Newly diagnosed at 39

[Murphy24]

My husband was just diagnosed with Bulbar onset ALS this afternoon. He is 39 years old. He has had twitching in his left bicep non-stop since April 21. The twitching will sometimes occur in his right bicep, his triceps, forearms, knees and thighs as well. He started experiencing symptoms in his mouth as well. His speech is sometimes slurred. He feels like he has a lump in his throat. He says it is sometimes hard to get out entire sentences without swallowing (he says it is like trying to talk with a really cold mouth) He does not have any weakness. No tripping, chocking, dropping things etc. We went to a neurologist today. The neurologist did all of the strength tests which came out normal. The doctor said my husband was strong and did not have signs of clinical weakness. He did the EMG test. I am sorry, I am not up on all of the lingo yet and do not remember the name of the other test. They did the test with the electric shocks and then the needle test on the muscles. He tested his arms, hands, legs and back. The doctor came back and said the tests showed abnormalities in all of the areas. He said the tests are conclusive for an ALS diagnosis and there is no doubt in his mind that this is the correct diagnosis. He said that since my husband is experiencing the mouth symptoms as well that he would label it Bulbar onset ALS. He did not run any tests for any other diseases that may mimic ALS such as autoimmune, lymes, etc. We have not had an MRI or spinal tap but will be doing those, as well as blood work, as soon as possible. My question is this....has anyone been diagnosed with ALS only to find out later that is was some other disease?

 

[Atsugi]

I don't have an answer for you but one question: Is he a veteran? They help with ALS.

 

[Mediasmart]

My question is this....has anyone been diagnosed with ALS only to find out later that is was some other disease?

My observation is to expect the worst and hopefully be surprised. I'm a little amazed that the neuro doc went from A-F without passing BCD and E so for your own piece of mind and for that matter for your husband's and your mental health, get the other testing done and also get a second opinion from an ALS clinic.

There is no "good luck" to wish for nor to say to you in comfort. Full knowledge as to where you are and how this is going to play out won't change anything other than to take the "unknowns" off the plate.

 

[Dusty7]

Time for a second opinion.

The "other test" was probably a nerve conduction test, usually done at the same time as an EMG.

I am not a doctor, but I believe to conclusively have ALS, it must be proven you don't have anything else. ALS is a diagnosis of exclusion. There are many mimic diseases. ALS is a disease of widespread, acute and chronic denervation and that may be what your husband's EMG showed. (I don't know.) But there are other diseases that can also show widespread, acute and chronic denervation. They must be ruled out.

"My question is this....has anyone been diagnosed with ALS only to find out later that is was some other disease?" Yes, doctors make mistakes. I'm not saying yours did, but I would certainly get a second opinion from an ALS expert or major clinic.

 

[every90minutes]

This is exactly where I was 3 months ago. 36 almost the same symptoms except mine started a few months earlier with fatigue. I would suggest going to one of the top Docs like Dr. Appel in Houston, avoid Mayo, they are behind the times with ALS. Good luck but make sure they test for EVERYTHING else. This isn't something to not be pushy with your doctors with.

 

[Barbie]

Just for peace of mind, you should go to an ALS clinic for a 2nd opinion. if you look on the ALSA website, you will find a list of the best ALS centers. try to find one near you, because if it does turn out to be ALS you will want to continue visiting and travel becomes very difficult. I disagree with the advice to avoid Mayo--they are a very good organization and many pals go to Mayo around the country. My husband got his 2nd diagnosis at Mayo in Jacksonville, and they were not "behind the times".

I hope very much it is something else--do not give up hope.

 

[every90minutes]

Barbie I disagree about Mayo. They know a lot about EMG, but who on their staff is regarded as a top ALS doctor? If you have the opportunity to travel I think there are better options.

 

[MaxEidswick]

>Is he a veteran? They help with ALS

this one is very important.

> I would suggest going to one of the top Docs like Dr. Appel in Houston

getting a second opinion from the top kind should be number one on your priority; Amy Feldman is right across the street from you at U of M Hospital in Ann Arbor.

Kind regards,

Max

 

[Santa joe]

Please don't hesitate to get a second opinion. I believe it's an absolute must with ALS.

Debbie

 

[BK2011]

I agree with most of the folks, get a second opinion from an ALS clinic. Here is the link to the ALS Association Wisconsin's clinics: ALS Association Wisconsin Chapter: Fighting on Every Front to Improve Living with ALS. Looks like Wisconsin has an ALS Clinic in Milwaukee. If your husband is a vet there is a VA HOSPITAL in Milwaukee as well.

If he is a vet, ALS is presumed to be service connected and puts the vet at the 100% disability to start off with. That means a pension and more importantly medical care. That is really going to help you out. Granted I'd rather not have ALS and not need VA help but Sh.. Happens and I do have ALS; the VA has helped me and my family enormously. If he's not a vet I'd call the ALS Association and see what they can do to help.

The ALS Association Wisconsin Chapter
2505 North 124th Street, Suite #105
Brookfield, WI 53005

(262) 784-5257 Office
(414) 817-1541 Patient Services
(262) 784-5260 Fax

BK

 

[MaxEidswick]

> Happens and I do have ALS; the VA has helped me and my family enormously

me too contact the pva asap if you are a vet !

 

[Music67]

Time for a second opinion.

The "other test" was probably a nerve conduction test, usually done at the same time as an EMG.

I am not a doctor, but I believe to conclusively have ALS, it must be proven you don't have anything else. ALS is a diagnosis of exclusion. There are many mimic diseases. ALS is a disease of widespread, acute and chronic denervation and that may be what your husband's EMG showed. (I don't know.) But there are other diseases that can also show widespread, acute and chronic denervation. They must be ruled out.

"My question is this....has anyone been diagnosed with ALS only to find out later that is was some other disease?" Yes, doctors make mistakes. I'm not saying yours did, but I would certainly get a second opinion from an ALS expert or major clinic.

You should check the "MMN" section of this website. I think the first 4 postings I read were from people who are being treated (Ivig) for MMN but were first diagnosed as having ALS.

 

[SMP51]

we go to the Mayo in Jacksonville. They are quite on top of current ALS developments. We were part of the NP001 phase 2 drug study at the Mayo. Dr Boylin is head of the department and there was not one single question we asked that he was not on top of no matter how obscure it was. One visit I asked a question and he had just returned from Austraila were he had taken part in a huge ALS medical convention and part of the studies they were going over addressed what I was asking.

my point, get a second opinion, but pick a facility with a ALS clinic.... chose one closest to you, if it is a Mayo clinic you will be well taken care of too.

 

[adozi]

Dr Sorenson at Mayo is where i got my second opinion. It's really good because they can do all the tests in a day or two. Clinic introduction, blood and urine tests, pulmonary function, EMG/NCG, probably MRI, spinal tap, and whatever else can prove ALS (i don't remember now ), and a clinical follow up at which he tells you if you have it. It was the most efficient way to do it &it was busy but amazing to see. Dr. Sorenson at Rochester Mayo. Good luck!