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Deb4886 10-29-2005 09:50 AM

Could this be ALS?
 
Hello:
Thanks first to anyone who responds - I have become frantic in my search for what is causing these symptoms. First started with pain similar to toothache pain in both legs, Progressed to tremors in legs and pins and needles in hands and feet. Ringing in my ears when I lay down at night to go to sleep. Fasticulations all over my body. Legs feel very heavy especially when climbing stairs. Extreme fatigue no matter how much sleep I get. This has been going on for 9 months. After physical activity of any kind it takes days to recover my strength. Yesterday I was watching TV and had my feet up and noticed my toes on both feet moving slightly and I could feel my muscles sort of surging down my legs. I have been to a neurologist and my primary physician ordered an MRI. Neurologist said he saw no evidence of a nerve disease but to come back if I had trouble swallowing. Also can't seem to remember things or concentrate the way I was able to before all of these symptoms. I have had blood tests twice and there is no evidence of Lyme disease or anything else to explain the symptoms. My primary Dr is stumped. Does this sound like early ALS? :confused:

djs 11-02-2005 04:10 AM

Re: Could this be ALS?
 
Hi Deb, Sorry you have the symptoms use have, Pain, pins & needles, Ringing in ears, poor memory, poor concentration, are not common symptoms of als.

Good luck :)

Deb4886 11-03-2005 04:22 PM

Re: Could this be ALS?
 
Hello Susan:

Thanks so much for replying - I am in Maryland. Yes - I had a Lumbar spine MRI and the neurologist said there is no evidence of a neuro-muscular disease. The primary physician keeps suggesting that I may have chronic fatigue syndrome but has not officially made that diagnosis. i am getting very frustrated with him becaue this has gone on for over 9 months and I continue to be anxious - imagining the worst.

Florida Lori 11-17-2005 12:09 PM

Re: Could this be ALS?
 
[QUOTE=Deb-MD]Doesn't anyone have any thoughts - bad or good I want to know what you think - Please :wave:[/QUOTE]
I think it sounds like Als , my mother is always tired, and very forgetful. Almost to the point where we can tell her something and she still is very confused. She talks like she is drunk and everyone asks her if she is. She sits and cries all the time, she had cramps in her legs and feet at one time. Constant Migranes, losing weight to almost a pound a day. I am petrified on what is going to happen next...

Maryfred 11-21-2005 05:43 PM

Re: Could this be ALS?
 
I'm also scared to death that I have ALS. When I had an EMG test and the NCS, my neurologist said something didn't fit with ALS, but as other possibilities are being eliminated, ALS keeps popping up.

Still waiting on DHL tests at Athena Diagnostic, for a heriditary disease, CMT. It's taking 2 months, and in the meantime I'm getting so weak, that my neurologist is thinking that it's something else. Had a spinal tap last week that was normal.

Will see a specialist in the Houston medical center next week, to get his opinion.

It's hard to be brave with this possibility.

Mary

Saddy2 11-21-2005 06:39 PM

Re: Could this be ALS?
 
Hi Deb, Don't mean to be rude, but how old are you. Take a look at the menopause page. They all have the same symptoms.

Erika2610 11-21-2005 11:27 PM

Re: Could this be ALS?
 
[QUOTE=Deb-MD]Hello Susan:

Thanks so much for replying - I am in Maryland. Yes - I had a Lumbar spine MRI and the neurologist said there is no evidence of a neuro-muscular disease. The primary physician keeps suggesting that I may have chronic fatigue syndrome but has not officially made that diagnosis. i am getting very frustrated with him becaue this has gone on for over 9 months and I continue to be anxious - imagining the worst.[/QUOTE]

My grandmother had ALS.. I don't think it sounds like it. It could be Chronic Fatigue.. which is hard to diagnose from what I hear. Or have you thought about maybe Fibromyalgia? Why don't you hop on over to those threads and read about some of the symptoms?

dango 11-25-2005 07:08 AM

Re: Could this be ALS?
 
I have had similar experiences and cab certainly empathize. I think Docs are overly cautious when they know VERY WELL that they have a patient who meets the criteria for Myofascial Pain Syndrome and/or Fibromyalgia. That certainly SOUNDS appropriate to your symptoms. People have bands of muscle with knots in them called "trigger points" that cause aching all over. Most of the time people don't know they have these "knots". If someone pushes on one--it will just about send you through the roof--or givr you really weird sensations in another part of your body. Fatigue, depression and loss of concentration go along with this illness. There is no blood test or xray to rule it out. It has significant over lap with Fibromyalgia. Many people have both conditions. Fibro is diagnosed by a Doc examining you and looking for pain responses. MY physiatrist, when I explained my "hurting all over" pain, told me I had a Myofacial Pain Syndrome BECAUSE "he doesn't like to use the word fibromyalgia". It's over used. Doctor's can be VERY biased--just like the rest of us,

I wish you well in you search for help and understanding.

kathyd 11-30-2005 05:26 PM

Re: Could this be ALS?
 
