still is. Just be aware of this if they're planning to treat the Vit-D difficiency. Keep a close eye on it because it can mimic some of the symptoms of MND. I can try to dig up some of the medical info if it would be helpful. Just shoot me an IM. I hope you feel better soon!

John
 
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