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KimT

Extremely helpful member
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Joined
Nov 18, 2014
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4,873
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I have hyperreflexia but I think I've had it for quite a few years, although it is much more pronounced. My lower EMG was abnormal. The neuro said it was probably just a lower back problem and did not elaborate. I have difficulty swallowing. I do have some other conditions (herniated disc in neck is one) but I've fallen twice in the past year. Tripped both times.

Two weeks ago I woke up with a pain (I know all the warnings ALS does not = pain). The pain was in my rib area near right breast. It hurt to breathe and move. It was an agonizing pain like I had broken ribs. MRI negative for rib. I was referred to pulmonary and my FVC was only 68.9. I'm 59 years old, normal weight, and pretty active considering my pain level from herniated disc. My oxygen saturation was normal at 98.5. It said my "lung age" was 84 because of the breathing test. It does hurt when I breathe in so I'm not sure if that had any effect on the test but it scared me because I thought I did well.

The neuro had ordered the swallow test two months ago but my insurance denied it.

Normal brain MRI so MS ruled out.

I do seem to have weakness. No Babinski reflex. Some tremors and spasms but non specific.

I'm so scared I don't know what to do.
 
Hi Kim,

seems you are seeing all the right kinds of specialists to try and address what is happening with you.

Your neuro says you have a lower back problem, and you pulmonologist seems to be working on lung problems.

I can understand that you are scared. The best thing to do now is to completely stop using the internet to try and be smarter than your doctors and diagnose yourself. They will be working methodically to find the source of your issues, whether it is a single source or more than one issue.

We can't really help unless you have actual ALS symptoms (which you haven't described), or have a diagnosis of ALS. I sincerely wish you all the best working with your doctors to solve your health problems.
 
I know some people that attend Jacksonville Mayo. They come from NYC to go to that facility because they like the quality of care so much. I think you will be in good hands. When is your appointment?

You have a lot of different things going on so try to be patient. I know it is so scary but your doctors need to be very methodical and work through the process.

Hugs, Steph
 
Hi Kim,
I'm sorry you are having any issues at all. But, it doesn't look like it's ALS from what I know about it. We aren't really qualified on anything more then that. I am so glad you are going to Mayo to get checked out. They will be able to find out what is going on. Best of luck to yo. Please try to be patient and let the Dr's figure out what is going on and not the internet. Kim
 
Gooseberry mentions the Mayo clinic at Jacksonville, FL. That is where my husband goes. Wonderful facility. It may be worth trying to see the ALS neuro there (Dr. Boylan), but You would need to be referred. Worth a try. God bless!
 
Been to Mayo twice. All the symptoms point to ALS and I had a dirty EMG. My arm is still throbbing from the needles. Just got back. Already saw two neuros there and have an appointment with Dr. Boylan on December 29th. I met with the ALS nurse who has a program there and she is going to try to get Dr. Boylan to see me earlier.
 
You'll be in good hands with Dr Boylan. He's the smartest man on the planet as far as I'm concerned.

Write down questions in advance. Ask the tough questions. He'll give you the time you need and will call in anyone you need as a consult.
 
I met with Boylan. He saw me early. He is not convinced it is ALS and will repeat the EMG in March.
 
Good luck to you Kim. I hope the get to the bottom of this soon. Wish there was something I could do to help. Hugs, Kim
 
Dr. Boylan actually said it was "premature" to confirm. He seemed irritated that the nurse wanted to give me some information about their outpatient program for ALS. As of today, I'm getting constant cramps in my calves (mostly left) and feet. My muscles seem to jerk and it's harder to type. My legs feel like jelly when I try to go up stairs. I'm not sure how I can wait until March for another EMG.
 
Try magnesium, tonic water or pickle juice for the cramps. Ask if there is anything they can do for your other symptoms. All the EMG will do is possibly clarify a diagnosis as you know
 
>He is not convinced it is ALS and will repeat the EMG in March

all good news! fingers-crossed!
 
I'm already on 1,200 mg of magnesium and also Valium for muscle spasms. I have a hard time with tonic water or pickle juice because I have very bad acid reflux.
 
Boylan would not diagnosed my husband when we were there last May. The wait and see was NOT what we wanted to hear at the time. However, ALS reveals itself when ready. 6 months later, diagnosed was officially changed by his local neuro. He just got his own Permobile 2 weeks ago. ALS association is coming to pick up the loaner chair tomorrow.
 
>Valium for muscle spasms

that is odd ... baclofen is more usual ...
 
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