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-   -   Body Going Downhill - ALS? Other? (https://www.neurotalk.org/neuromuscular/3788-body-downhill-als.html)

MountainView 10-15-2006 09:35 AM
Body Going Downhill - ALS? Other?
 
Hi,

Below is what has been happening - any ideas? directions?

Here has been the trend the last week. Each night I go to bed my body starts to shake - not violently though at this low level. In the morning when I wake up it is still doing this. Some days I can get right up out of bed, though today it felt as if I was paralyzed. I wake up fatigued. The odd thing is as the day wears on things seem to get better, though today my arms and hands are starting off rusty. Overall though this affects me all over. This has been going on occasionally for longer, i.e. months, though has really picked up of late.

That's the main thing. I have an assortment of things going on from my head down to my toes. Hands generally have been okay. Somedays foot drags, other days it does not. Twitching is sporadic. Seems like I have chills as if I am trying to get over something.

The above doesn't sound like ALS, though then what? I can't find too much that fits the above.

Neuro appointment two weeks away. Not that optimistic, though as the clinical exams really only cover a little bit. Any thoughts? Suggestions on other blood work or other teststo inquire about?

Thanks!
MV

lexiathedragongirl 10-15-2006 05:51 PM
What you describe could cover a whole host of possibilities, so don't try and focus on any specific or individual thought - this can lead to obsessive or worrying concerns.

Tell your neuro just what you told us, see if you can't put bit of a diary or timeframe together of just what happened and how the sxs appeared. List things that may have occured at the same time such as a run of illnesses, a bad viral illness, severe stress in your life, an overseas trip, change in diet, exercise etc. It is surprising the proportion of people who visit this forum with similar issues who are marathon runners or have started a very heavy exercise or weight training regime.

Consider a spectrum of blood testing, possibly an MRI and muscle testing of some sort (although this may occur after the blood testing). The neuro should test your strength and reflexes and s/he will know whether you are exhibiting clinical weakness or fatigue related weakness.

My problems occured after a bout of viral illnesses during my second pregnancy, then viral encephalitis two years later. I have never been the same since. It took a long time to dx the problem.

I had muscle weakness, fatigue, tremors, seizures, twitching, headaches, parasthesias, the list is endless.

Start at the beginning; see your neuro and talk over with him/her your sxs. Don't go in with any set ideas on what it might or might not be. Be open to suggestions and testing, and listen to what s/he has to say. If in doubt, you can always get a second opinion.

Good luck, and let us know how you get on :)

Lily 03-28-2007 03:29 AM
happens only at night?
 
I am just curious--does this happen mostly at night? I had some really weird problems for years and was treated with all kinds of meds until I finally went to a sleep disorder center where they hook you up to all kinds of instruments and observe you while you sleep. The brain functions differently at night, it's complicated. I had undiagnosed sleep apnea as well as some sleep paralysis including hypnogogic hallucinations. There is even the disease narcolepsy. (A psychiatrist had already told me I had been hallucinating and tried to give me antipsychotic drugs.) Also, if you aren't sleeping normally, it can cause all kinds of neuro symptoms due to sleep deprivation. I have an unbalanced immune system and it aggravated already existing neurological problems. I don't know, it's just something to think about.

mamafigure 03-28-2007 04:17 AM
You have received some wonderful advice here. The only thing that I can think to add is to make sure that you take someone with you to the dr. You will be surprised as to the difference of what that person will remember and what you will. You will be stressed, and will only take in certain aspects which are often disjointed. A companion will give you a much clearer view of what happened.

Mama

Mattie58 08-03-2007 06:10 PM
This sounds like the same thing that happened to me. For about a year I would get this most nights -- just as I started to drift off to sleep I'd get sort of tremors, especially in my back, which often kept me from sleeping. They were really bad for about a week and then fairly bad for about a year. Now, six years later, I still get them every few months or so. During the daytime I often had twitches and other odd neurological things happening. I eventually diagnosed myself with a variant form of Benign Fasciculation Syndrome. (This after doctors gave me about a dozen diagnoses, ranging from terrible diseases like ALS to "it's all in your head.") The good news is that over time it definitely has almost entirely gone away. Caffeine makes it worse. I found a sympathetic doc who prescribed a small amount of Valium, which I would take on the worst nights so I could sleep. I only took 1-2 Valium per month. In my case I think one of two things caused it. I had a weird virus that caused dizziness, and which may have brought this on also. But the same day that it began I also had a tetanus shot. I've never seen it listed as a side effect of tetanus vaccination, but the timing is suspicious. Best of luck with yours. I think there's a very good chance that, like mine, yours is annoying but harmless and will lessen and go away on its own.

