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Tanya

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My sil was told three weeks ago that she had ALS and put on the drug Rilutek. She was told to take for a month and then come back and they would test and see if she could become a member of a trial. She does not have an appointment for her second opinion until next month. She was recently told (not by a health care professional) that there is a disease out their that resembles ALS, but, isn't. She doesn't know what its called and I'm concerned she may go off her meds. Would an ALS clinic misdiagnos her and tell her that she has this disease without being certain. She had a whole battery of tests. How reliable are they. Any input on this would be greatly appreciated. Also, does anyone know what she could possibly be talking about (the other disease). We are so confused. Thanks Tany
 

rose

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Tany, I'm sorry your sister got this diagnosis. It is unlikely that she was mis-diagnosed, as there is strict criteria that needs to be met before a diagnosis is given.

Until enough tests are run (and it sounds like she had plenty, as she went to an ALS clinic) some diseases can seem similar. Myasthenia Gravis, Lyme's disease, and MMN (multifocal motor neuropathy). are a few. Sometimes Multiple Sclerosis, but it is not as similar in symptoms I don't believe.


Good luck to you and your family, and welcome.
 

Zaphoon

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Tany,

I'm really sorry to hear about your sister's diagnosis. I agree with Rose; its not likely that the ALS clinic has misdiagnosed. In fact, ALS is the last thing they look for. The diagnosis is given only after they have ruled out all else.

Zaphoon
 

Tanya

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Thanks for your quick reply. Its funny that you should mention MD, a sibling of hers has it. Her symptoms are slurred speech, weakness and coldness in her hands and her emotions are like a huge roller coaster. The clinic did an MRI and an EMG (I think that's what its called) and sent in many different people to talk to her about trachs, feeding tubes, wheel chairs, and gave her a gigantic spiral bound book to read (which she can't yet). Scared the hell out of her. I want everyone to know that since finding this forum, I have given it to her husband and daughter to read because of the great info and how well you have treated me. I have found alot of great info, and like it seems I always end my posts, I have to say you all are wonderful and appreciated. I still don't know how to offer my encouragment to anyone yet, all I can say is thank you. Tanya
 

Al

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No problem Tanya. We're all happy to help where we can.

AL.
 

Tanya

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I've been reading all sorts of posts about getting diagnosised and it seems that it is taking a long time to diagnose some people. My sil only started to show outward symptoms in the last 2-3 months. Big shocker for the whole family (thought she might have had a small stroke or something). Like I said, she is going for a second opinion in Nov. I guess what I want to know is if there really any chance that they would tell her this without knowing for sure. It really sucks being the realist in the family. It's not that part of me doesn't have the hope that what everyone is talking about now isn't true, but, I feel really guarded about this and have an inner feeling telling me that the docs in KC were right. I can't imagine them just telling her that she has this terrible disease if she doesn't and I want her to stay on her meds. It seems that the misdiagnosed people all finally get the news that they have ALS, not the other way around. Any input would be appreciated. Thanks Tanya
 

CindyM

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Hi Tanya- I am one of those rare folks who doctors suspected ALS at first, BUT-and here is the big caveat: it was only one local guy who convinced a couple or other local docs and none of them came out and promised it was ALS. They danced around it but finally admitted they were sending me to an ALS clinic for a second opinion.

The clinic said they don't know what I have. I keep forgetting that the ALS specialists also said they get 4-5 people every year who have ALS-type symptoms but nothing ever gets worse and nobody can ever DX what the patients have. (That's for all of us in limbo-land.)

Now, back to your SIL: I think if she went to an ALS specialists attached to major teaching hospital, they'd know for sure. But even if such a clinic said I had ALS, I'd want a second opinion form a similar clinic. I'd be like you, I'd want proof. Just don't get your hopes up too much, as these guys usually know what they are doing.

As for your second question: some patients are able to be DX'd relatively quickly. Just the nature of this confusing and maddening disease, I guess.
Hope this helps a little... Cindy
 

patricia1

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I worked the medical field for 30 years I wish I had a dime for everytime a doctor made a wrong Dx.

Iwould be rich LOL

Pat
 

malena

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Hi, my husband was diagnosed with MOTOR NEURONE DISEASE. The neuro didn t say ALS, and at the time I didn t know enough as to ask why he was using that term. A second doctor, ALS specialist in a big hospital, has said that ALS is possible, but not even probable. We have to wait. I really hope he was wrong, but as you see in our case the diagnose was premature, or maybe wrong. We will seek one more opinion, since we have two different ones.
The reason for the diagnosed was the results of the EMG.
 

rose

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Tanya, I read your original question to mean that you're concerned that your sister in law would go off of the Rilutek and therefore not qualify to be in any upcoming trials, and additionally that the suggestion the doctors could be wrong were coming from acquaintances that did not have a medical background.

I still believe that if she was diagnosed at a clinic that specializes in ALS, that they would not give such opinion unless she'd met the criteria (that is very stringent) for MND.

If she didn't go to an ALS clinic, then their opinion might have been hasty.

This isn't to say she shouldn't have another opinion. And, of course no one wants this awful disease, but please encourage her to stay on the Rilutek. This is the very reason I'm taking it ~ to qualify for future trials and studies. Its much better for her to go with what was given her, than to throw herself back into Limboland.

If her next doctor has doubts about the diagnosis given, and can find that she also could have another condition, then that will be wonderful news. The roller-coaster ride is a hard one though.

the best to you and your family. :)
 

Tanya

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She was diagnosised at ALS clinic at KU med in Kansas City. Like I said, she is going for second opinion at another clinic nearby in November. I will say that most of her symptoms are pretty textbook-slurred speech, weakness (can't squeeze a eyedrop bottle), leg cramps and balance is off, she kept falling rollerskating (which she loves) and she knew something was wrong. Plus like I said, her emotions are crazy (but who's wouldn't be). This really sucks because I am usually the one with a half full cup, but, I will admit the more I read...All we can do is keep our fingers crossed, Thanks everyone! Tanya
 

CindyM

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I wish her the best on this journey. Maybe the second opinion will give something more hopeful. Regards, Cindy
 

perplexed

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suggestion

Hi Tanya,
My heart is with you and your family, and I think they're lucky you're there to be their medical advocate. If you are seeking another opinion, Dr. Jeffrey Rothstein at Johns Hopkins has a good reputation (I read this from one of these forums but there is so much information you might not access it yourself) and Johns Hopkins itself is a major neurological diagnostic center. Also the Montreal Neurological Institute in Canada (where I live) is excellent. Having said that, to echo someone else on your thread, doctors do err. Think of that Olympic athlete with over 12 opinions some of which recommended amputation which it turned out was unnecessary.

All you can do is take it one step at a time and cry off by yourself in the bath.
LOL,
E.
 
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