Need Feedback from You; The Experts

[SandraD]

Hi Rhythman,

I am by no means an expert on ALS and have not been diagnosed with anything yet, but thought I would post to share my experience. I have had an 8 month or longer history of muscle weakness, pain, on and off twitching, some thinning of my forearms and hands, and on and off saliva issues. It's getting harder for me to grip a pen with my right hand and open small food packets and ziploc bags and such. I had an EMG in June on three limbs and all was within the normal range. Two neuros are saying no ALS at this time, but the second one at a large, well-respected ALS clinic in Boston wants to follow me at three-month intervals and said he will repeat EMG after next visit if there is significant worsening. In the process of testing, it was revealed that I have a bad vitamin D deficiency, and I am now taking a large dose of D. it can take a month or more for one's body to fully absorb this vitamin, but in my reading, it seems that deficiencies can cause bone pain, fatigue, muscle weakness, and other problems.

I won't bore you with a retelling of my symptoms, but you can look at my posts if you wish. I am just writing to say: don't necessarily assume ALS with these symptoms. I still have a niggling fear about this myself, though, because of my continuing problems, so I continue to visit here and post questions. The second neuro also suggested to me that I may want to follow up with an MS specialist as well. he did say, however, that muscle twitching is not particularly common in MS and also noted there would be more sensory symptoms, which I do not have. I think you mentioned burning sensations, which would be sensory and point more towards MS.

anyway-- good luck. don't fear the EMG or the nerve conduction test. I did not find either to be painful, only uncomfortable.

Sandra

[katmomma]

Sandra -
what type of dosage of vitamin D are you taking per day? Also what brand did your doctor recommend? I started taking this also, I've just read a lot of different literature on how much is good enough. I read somewhere that your body can absorb up to 20 IU's of vitamin D per day, whereas the RDA for vitamin D is only like 400 or something really low. I don't know where you are from, but in Michigan, we basically see the sunlight just 4 months out of the year or so. I have an aunt with MS, and she said that Michigan and a lot of the northern states - MS is extremely prevalent compared to lower states, and in places like Costa Rica which is right by the equator, MS is not even talked about. I wonder if ALS has a similar pattern?

[laurel]

Hi Katmomma,
Take a look at the Vitamin D thread under general discussion. Dr. Baker who has contributed some info. several times is a Vitamin D expert. We are taking 3000 iu's daily now (hubby and self). Long ago our GP recommended 2000 iu's and we just upped it about 2 months ago.
Laurel

[olly]

rhythman.
ms can effect anywhere in the body and many areas at a time.
the nerves supplying the bulbar areas can be damaged causing bulbar symptoms.
there is 100% muscle twitching with ms,my neuro looked for it.
ms can effect the grey matter or umn areas causing umn symptoms like spasms and cramp.
you should get a 2nd opinion and another mri to rule ms out first before thinking of anything else.

in the end regardless of the clear mri's ms was ruled out in my case as my optic nerves continued to look good.
my aunt had ms for over 30yrs,she sadly died of a brain hemmorage.
i remember when i was a child she was in a wheelchair,yet later years before she died she could walk ok with a stick.
i do remember her voice always seemed weak and shakey.

[SandraD]

Hi- I am taking a prescription Vitamin D of just 1000 international units (IU) a day, in addition to my regular multivitamin, which contains 400 IU. I do not think this is a particularly high dose. I think Vitamin D is Vitamin D, however, and you can just buy it over the counter, but for some reason my GP wrote a scrip. wow-- 3000 IU daily? I will have to ask about that. maybe I am not taking enough? I would not pursue any type of high dose supplement, however, without the approval and supervision of a doctor. Naeco posted that he was taking a high dose of D and it affected his calcium levels, which contributed to his problems.

Maybe Dr. Baker who has posted about Vit D here could chime in?

as for MS, they will do a lot of different tests for that, too. I had a brain MRI, cervical spine MRI and evoked potentials. The only one that had some issues was the brain MRI, which showed a few scattered lesions, but not of the type or size that the first neuro felt was consistent with MS. That, minus numbness and other sensory symptoms, leads him away from MS.

Sandra

[rhythman]

Originally Posted by halfin

Here's another data point I found that should be encouraging. Bulbar (mouth) onset ALS is very rare among younger people. Your symptoms are largely bulbar so you would tend to fall into this category. I found a study, http://www.enmc.org/uploaded/FILES/E...lla%202006.pdf , which examined 130 PALS and not one of them with bulbar onset was younger than 45. You say you are in your early 40s so probably younger than this. So if you do have ALS, which is itself a very rare disease, you would be an extremely rare subtype to have bulbar involvement right at the beginning, at such a young age. This would therefore point away from ALS as an explanation, which would be a good sign.

