Could I possibly have something other then ALS?

[Al]

Hi vmd. Cindy is the one in the US and may have more information for you. I am up here in Canada and while I have some knowledge of US status I usually depend on members from down there for help. Fortunately we have some people here that have" been there done that" as they say.
AL.

 

[vmd]

Al:

Yes, thanks. I will probably aso have to talk with a lawyer regarding the best way to handle money transfers to my daughter in case the worst happens. Lawyers are so expensive!

 

[CindyM]

I'm a big believer in social workers at the clinics and hospital, if you ever end up in one. They are a wealth of information and very resourceful.

 

[vmd]

Yes, I plan to do this as well.

 

[ltr]

VMD - What have the doctors told you? I haven't been on the forum lately, due to final exams, but I can't see that a doctor has found the problems you are talking about. Do you think, since you say this is happening very fast, that you may be acutely ill with something. You may be suffering from something viral or autoimmune. Fasics alone do not make a positive diagnosis for lower motor neuron problems like you said above in the criteria. I know how you feel, thinking that you are going to succumb to illness before you even get diagnosed because I have been there too. But, you really shouldn't convince yourself you have a terminal illness such as als without an als clinic supporting that. Please try to pinpoint something else that could be making you ill. I know that it is difficult to try and do this, but once you start looking you will see that your symptoms fit other illnesses as well. Good luck.

 

[vmd]

ltr:

Thanks.

I'm trying to stay positive , but each day I encounter another reminder that my symptoms fit the criteria for ALS. I know some of the physical changes I am experiencing can be due to anxiety, but other changes, such as objective weakness, fasciculations all over, measured atrophy, "denting" of the muscle, muscle fatigue, stiffnes, etc., all point to ALS. In addition, when I read about the characteristics of each of these symptoms with respect to a differential diagnosis, the ALS diagnosis is the most likely. The loss of strength and muscle fatigue is particularly troubling because it is now affecting some daily activities. Pulling or pushing any objects is becoming difficult. My right arm feels "dead." It is always tired now and it takes effort to use it. It's almost as if it doesn't belong to me. I am having problems walking up and down stairs as well. My left arm is now fatiguing after some minor activity...and on and on. I certainly feel very ill, but I can't point to anything other than a neuromuscular problem.

In two weeks I see a neurologist. Unfortunately he is not an ALS expert. The referring physician suggested it could be ALS based on a preliminary examination he conducted on my reflexes and strength. The fasciculations have become more common in the last two weeks and during that time I have noticed the atrophy and "denting" changes.

Nevertheless, tonight I am planning to watch a movie with a friend and hope that the symptoms do not intrude.

 

[BLAIRHANNER]

DOOS IT SOUND LIKE I HAVE A.L.S. ? Please let me know ......

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 what you think ? I am REALLY WORRIED !

Warmest Regards,

Blair Hanner

 

[vmd]

Blair:

I would agree with your doctors insofar as it does not sound like ALS. Usually symptoms, such as fasciculations are considered normal in the absence of weakness.