Status
Not open for further replies.

nicty

New member
Joined
Oct 4, 2007
Messages
2
Reason
Learn about ALS
Country
CA
State
ontario
City
guelph
Hi there. It has been a very long time since l last posted, but I am a regular visitor and keep tabs on many of you, always hoping and praying for any good news. First let me give you an update. I am 41 yrs old and over the past two years my wrists have been getting progressively more painful, especially when I put weight on them. Additionally, I have been having wide-spread muscle twitching for about 2 years. About one year ago my Dr. referred me to a physical therapist who observed that I had mild atrophy in both hands especially the thenar area. Well, needless to say that when I Googled "hand atrophy" I found ALS and totally freaked out - this is when I first posted. Eventually I went back to my GP who referred me to a neurologist.

This guy was not an ALS specialist, but he was extremely thorough and works at a teaching/research hospital. He agreed with the PT that I may have some atrophy, but he said it is very difficult to tell when he's never seen me before. I had an MRI, tons of blood work including heavy metals and an NCV/EMG in March 2007. All came back normal - I was very relieved (and thankful!) as you can imagine. He actually said, "The good news is, you don't have ALS and you don't need to follow-up any further."

Since that time, however, my right hand seems to have developed more atrophy in the thenar area and between the index finger and thumb. It is slightly weak and painful in the lower thumb joint especially when I use it a lot. My wrists are more painful than ever (only when weight bearing) and I still have occasional twitching throughout my body. I do have to admit that over the past year I have been exercising my hands/wrists quite vigorously but over the past few months I have cut way back. (Maybe I have damaged my hands?). Also, the arch in my right foot has dropped and the big toe on my right foot is not really weak, but it does bend in all directions (weird!).

I just don't know where to go from here. I know if it is ALS I will eventually find out and I can worry about it then. However, I have two small children and there are times when I look at my hands and get so very anxious and scared. My husband is very supportive, but he simply refuses to acknowledge any change in the appearance of my hands. He keeps reminding me that I'm not getting any younger (so very true!).

I don't even know if it's worth trying to go for a follow-up with anyone. I guess I just wait and see?

Thanks for listening.

Nic
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
It does appear (for your peace of mind) as if you feel the need to be checked again by your neuro. My guess is that you are hesitant, because your neuro already told you that you didn't have ALS and you don't want to bring it up again. I think you should just go and be honest with him/her and reveal your fears. It's only human nature to think the worse, so I'm sure your neuro will understand. I don't think you have it and you probably don't really think you have it . . . but go get checked so you can stop worrying.
 

FootballNick

New member
Joined
Dec 17, 2007
Messages
9
Country
US
State
NJ
City
Morris
Nicty,

I've had pain in my hands (similar to a writers cramp) for about 5 months now, especially when I use them too much. I have other symptoms as well (Fasics, some arm weakness in my left) and am undiagnosed so far. My experience with neuro's has been spotty until recently. I've always been laid back with Doctors, and this experience has taught me to be more persistent. The first Neuro I visited performed a routine office check and declared me OK - scheduling an EMG and return visit in 4 months, which was not acceptible for me. The next Neuro after a 10 minute office visit - diagnosed me with BFS and told me that my problems were anxiety driven and prescribed me Xanex. I'm not sure what your healthcare options are - but on my third try I've found a thorough Neuro who has prescribed multiple tests and has experience with MND patients.

Note also that since my symptoms are not at the point where they are obvious (for example - I have no noticable atrophy) and the EMG did not pick up a Fasic....I've also made it a point to help the doctor understand what is going on a little better. For instance, I've brought in a heavy bag that I can lift a certain way with my right arm....but no longer can do so with my left...to demonstrate the type of weakness I am beginning to undertake.

I'm not sure if this helps you or not, but for me it gives me more comfort to know that the Doctor is on my side and willing to work with me.

Be persistent, ask questions and Good Luck
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Nic,
I would diffently go back to the nuero, maybe try a different one that speacilizes in nuero muscular diseases. your emg and bloodwork was almost was almost one year ago. alot of things can have the same symtoms as ALS. So don't get stuck on ALS , don't even bring it up to the dr, just tell him what is going on. I think you would have seen more symtoms in 2 years if it is ALS , but I am not a dr. You said you had an MRI was it of your head and cervical spine. It seems like whenever you google weakness ALS will appear, Which was probably the last thing from your mind. (I guess that's why drs can't stand us looking on the computer)
 
Status
Not open for further replies.
Top