Old 09-05-2009, 02:08 PM #1
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Default Advise trying to get diagnosis please

I have read several stories here about getting a diagnosis. My husband's issues started a year ago, the first symptom that made him react was pain in his left shoulder, leading to loss of movement in his arm, since then he has muscle weakness, twitching, cramping.
We did not initially notice the extent of the muscle loss until we went to his endocronologist whom he has seen for 16 years, when he saw him without his shirt on he could not believe the muscle loss and was alarmed. We had been seeing a neuro for a year whom ran several mris and blood work everything normal. Cannot explain the pain and loss of use of now both arms. She has done 2 emgs which showed some fibs and facs, she had said she would think possible ALS if not for the pain, she said there is no pain with ALS. She has given him pain meds with no diagnosis. In the mean time he has gotten weaker, his calfs have gotten noticaebly smaller, fatigue and lots of twitching not a lot of cramping. We went to a new Neuro who did more blood work, all normal, he noticed fasics in tongue, he felt ALS was a possible diagnosis, he did an EMG which he said showed some signs that could be ALS. He referred us to a Specialist in NY, the visit was a hassle to get to, he examined my husband for 20 minutes, said he doesn't see fasics, and not sure about weakness because he didn't know him before. When showing him his flabby arms with very little muscle left he said it looks like that was caused by weight loss. (25 lbs in 3 months) We went to their EMG lab were we saw a fellow who did an EMG of Left side only and he said he saw no fasics and some delayed latency other than that normal. The advice of the specialist it to wait and see. However, the when we are home the fasics are crazy in shoulders, arms, legs, face. My husband can get around but is walking very slow and somewhat clumsy. All 3 Drs. mentioned that the pain has is unusual for ALS. My final question is should we go to another Dr. or just wait and see. Any advice would be appreciated
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Old 09-05-2009, 02:35 PM #2
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Default Re: Advise trying to get diagnosis please

Pammy ... I don't know enough about medicine to give you an intelligent answer on this, but the weight loss is very worrisome. Did the doctors comment on that? Is your husband eating normally? If he is eating well and the weight loss is from muscle atrophy, it sounds like this is something that needs more than a "wait and see." If he is losing weight from loss of appetite, I would think he would be losing fat, not muscle, but again, it's not a "wait and see" situation. You need to find out what could be causing the weight loss before he loses more.

Pain IS unusual for ALS, but if your husband has lost the use of his arms (!), has lost weight like that, etc., if it were me, I'd be looking for still another doctor. There are many, many other serious neuro problems that it might be. I can't believe a neuro said he "didn't know about weakness because he didn't know him before!" All neuros test for weakness, and can tell in an office visit if clinical weakness is present.

This is purely a personal opinion. I'd keep actively looking for an answer. Can you get to a specialty or university clinic? In the meantime, see if your husband will drink some nutritional supplements to keep his weight up.

Good luck. Please let us know what is happening.
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Old 09-05-2009, 03:06 PM #3
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Default Re: Advise trying to get diagnosis please

one thing I left out is he has brisk reflexes and positive babinski and the weight loss is not from loss of appetite or dieting, he spent years trying to lose weight by diet and exercise and never had weight loss like this. Now he cannot exercise like he could a year ago, a short walk is about all he can do now. When he does walk he spends the rest of the day with all muscles twitching and fatigue. BethU thanks for your input greatly appreciated.
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Old 09-05-2009, 03:12 PM #4
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Default Re: Advise trying to get diagnosis please

unfortunatelly your husband story sounds very close to my onset.
I started with severe pain in the R shoulder, upper arm, which later progressed to atrophy.
Then, fascics, weight loss( close to 40lb) and fatigue came along.
I went thru 3 or 4 neuro, and finally got diagnosed at ALS center. Now I'm developing same problems in my L shoulder. Pain is a symptom of ALS,tell your neuro to set aside her medical school textbook and read new info on ALS.
I suggest for you to look up an ALS (accredited) clinic, or go to Hopkins.
Should you have any additional questions, feel free to ask.
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Old 09-05-2009, 05:59 PM #5
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Default Re: Advise trying to get diagnosis please

You don't say what kind of specialist the NY doc is; some people say specialist meaning movement disorders. You really need an ALS specialist, associated with an ALS center/clinic.

Hopkins is great; if you don't want to travel that far, Penn in Philly is a little closer.
Dr. McCluskey is top doc- on the northeast corridor, you can't get better!
OK, I'm a little prejudice!

Check the alsa website for centers near you.
Good luck!
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Old 09-05-2009, 07:51 PM #6
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Default Re: Advise trying to get diagnosis please

Pammy, I'm sorry to hear about the problems your husband is having. I'm new to this site but I would echo everyone's feelings about not settling for the "wait and see" approach. The doctors should try to rule everything else out if they don't believe it to be ALS. Wishing the best for you and you family!

-John
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Old 09-05-2009, 07:58 PM #7
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Default Re: Advise trying to get diagnosis please

Thanks for the advice I really appreciate it, the Dr. is at Columbian Presbyterian, and you are right he is movement disorder, but has written books and started an ALS (Lou Gherig Clinic in NY) I will look on the site for an ALS specialist, right now the Dr. asked me to video tape the fasiculations and sent them to him. I did that this weekend.
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