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minnerhead1

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Joined
Aug 30, 2012
Messages
9
Reason
Learn about ALS
Country
US
State
Missouri
City
Lebanon
About 2 years ago, I started having twitching all over my body. Some twitches were quick and some were like worms crawling under my skin. The symptoms sprang up from there. Here are the symptoms that I currently have now and these have progressed within the past two years:

Muscles are shaky but only when in use and also after use which eventually goes away after they rest. I'm still strong, I can lift anything I want, but they are getting shakier as time goes on. Worse when I'm stressed. This goes throughout my whole body. Legs, arms, if I raise up and hold my stomach muscles (like starting to do a sit up) my stomach muscles shake hard. If I lift anything with my arms or legs but they shake hard also.

My tongue gets sores on the end of it, circlular in nature and sometimes they get white patches. My tongue is also scalloped. The white patches seem to be more in the moring when I first wake up and go away after I get going. My tongue is also numb on the end and I do have trouble pronouncing different words. Also, if I stick my tongue out and make it tight and let off I can see it crawl. The sores come and go, but the feeling of numbness and misprouncing words is starting to stay. Sometimes my tongue hurts, like I can feel it being attacked. I'm progressively getting worse.

My jaw muscles have been spasming lately and there is a feeling of weakness but I'm still chewing normal.

Swallowing has changed within the last couple of months. Food seems fine, but spit just doesn't seem to go down all the way. If feels like it gets stuck and I have to clear my throat and swallow 2 or three times to get a good swallow.

Fatigue is there also. I used to have quite a bit of brain fog, but that has gotten better here recently.

I seem to be more clumbsy. Dropping things more often, running into the side of the doorway on the way out, etc.

I have had a couple of swollen lymph nodes also. This only happened one time.

I have had 3 MRIs and nothing has shown up along with numerous blood tests. I have seen a neurologist and she has finally recommended me to go to Washington University in St. Louis.

I have not had an EMG yet. She said that she does not think I have ALS, Parkinsons, MS, etc. but she is stumped. She said that Washington U will do an EMG and she could do it but does not want to put me through two.

I have went to a lymes doctor and he said that I do have lyme bacteria from my test even though it came back negative. I did have some positive bands that are specific for lymes. I have taken many different antibiotics which have not helped me yet.

I went and saw my lymes doctor again yesterday and he seemed stumped. He said I'm very unique and that maybe I should go ahead and go to St Louis. He said that I would probabl fail the EMG and they wouldn't be able to help me, but they might find something he has missed. It was a VERY disappointing appointment.

So, here I am. Wondering what to do. I still have two more antibiotics to try, and he said if they don't work he wants to put in a pic line my arm and try iv antibiotics.

I have tried going off gluten for awhile but it didn't help me.

I'm just not really sure what to do. Does the whole body shakyness without weakness sound like ALS? Does sores come and go with tongue numbness with ALS? Has anyone with ALS had these symptoms in this way?

I'm 33 years old and am thinking for me to actually have ALS (bulbar style) would be extremely rare but I seem to be getting worse.

Anybodys input would be very much appreciated.

Thank you,

Steve
 

edwards5257

Distinguished member
Joined
Jul 16, 2012
Messages
159
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
KY
City
Paducah
About 2 years ago, I started having twitching all over my body. Some twitches were quick and some were like worms crawling under my skin. The symptoms sprang up from there. Here are the symptoms that I currently have now and these have progressed within the past two years:

Muscles are shaky but only when in use and also after use which eventually goes away after they rest. I'm still strong, I can lift anything I want, but they are getting shakier as time goes on. Worse when I'm stressed. This goes throughout my whole body. Legs, arms, if I raise up and hold my stomach muscles (like starting to do a sit up) my stomach muscles shake hard. If I lift anything with my arms or legs but they shake hard also.

My tongue gets sores on the end of it, circlular in nature and sometimes they get white patches. My tongue is also scalloped. The white patches seem to be more in the moring when I first wake up and go away after I get going. My tongue is also numb on the end and I do have trouble pronouncing different words. Also, if I stick my tongue out and make it tight and let off I can see it crawl. The sores come and go, but the feeling of numbness and misprouncing words is starting to stay. Sometimes my tongue hurts, like I can feel it being attacked. I'm progressively getting worse.

My jaw muscles have been spasming lately and there is a feeling of weakness but I'm still chewing normal.

Swallowing has changed within the last couple of months. Food seems fine, but spit just doesn't seem to go down all the way. If feels like it gets stuck and I have to clear my throat and swallow 2 or three times to get a good swallow.

Fatigue is there also. I used to have quite a bit of brain fog, but that has gotten better here recently.

I seem to be more clumbsy. Dropping things more often, running into the side of the doorway on the way out, etc.

I have had a couple of swollen lymph nodes also. This only happened one time.

I have had 3 MRIs and nothing has shown up along with numerous blood tests. I have seen a neurologist and she has finally recommended me to go to Washington University in St. Louis.

I have not had an EMG yet. She said that she does not think I have ALS, Parkinsons, MS, etc. but she is stumped. She said that Washington U will do an EMG and she could do it but does not want to put me through two.

I have went to a lymes doctor and he said that I do have lyme bacteria from my test even though it came back negative. I did have some positive bands that are specific for lymes. I have taken many different antibiotics which have not helped me yet.

I went and saw my lymes doctor again yesterday and he seemed stumped. He said I'm very unique and that maybe I should go ahead and go to St Louis. He said that I would probabl fail the EMG and they wouldn't be able to help me, but they might find something he has missed. It was a VERY disappointing appointment.

So, here I am. Wondering what to do. I still have two more antibiotics to try, and he said if they don't work he wants to put in a pic line my arm and try iv antibiotics.

I have tried going off gluten for awhile but it didn't help me.

I'm just not really sure what to do. Does the whole body shakyness without weakness sound like ALS? Does sores come and go with tongue numbness with ALS? Has anyone with ALS had these symptoms in this way?

I'm 33 years old and am thinking for me to actually have ALS (bulbar style) would be extremely rare but I seem to be getting worse.

Anybodys input would be very much appreciated.

Thank you,

Steve
Go to Wash U! I did and while nothing showed up I am glad I went. I sometimes just think they cannot find what is wrong.
But def go! I return at the end of Oct. there.
Like you numerous blood,
MRIs and EMGs done.
Regards!
Larry
 
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