Praying it's not true

[DebbieDWill]

Last Thursday, my 60 yr old husband (husband of 6 weeks, I should add!) was told by a neurologist that he has ALS. His only symptom is weakness in one hand which came on suddenly in June 2016. At that time, his PCP ordered an MRI and he was promptly sent to a neurosurgeon who diagnosed him with severe degenerative spondylosis, central canal stenosis and cervical myelopathy and he had cervical fusion of his spine. During subsequent physical therapy, the PT suggested he get an EMG. He has since had MRI of spine and brain which were clear and an EMG which was abnormal. However, no other tests (blood, urine, etc) have been done and he has regained some very slight movement in his fingers as well as slight improvement in muscle atrophy. He has been referred to an ALS specialist and we are waiting for an appt. Do you think it is possible to get a true diagnosis of ALS based on the info I have stated? Ate we just in denial? You folks understand how devastated we are. Any thoughts or advise is appreciated. Thanks.

 

[KimT]

In my opinion, only an ALS specialist can diagnose ALS, especially with limited testing. I wish I could say something to make you feel better so I'll try. "slight improvement" in movement and atrophy usually doesn't happen in ALS.

I DO understand how scared you both are. I'm praying it will be something else.

I hope you can get to the ALS specialist soon. I also hope the other doctors didn't diagnose him in their notes because you should increase life insurance and make other financial adjustments before getting a diagnosis, if possible.

I'm hoping and praying it is something else.

 

[DebbieDWill]

Thank you Kim.

 

[azgirl]

If it is true that there has been slight improvement in movement and less atrophy then that points away from ALS. You really need the neuromuscular specialist to help make that call. Hope your original diagnosis is wrong.

 

[lgelb]

Felicitations on your marriage, Debbie, come what may.

Others have said it -- a second opinion is always recommended and all the more if the condition has improved. Where are you going? Remember, the squeaky wheel matters so follow up if you don't get prompt action. You may also want to read the 2nd opinion sticky.

Best,
Laurie

 

[DebbieDWill]

We have been accepted at Duke ALS Center but they say they cannot see us till April. I called back yesterday and explained we need a second opinion and could not wait that long. No response yet but I talked to the folks at Wake Baptist in Winston Salem and they were super and said they will call me back this week. In the meantime we are seeing our PCP in the am and will ask him to advocate for us at Duke. We will see which works out first!

 

[Jocalyn8]

The clinic at Charlotte is quite good. Dr Brooks is there. 704-446-1900. They got me in pretty fast.
Cheers
Jocalyn

 

[swalker]

So sorry to welcome you here.

Congratulations on your wedding. I agree with the suggestion of others that you get a second opinion. Glad to see you are working on that.

This is an amazing place full of very helpful and caring people who can really relate to what you are going through. We are here with you.

Steve

 

[Lkaibel]

Our neuro considers the "relapsing remitting" pattern of Brian's symptoms sometimes something to keep an eye on, and he has a Dx of ALS confirmed by two specialists. So if any improvement at all makes HIS diagnosis potentially suspect, I imagine that goes double for your husband.

Best wishes at your specialist appointment.

 

[laurel]

Debbie my husband had a query of ALS from his neurologist back in 2007. We went to a unit that specialized in neuromuscular disorders to get a second opinion. He had a slew of tests, and then was given a trial of IVIG to gauge his response. He had good response (he had lost most use of his right hand with atrophy of the thenar plane). He was given the diagnosis of CIDP -MADSAM (a variant with motor symptoms that do mimic ALS) and he has been on IVIG monthly since 2007. Good luck!!