Does It Sound Like I Have A.l.s. ?

[BLAIRHANNER]

Hi,

I am not sure where to start? But I guess at the beginning is a good place. First off, My name is Blair Hanner and I now reside in Atlanta,Georgia for the past 6 months. Before that I lived in Sarasota, Florida. for 15 years. I am now a 36 year old male and my symptoms presented about 3 years ago I have taken Lopressor & Xanax for my High blood Pressure for the past 15 Years, I am NO LONGER ON ANY MEDICATION. My symptoms began with Muscle Twitching / Fasciculations in my Calf's, Muscle Soreness in my thighs- like a HOT Knife, Joint Pain with lower back pain, Exercise Intolerance & Fatigue, Problems Swallowing- Are really just a funny feeling in my throat " Like I need to clear my throat",

My Blood Pressure has always been high 155/90 and I have been on medication for it since I was 21, " Lopressor" and Xanax. When the above mentioned symptoms began my BP dropped into normal range and has stayed there @110/ 60 not sure why? I am no longer on medication. I had and still have an elevated CPK- 422 - and it has ranged from as low as 189 to 489. I also get Shortness of Breath- and feel the need sometimes to take deep breaths. Oh and when I take ANY medication I get a sinus headache, with Joint Pain and Shortness of breath, and the Twitching becomes very BAD!

I have had a FULL WORK UP including a Muscle Biopsy - ( It was Neg. for everything!) It was sent to Dr. Lee at Virginia University, My Aldolase was 5.0 and Normal, I also have had two (2) Needle EMG- (By the way they REALLY HURT!) The first one was at 4 mos. and the second one was at 14 mos. they were both Neg, EEG was neg, ECHO was Clear, ALL MRI's were Clear & Neg., EKG was also Neg., All other blood work has been Neg., My MYOGLOBIN was a little high at (55).

I have been to MANY, MANY DOCTOR'S, Neurologist, and Rheumatologists they have ruled out A.L.S. But one of my Doctors, told me that is almost sounds like I am being poisoned ? The only thing I can think about is that I have had Silicone Injections many years ago in my face.

Thank you so much for you time and I will look forward to hearing from you soon. PLEASE LET ME KNOW ?

Warmest Regards,

Blair Hanner

 

[liz]

Blair -

You've seen many doctors and have had a complete work up and ALS is clearly ruled out. You are very fortunate there.

As for this mysterious ailment you are experiencing, I'm not sure where else besides your doctors you will eventually find the answer. Good luck to you.

Liz

 

[Omar]

Hey Blair,

I see that you have been experiencing symptoms for 3 years now, but did you neurologist confirme the ALS or it is still a possible ALS, did he ask you to start Rilutek?
Cause twitching itself is not only related to ALS and some people may have it for just a periode of time. What about your conditions now after 3 years? do you feel weaker?

Omar

 

[BLAIRHANNER]

Hi Omar,

I do not feel weaker, But I still have all the same thing's going on! I am really worried that it is ALS .

 

[BLAIRHANNER]

Hi Liz,


Thanks for your reply, Yes I have had a fullNuro work up but from what I understand you can have all the test done and still be postive for ALS ? Not sure, do you think this is true ?

Warmest Regards,

Blair Hanner

 

[Omar]

you know I am not really the expert in that field but I guess and I hope that you are not experiencing ALS. But believe with time everything will be clearer and as long as you don't feel weaker is already great. I don't know about your life style, but I guess It is always good to start a healthy life style (in case you don't). And always think positive and avoid depressions and remember that up till now our neurologist still don't know much about ALS and that it differs from a patient to another.
Stay positive, and if you think that your symptoms could be the result of something else then follow it up with your doctors.

Omar

 

[liz]

Blair -

You have a decision to make here. How much time are you going to spend worrying about the remote possibility that you have a rare fatal disease even after physicians have confidently ruled it out? You could drive yourself nuts going down that path and waste precious days. I think Omar's advice is sound - get on with your life and take care of yourself. It sounds like you're already doing everything you need to do to get your medical situation sorted out. I hope you get answers soon.

Best wishes,

Liz

 

[brooksea]

Blair-
Have you seen Dr. Glass @ Emory ALS Clinic? If you really think you have ALS then you need to be seen by a specialist. There are other diseases that are similar and not fatal and can be treated. General neurologists are not well versed in ALS since it "rare."
CJ

 

[BLAIRHANNER]

Hi Ann Marie,


Yes I did see Dr. Glass at Emory, He told me that He did not think I have ALS- But I am still not sure ? ....Have you seen him also?

 

[Jamiet]

Blair,

This is very controversial what i'm about to say, but, since, you've had tons of test and ruled just about everything else out....... You should check for lyme disease. It's possbile and it hides in your system. You need to do a western blot test.

Look the symptoms up on lymenet or canlyme, you will be amazed, but with the neg mus. biopsy, no ALS, etc etc, it's a possiblity.

I'm not suggesting it, only saying you should eliminate it. Get tested at IGENEX.

If you look at flash discussions on lymenet, there are many people like you....


Good luck

Rgds,

Jamie

 

[liz]

Blair -

What would it take to convince you that you do not have ALS?

Just curious,

Liz

 

[brooksea]

Blair-
My husband got confirmed diagnosis of ALS from Dr. Glass at Emory. If you look at his credentials you will see that he well renowned in the field of neurology and ALS in particular. He is the head of research for ALS at Emory. As Annmarie said, You should feel pretty confident you do not have ALS after being seen by Dr. Glass if he told you it wasn't. Did he offer any suggestions as to what could be causing your problems?

And I agree with Jamie - wouldn't hurt to check out lyme disease.

 

[BLAIRHANNER]

I just want to say thank you to everyone for helping me put my fears to rest! I am just looking for answers ? I just keep going to back to ALS because of the twitching .

 

[BLAIRHANNER]

If you do not mind me asking, how long has your husband had ALS now ?

 

[brooksea]

My husband was diagnosed in Sept 06 by the first neuro we saw. We believe he may have had the symptoms since 12/05 since he was hospitalized at that time for not being able to swallow his own saliva.

Did Dr. Glass suggest any other neurological problems that could present with your symptoms?
CJ