mamafigure 08-05-2007 05:21 AM
I agree that BFS souns logical. I looked up a CDC report about vaccinations and it stated that a side effect of a tetanus shot can be Guillin-Barre Syndrome (sp). GBS does not seem, symptom-wise, a consideration here. Remember that I am no dr, just a concerned Mama.

ptorr 03-06-2008 06:10 AM
Tetanus Vaccine and BFS
 
I have had fasciculations throughout my body constantly for the last three weeks -- ever since I got my second tetanus shot in 5 months! Since BFS is thought to be causally connected to the immune system, I am convinced that the shot had something to do with it. How are you symptoms, now?


Quote:
Originally Posted by Mattie58 (Post 132182)
This sounds like the same thing that happened to me. For about a year I would get this most nights -- just as I started to drift off to sleep I'd get sort of tremors, especially in my back, which often kept me from sleeping. They were really bad for about a week and then fairly bad for about a year. Now, six years later, I still get them every few months or so. During the daytime I often had twitches and other odd neurological things happening. I eventually diagnosed myself with a variant form of Benign Fasciculation Syndrome. (This after doctors gave me about a dozen diagnoses, ranging from terrible diseases like ALS to "it's all in your head.") The good news is that over time it definitely has almost entirely gone away. Caffeine makes it worse. I found a sympathetic doc who prescribed a small amount of Valium, which I would take on the worst nights so I could sleep. I only took 1-2 Valium per month. In my case I think one of two things caused it. I had a weird virus that caused dizziness, and which may have brought this on also. But the same day that it began I also had a tetanus shot. I've never seen it listed as a side effect of tetanus vaccination, but the timing is suspicious. Best of luck with yours. I think there's a very good chance that, like mine, yours is annoying but harmless and will lessen and go away on its own.

AfterMyNap 03-08-2008 06:23 PM
Quote:
Originally Posted by lexiathedragongirl (Post 25892)
What you describe could cover a whole host of possibilities, so don't try and focus on any specific or individual thought - this can lead to obsessive or worrying concerns.

Tell your neuro just what you told us, see if you can't put bit of a diary or timeframe together of just what happened and how the sxs appeared. List things that may have occured at the same time such as a run of illnesses, a bad viral illness, severe stress in your life, an overseas trip, change in diet, exercise etc. It is surprising the proportion of people who visit this forum with similar issues who are marathon runners or have started a very heavy exercise or weight training regime.

Consider a spectrum of blood testing, possibly an MRI and muscle testing of some sort (although this may occur after the blood testing). The neuro should test your strength and reflexes and s/he will know whether you are exhibiting clinical weakness or fatigue related weakness.

My problems occured after a bout of viral illnesses during my second pregnancy, then viral encephalitis two years later. I have never been the same since. It took a long time to dx the problem.

I had muscle weakness, fatigue, tremors, seizures, twitching, headaches, parasthesias, the list is endless.

Start at the beginning; see your neuro and talk over with him/her your sxs. Don't go in with any set ideas on what it might or might not be. Be open to suggestions and testing, and listen to what s/he has to say. If in doubt, you can always get a second opinion.

Good luck, and let us know how you get on :)
Quote:
Originally Posted by mamafigure (Post 83741)
You have received some wonderful advice here. The only thing that I can think to add is to make sure that you take someone with you to the dr. You will be surprised as to the difference of what that person will remember and what you will. You will be stressed, and will only take in certain aspects which are often disjointed. A companion will give you a much clearer view of what happened.

Mama
Ditto! Let's hope and pray that it's something that can be corrected and treated, first, MV!! The neuro gets the big bucks because he/she is educated and trained to recognize this stuff. Give the neuro a chance to evaluate you and listen to you. Try to relax in the meantime, worrying can't help anything. Let us know how it goes, okay?:)

Braveheart07 03-23-2008 11:48 AM
Hi---Just a thought---Have you been checked for Lyme ?? It can acuse all sorts of crazy symptoms, including all the you have mentioned---many labs do a basic blood or spinal fluid test that will often come back negative (false)--there is a lab in CA called IGENEX that is recognized as having the most reliable results---definitelt worth checking into---you can contact them for a "kit" to take to your Dr for the blood work----
Good Luck to you---I hope you feel better------------Doug


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