Thanks for the link Hal! I appreciate the words of encouragement and really needed something this morning.

My band played last night, and although I did fine playing the songs (drums), I noticed that all 4 limbs fatigued early on, and stayed that way. After the first set, my legs and arms felt really heavy and all were twitching like mad. I had some slurring while talking with my bandmates, but what scared me the most was after the set. I could only speak really slowly...one guys said jokingly "What's with you, you sound like you had a stroke or something." Needless to say, I was sad driving home alone at 3am.

I'm trying to stay positive, and the people on here are really helping a lot. It's especially confusing when some symptoms seem to come and go or at least change in severity from day to day. I keep trying to tell myself that it could be something besides bulbar onset als.

Anyway, I appreciate the continued support. Thanks.

[rhythman]

Originally Posted by SandraD

Hi Rhythman,

I am by no means an expert on ALS and have not been diagnosed with anything yet, but thought I would post to share my experience. I have had an 8 month or longer history of muscle weakness, pain, on and off twitching, some thinning of my forearms and hands, and on and off saliva issues. It's getting harder for me to grip a pen with my right hand and open small food packets and ziploc bags and such. I had an EMG in June on three limbs and all was within the normal range. Two neuros are saying no ALS at this time, but the second one at a large, well-respected ALS clinic in Boston wants to follow me at three-month intervals and said he will repeat EMG after next visit if there is significant worsening. In the process of testing, it was revealed that I have a bad vitamin D deficiency, and I am now taking a large dose of D. it can take a month or more for one's body to fully absorb this vitamin, but in my reading, it seems that deficiencies can cause bone pain, fatigue, muscle weakness, and other problems.

I won't bore you with a retelling of my symptoms, but you can look at my posts if you wish. I am just writing to say: don't necessarily assume ALS with these symptoms. I still have a niggling fear about this myself, though, because of my continuing problems, so I continue to visit here and post questions. The second neuro also suggested to me that I may want to follow up with an MS specialist as well. he did say, however, that muscle twitching is not particularly common in MS and also noted there would be more sensory symptoms, which I do not have. I think you mentioned burning sensations, which would be sensory and point more towards MS.

anyway-- good luck. don't fear the EMG or the nerve conduction test. I did not find either to be painful, only uncomfortable.

Sandra

Thanks for sharing and taking the time to respond.

I'm always sorry to read about anyone having issues such as yours, but I do appreciate your sharing because it does show me that sometimes people do have ongoing symptoms and a diagnosis of als is not always a definite outcome.

I do fatigue easily in all limbs, but I've no noticable loss of strength at the gym. I have had several instances of my feet, and hands to a lesser extent, 'falling asleep'. This 'pins and needles' feeling can occur after sitting, sleeping or even while standing.

Thanks for the info about the EMG and NCT...I can do discomfort, but am not a huge fan of pain.

[rhythman]

Originally Posted by olly

rhythman.
ms can effect anywhere in the body and many areas at a time.
the nerves supplying the bulbar areas can be damaged causing bulbar symptoms.
there is 100% muscle twitching with ms,my neuro looked for it.
ms can effect the grey matter or umn areas causing umn symptoms like spasms and cramp.
you should get a 2nd opinion and another mri to rule ms out first before thinking of anything else.

in the end regardless of the clear mri's ms was ruled out in my case as my optic nerves continued to look good.
my aunt had ms for over 30yrs,she sadly died of a brain hemmorage.
i remember when i was a child she was in a wheelchair,yet later years before she died she could walk ok with a stick.
i do remember her voice always seemed weak and shakey.

Thanks for the insight on MS olly. A good friend of mine at work and a first cousin (both females) have MS, but their symptoms tend to be asymetrical. I had no idea that it could cause lots of other problems. That is encouraging as I try to reassure myself that their might be reasons other than bulbar onset als.

That's sad about your aunt, but interesting that she could walk with a stick later on.

Believe it or not, the most troubling symptom for me is the change in my tongue appearance the past 2 weeks. It appears to be flatter, floppier and as soon as I put a toothbrush to it, it goes 'concave' and I gag. I'm somewhat sure (wish I could remember definitely) that my tongue behaved like this, but to a lesser extent, the last time I had an 'episode' with left side weakness in 2000. I guess it could be another bulbar consequence. Have you ever heard of anything like this in your?

Thanks again and take care.