I waited the 3 months and now....

[pjm220]

Hello. I have no diagnosis, but many symptoms that are similar to ALS. My meeting with my neuro this week was very unsettling. It was our second appointment; the first one was 3 months ago. She told me that what I have is degenerative, there is no treatment, it isn't my muscles but maybe the muscles aren't getting the information that they need and she has no idea what it is.

Spasticity: what is it? Is it when my legs stiffen, either alone or when someone rubs my leg a certain way? Is it when I walk like Frankenstein? Does it come and go, or is it continual? Doc said I had no spasticity. But my legs get stiff, like cement, for short periods of time, in repetitive sequence.... usually when I am in bed at night and early in the am. Sometimes the stiffness goes into a spasm. Really stiff, so much that it almost hurts.

Muscle twitches under my skin: some can be seen, some not. She told me I didn't have them because she didn't see any on my face, and she looked for them. I have them all over my body now. Should they be always happening? She said they weren't happening because she didn't see any during the exam. My husband sees them all the time, on my face, legs, neck, back, thighs.....

I am now using a cane. If we go somewhere "out", I use a wheelchair so I don't get so tired. Drool has started to drip out of the corners of my mouth, because my lips are "soft". Talking is exhausting, and I sometimes choke on water or my saliva. Cigar smell and strong cooking smells have caused me to choke in the last 6 weeks, like I am breathing through my throat and it closes. I told the doctor, and she said that I still had a nose to breath out of, did I pass out?

Doctor wants to have a sphincter EMG done. I have yet to have an EMG at all. MRI, CT Scan, Neuropsychological, blood and chest x-ray all normal.

Is it me or the doctor? Is she right on?

Thanks for reading this. I appreciate any information that is offered.

 

[sharona]

where did you go to this doctor?In Chicago? what is her/his name? We live in Joliet il & had a simular experience in Chicago. God Bless
Sharon

 

[pjm220]

Yes, Chicago. Northwestern U Medical Group

 

[BrianD]

She told me that what I have is degenerative, there is no treatment, it isn't my muscles but maybe the muscles aren't getting the information that they need and she has no idea what it is.
...
Doctor wants to have a sphincter EMG done. I have yet to have an EMG at all. MRI, CT Scan, Neuropsychological, blood and chest x-ray all normal.

Is it me or the doctor? Is she right on?

It is time to get a new neurologist! I suggest contacting the Chicago ALS Association chapter to get the name of a neurologist that is competent in neuromuscular disorders. Here is the info:
Greater Chicago Chapter
220 West Huron
Suite 4003
Chicago, IL 60610
312-932-0000
[email protected]

If she says she has no idea... then how can she say it's not treatable?

An EMG sounds definitely warranted... but you surely don't start where she is indicating! I've never heard of that one before.

Brian

 

[Al]

I second the second opinion. I've never heard of a sphincter EMG. She had to be kidding or you misunderstood. I can not think of any reason to EMG your butt. Never heard of such a thing. You need another doctor.

AL.

 

[olly]

a butt emg? here's me thinking i've heard everything:roll:

 

[4mymom]

The EMG that my Mom had on her arms and legs were a huge help in diagnosing her. All of the aforementioned tests you spoke about came back "normal" for her, so there was that sense of not knowing for a long time.

I've never heard of the EMG test your doctor mentioned... I agree with the others that it's probably best to look for a new doctor who can be more helpful to you!

 

[Erica]

Anal sphincter EMG is commonly used in MSA(multiply system atrophy) and other neuro conditions.
Can you ask your doctor to include routine EMG of Limbs and paraspinal to be added to her order?

 

[charlottecorday]

that is what I call helpful advice, truly.I find somethings disdainful.....but where a priority is not even shown, why order a test. I have no insurance, because I had cancer and other health issues, making the cost of insurance 17k a year....I was charged 300$ for an EMG of one limb, two months later 1100$ for the exact same test by a different neuro and their diagnosed were differing. Please everyone, until you have one diagnosed from two neuros that don't know the other.....be patient, patient

 

[lydia]

I have also heard of the sphincter EMG (heard about it here!). I don't know in what situations it might be warranted, but I can't believe your neuro would recommend that particular invasive test without some kind of reasoning supporting it. But yikes, ask WHY THAT ONE, make neuro defend its worth, and then ask WHY NOT the EMGs of limbs. You definitely need those.

Pjm, you definitely have something going on and it is time for your neuron to pass the baton to a specialist. Good luck with your search,

Lydia

 

[Al]

Well I guess it's good to learn something new. Lydia can you find the link for the thread. I'd like to read it.

AL.

 

[lydia]

Hi Al,
The thread is on 8/22/08 by puzzled in Do I have ALS?, and Wright mentions it. I shouldn't have said I learned about it here, but more like I heard about it here. But when I was looking for the thread I ran across a posting in 2007 by CindyM saying her doctor wanted to get one, but no one commented on the yikes factor in that thread. So did you ever reach her?

 

[mare]

The breathing issue where you feel your "throat closes" could be a laryngospasm.
It is scary, but it can be helpful to close your mouth & breathe slowly & evenly through your nose. Perhaps that is what she was trying to say?
Although, could have been more empathetic and given some explanation!

 

[ktmj]

It's amazing where doctors find to stick something in the name of science.:-o

I've had a few I'd like to tell to shove it somewhere, and a few that had their head firmly implanted UP their sphincter.:shock:

 

[pjm220]

Hello, and thank you all for your posts. The doctor called me a couple days later and said that she had spoken with a colleague who had experience in my symptoms. The sphincter EMG was cancelled and I had an EMG yesterday by a specialist in motor neuron disorders. My doctor just called me and told me that they believe I have a degenerative motor neuron disease and I am being transferred to one of the 2 motor neuron specialists at the hospital medical center.

We have a path, and I am feeling pretty good about it. I am calling to make my appointment with the new doc as soon as I am finished with this.

The only thing I know about the EMG results is that my tongue was very abnormal and my weakest leg was somewhat abnormal.

That is in keeping with my speech problems showing up first last fall.

So, here we go, on the road to a diagnosis.... we hope. :?: