A little nervous

[crue1965]

Hello all, my name is Scott, 48 year old male.

The reason I'm here is there is a possibility I have ALS...

A little history, about 8 months ago I noticed some weakness in my left hand, just put it off as "getting old"... The weakness contained to get worse so I finally decided to go to the doctor, to see what the cause could be. Since I've had an EMG, originally this was to rule out carpal tunnel per my doctor, no carpal tunnel but some abnormalities. Next was an MRI, no spinal damage, all looked good.

Next I had my doctor refer me to a different neurologist, after an physical exam, review of my EMG and MRI his conclusion is the possibly of ALS.

My next step is on Monday, heading to U of M hospital to check for ALS or Motor Neuron Disease.

Today my symptoms consist of the following: weakness in left hand and arm, cramping mainly in left hand, muscle spasms left hand, both arms, chest, stomach, and back.

Just wondering what your thought might be concerning my symptoms.

Thanks so much..

Scott

 

[ottawa girl]

I know it's stressful... This waiting business. We've all been through it. I understand UofM is top notch. Don't be surprised if they want to re-do the EMG. Most neuros prefer to do their own.

Good luck and let us know how it goes. Breathe deep in the meantime.

 

[crue1965]

Hi Elaine, you are absolutely correct.. They will be performing another EMG on Monday. Thanks for the encouraging words..

God bless

Scott

 

[mich5]

Scott - good luck Monday. U of M is a great place to go for some definitive answers. Take copies of all testing you've already had done. Maybe grab some movies to watch tomorrow to try to keep your mind off of it. I know it's hard. Good news is that it shouldn't be snowing here in Michigan on Monday. Good luck! Keep us posted.

 

[Dusty7]

Scott, as everyone on the site would say, good luck on Monday!
I think it's good that they are doing another EMG--the more the better (at the beginning). And I like having the neuro do the EMG, so he can expand the procedure as he sees the results immediately. Yes, take copies of all prior testing, but be sure to request copies of the new EMG and the technician or neuro's findings. And ask lots of questions. The NCS and EMG should tell your neuro whether this appears to be in the neurons or axons or is a demyelinating problem. What are your UMN signs? LMN signs? Are there signs of acute and chronic denervation? Is it symmetrical? Distal or proximal?
Too many times we don't think of the questions until we're out of the office. Even if you don't know exactly what you're asking, get your neuro talking and you may get answers to questions you didn't even know you had.
Also, there seem to be two types of neuros--one that likes to get the possibility of ALS out on the table as soon as possible, and the other that won't say ALS until they are CERTAIN. It's too early for your neuro to be certain, so I'd say he's the first type, which just means don't take him too seriously until he's done all the electrical tests, the blood tests, etc. There are a lot of other possibilities.
Good luck again!

 

[bigmark1954]

Scott....hope you don't end up being one of Jerry's Kids, like many of us here. I think you are headed in the right direction as far as a diagnosis.
The first neurologist that I went to was very highly rated in Salt Lake City....but I felt like he rushed my exams, even my EMG. He ended up not being able to diagnose me, and infact said that there was a 90% chance I did not have als. He referred me to the professor of neuromuscular disease at the University of Utah als clinc.
That new dr. put me through an exam lasting a full hour and told me he was 90% sure I had als, but would schedule me for another EMG in two weeks. He found fasciculation all over me(legs, arms, Hands, and feet).
My gut feeling is that you don't have als, if you do it is in the very beginning stages. Hows you voice, and do you have any balance issues, can you walk on your heels. Another thing is exaggerated reflexes ...like when he hits you with the liitle hammer in you kneecap, what happens. I actually kicked the doctor when he did that.
Good Luck...my diagnosis took a full four months, with all the testing and two doctors.

 

[zoohouse]

Hyper reflexes is most common in ALS but not always the case. My husband actually lost reflexes in his right knee, and then as the disease progressed had decreased reflexes with each area. Also difficulty swallowing or speaking is more common in upper motor primary, and not lower motor. Yes again UMN involvement is more frequent, but not always the case.
Scott, I pray that this turns out to be Multifocal Motor Neuropathy, which mimics ALS, but is not fatal and is treatable. It does tend to start in an upper limb and go from there, but has a positive AntiGM1 antibody, and there are F-wave blockages. It sounds like you will and are seeing really good doctors.
Paulette

 

[crue1965]

Hello all, thanks for the replies...

As far as swallowing goes there is no issue except when I try to clear my throat, any time I get a build up of phlegm and try and clear it it makes me gag... My gag reflex is much more sensitive...

Also I should add that there has been significant muscle loss in my left hand..

Balance issues? I've noticed a slight loss in balance, but again wrote this off as being clumsy..

Walking on heels I can perform this task...

So with this all this being said... I'm waiting and praying that all goes well tomorrow.. I did hear that University of Michigan has an excellent program.. Dr Feldman has done some great research with stem cell trans plats with favorable results, but first off I need a diagnosis... So tomorrow I will know something...

As far as my neurologist, he did not want to tell me it could be ALS, he stated there is something he had in mind but wanted to send me to another specialist, I point blank ask him if he thought it could be ALS.. He said yes... He also stated he has been wrong before and he certainly hopes he's wrong in this case... He stated he hopes I'm very mad at him next week and for an incorrect diagnosis...

Thanks again

Scott

 

[crue1965]

Thanks for the help and support...

A couple things, forgot to mention a significant amount of muscle loss in my left hand.. As far as balance no real loss of balance... No voice change, only issue with swallowing, when I have a build up of phlegm I have a very tough time clearing, any time this happens an I try and clear I gag really bad, my gag reflex seems much more sensitive...

My neurologist did not directly tell me he thought it could be ALS, he said he had something in mind but wanted to send me to U of M to someone with more expertise in this field, I point blank ask him if he thought it was ALS.... He said that's what he sees but he also said he's been wrong before and he hopes he's wrong in this case...

Just going to take thing as they come, try my best not to worry... Tough but not too much longer... I will know something tomorrow...

Thanks again

Scott

 

[Mediasmart]

Just hang on and wait for the doctor. It will help the honest up front communication to not appear fragile and ready to fall apart. ..not that u are...but as the saying goes, get it straight not sugar coated. Won't change things but will set things straight in your mind.

 

[Dusty7]

And I think it helps sometimes if you tell your neuro that you want the truth... not sugar coated

 

[bigmark1954]

And I think it helps sometimes if you tell your neuro that you want the truth... not sugar coated

I agree with that statement.....my first neurologist "sugar coated" pretty much everything, almost as if he was afraid to suggest ALS.
When I saw the doctor at the U of U ALS clinic...he didn't pull any punches, which seemed brutal at the time. I appreciated his more direct approach.