Sounds like fibromyalgia to me. I have had it for several years and these are definitely alot of the symptoms.

nosevlas 12-08-2005 06:14 PM

Re: Could this be ALS?
 
Deb, what have you learned about your diagnosis by now? I have had exactly the same scenario and have been trying to get a diagnosis for 6 months now. Thanks, Glee

SWEDIE 12-12-2005 09:24 PM

Re: Could this be ALS?
 
[QUOTE=nosevlas]Deb, what have you learned about your diagnosis by now? I have had exactly the same scenario and have been trying to get a diagnosis for 6 months now. Thanks, Glee[/QUOTE]
Dear DEB,
I have recently read about the very very scarey symptoms you have been experiencing. I am hoping you have a diagnosis by now. I have just a little info to offer you; My 50 yr old male cousin was diagnosed long time ago (hes been gone 15 yrs. approx. first 6 months- said he felt super strong. Told each of us to put our hand on his deltoid muscle (arms-bilateral) and "feel the motor running?" Other than that symptom he was fine and had none of your other symptoms . At the end of that year we noticed "overlaughing (hyper-emotions). Of course he had major depression when he found out---- but was good (seemed strong) for quite a while (he went to Hawaii on vacation with us. He had a good time in spite of his diagnosis. He also danced at a family summer party (that was almost 2 yrs after initial dx). His third year -than advanced symptoms-mostly trouble swallowing....and that is what we remember about his als.
I am a senior citizen now and have been thru 2 bad scares in my own lifetime. Not als but ms (I was positive I had it when I was in my 30s. All symptoms just fit right in. Well-disappeared eventially. Worse part was really the sheer panic over a possible central nervous system disease. Most of the things in my life that I worried myself sick over-never came about.
Good chance your headed for better health-maybe by Spring? Hope with all my heart your doin better. Prayers with you,Dearie. SWEDIE

airey 12-15-2005 12:49 PM

Re: Could this be ALS?
 
I feel so bad for the people on this site sitting around waiting for a diagnosis. It must be horrible to not know and wonder if they have ALS. ALS is about the worst disease in the world, I just lost a friend from it. I still remember when he told me his diagnosis. He was so scared. They gave him 5 years, he died just under 4.

marky1956 01-16-2006 05:05 PM

Re: Could this be ALS?
 
I agree Airey.... ALS is freightening to comprehend. And when we go to research what are most likely benign muscle twitches and other minor symptoms, ALS pops up!

From what I've gathered on ALS over the past few years (I've had crazy symptoms on/off since 12/03), pins & needles ARE NOT symptoms of ALS. Also, faciculations "all over" are again, NOT symptoms. My muscles have been twitching for the past 2 years, and my nerve conduction studies and EEGs have all been fine. I have recently been tested for MG, and as a result, my ANA levels have come back HIGH (1280), which points to a auto-immune disorder such as lupus. With auto-immune diseases, there are 100's of strange symptoms, which include all of the ones you described above. And again, what I have read about ALS, what you have described does not seem to fit. Maybe discuss the possibility of an EEG and/or NCS to check your nerves. good luck.

PeggyMc904 11-14-2006 06:24 PM

Re: Could this be ALS?
 
I know exactly how frantic you are. I have symptoms of weakness in arms and legs, and weird cramps that come out of nowhere. I saw a Neurologist. He did Nerve conduction tests and told me that I have Nerve Damge in arms and legs, and signs were Lou Gherig's or ALS. He asked for 2 weeks to "study" my case. After this, He wanted 4 more weeks to "study". That is when my Daughter, a R.N., stepped in and said No Way. For 2 weeks my family was in grief. I got a new Neurologist to take my case. He put ALS on the back burner (His Words), until He ran some other tests. ALS has all but been ruled out. I do have some form of Muscular Disease, still not fully diagnosed. I am weak in my arms and especially my legs. Had many falls. Walk with a cane, now. However, I am at peace, knowing that all is being done to try and make a true diagnosis, without throwing out a death sentence before persuing all avenues.
Please get a second or third opinion, and I wish you all the best.

metaroc 01-17-2007 07:05 PM

Re: Could this be ALS?
 
IT may be be but ALS is hard to diagnose, its a process of elimination... all other diseases are ruled out first, its very frustrating... hope for the best...


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