ALS or something else

[4t1074]

32 Yr male.  Had prob with my throat for years and have not felt good for sometime in general.   Muscle twitching started, all over in all muscles below head at random. No atrophy or weakness. 9-26-06 went to see neuro, very concerned about ALS. Stated was not, No weakness/atrophy, reflexes good, neg bab. Put me on effexor-made me feel weird.  Went back to neuro 5 days later, very high ALS anxiety, due to feelings of my throat (feels like something in it), still swallow & breath easy, have to clear throat alot.  Bottom lip numb, speech different, noticable by me only, have to wipe spit off my lip all time now.  Put me on Lexapro, and he perf. a very short EMG in my left: arm, shoulder, hand muscles, he stated it was "quiet", so he didn't need to go further to my legs. Brain MRI - Neg. I have since went for op. w/ 2nd neuro, he looked at my upper extrem and feet, no weakness, no atrophy, stated in all his years in practice, everyone that pres to him with ALS, that by the time they got to doctor, the exam would have found weakness/atrophy. come back in 3 mos. I am now at a loss, because i feel very bad all the time, my twitches are still here, but have decreased, but are more focused in left arm,right thigh/leg, with occ. other places. My legs now feel if electricity is in them with "very rapid light twitches" ever 2 min in rt thigh. My rt. calf & lft arm area is sm than opposite. I have "attacks" where fingers cramp and back muscle is tight and severe fatigue. I still feel horrible all the time . What is yr opin on above and what should my next move be. I'm still conc w/ ALS

[4t1074]

You guys are wonderful!

[lat67]

Wow...theses guys are right on the money.  It amazes me how so many people feel this way and yet we are still having these crazy symptoms.

As for me I spent two years totally convinced I had MS. I went to two neuroligists, rhumatoligist, Infectious disease etc...Every test I have had has been totally normal.  I even had a lumbar puncture and it was clear.  The worry over the disease can be worse then the disease if that makes sence.

I finally went to a MS clinic last week where a very well respected doctor in MS said there was no way it was MS.  I finally believe I dont have the disease.  Mentally I feel great about things but my symptoms are still there.

I was diagnosed witth Lyme in May which I can now accept as what I have.  Since I have started treatment I am now totally sure it is what I have because of the way my body is re-acting.

At any rate  I hope we all find answers of what we have and how to deal with it.Heres my email for anyone wanting to chat about all this crazyness.  ***@****

Lesley

[jeffro2006]

I work as a computer and application trouble-shooter and its amazingly similar to being a doctor trying to find out whats wrong.  People call in and I have to determine what the problems are based on symptoms, just like a doctor does with patients.  

Half of the time, the people call in with "vague" but nagging issues that I cannot immediately put my finger on, and this requires tons of troubleshooting.  These usually end up being no problem whatsoever, or something I can't solve (which I refer to a specialist).  Over time, I really don't like to take these types of calls, as they are not that easier "here is what is going on and here's how to fix it".  I think its the same with most docs.  They don't want "vague" issues.  They want something they can solve and fix, or atleast something they can identify.

I was asking a good friend of mine (who is a MD) how he handles seeing constant people in ERs in pain, wounded, etc.  He says he eventually got numb to it.  Docs see this stuff all the time, so they eventually go numb to most of it.

[John_Madison CT]

When I was ill (viral meningitis) and not sure what I had, or wasn't 100% the Docs really knew, I obsessed over it.  It ran through my head constantly with no relief.  The anxiety this created make me even more ill.  I had muscle twitching, pain all over, head fog, shaking hands, pain behind my eyes, weird headaches....I can go on and on.

The Doc put me on Zyprexa and Paxil, in low doses, and once they kicked in (the first week was very hard), I started to feel much better.  I would not obscess over my illness and I started to think more clearly.

With the reduction in my anxiety, all these weird symptoms I mentioned above, disappeared.   In a few days I got measureably better.

The mind is very very strong at created symptoms of all kinds.  You seem to be in a bad place where your mind is running away from you, so perhaps you need stronger meds to bring it under control.  Don't be afraid to admit that there is a possibility that your symtoms are being created by your anxiety and possible depression.

[lat67]

I totally disagree...respecfully that is.

I am so sick of Doctors not getting that I am sick and that it is all because of anxiety.  I would not have anxiety if I didn't have all these crazy symptoms.
I am sure if you asked most people dx with Lyme disease they would tell you doctors tried to blame it on anxiety.

For me, at least I was strong enough to keep at them until someone finally dx me with Lyme disease.

Lesley

[4t1074]

Is there some type of forum where we can chat / email, as it will be good to talk to people with the same problems?  It's consuming my life at this moment.  

I've got a friend that's really connected in the ALS / MND community, because her daughter has it. At any juncture, i would be more than glad to help anyone who was ever experienced a pinch of what i am and will let you know what the workup is and whom its with.  I don't have all the info yet, but will let you know.  I am praying it's anxiety.