Starting to worry...

[CONCERNEDNURSE]

Hello. I am a 37 year old female. My symptoms stated about 10 months ago. I started having fasciculations in my left eyelid that occurred daily. 3 months ago I noticed the grip in my left hand was weak. My left thumb is now significantly weaker than my right and I frequently drop things if I use my left hand. I now have fasciculations in both my legs, my abdomen and my face every day. The fasciculations wake me at night. For the last couple of weeks my children and their friends have laughed after I have said something and asked "why are you talking like that". It sometimes feels like I can't speak clearly and sounds muffled or slurred. I have seen my GP and he has done lots of labs which all came back normal except for a positive ana. More normal labs after that followed by an MRI of brain, which only showed a few non-specific white spots, negative for MS. I see neuro in a week. If anyone could share an opinion I would appreciate it. Thanks for your help.

 

[cheerleader]

Wait for the neuro- ALS is a disease of elimination, with an EMG being the definitive test. It took us 2 years to finally get this diagnosed!

 

[gooseberry]

I know it is very ehard but it takes quite awhile for all the labs, scans, appointments, referrals, neurology tests to be done. You want to make sure that whatever path you go down, get a second opinion by a neurologist that specializes in that area

 

[AfraidButNotAlone]

May God bless you and keep you close to Him.

 

[CONCERNEDNURSE]

Thank you for taking the time to respond. I will try to be more patient and let the doctors figure this out. I've just become a little more nervous with each new symptom. I will keep you in my prayers.

 

[skipper66]

May God bless you and keep you close to him.

 

[MaxEidswick]

make sure it is an ALS experienced neuro -- most are not! if not cancel the appt, contact the alsa/mda and find one.

My first neuro-quack assured wrist surgery would fix everything :-(.

look up Stanley Appel.

-----
Max - Tuesday, September 30, 2014 4:45:54 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[Mediasmart]

Go the Ophthalmology Dept. at UK as they have a very good neuro team...the eye stuff is NOT ALS. Also do what everyone is telling you. I was with a hand doc for surgery at first and my neuro was NOT a quack...she just wanted that done to rule it out...

 

[bmartinez]

YES YES AND YES. What everyone said. Waiting is the absolute hardest part. Much like this disease, there's nothing that anyone around you can do to help it's progression; which means the same for your situation, there's nothing you can do by 'hurry up and wait'. Being that I was just recently diagnosed, I feel your pain. Hopefully it's nothing.

 

[Kim C]

I'm in Nicholasville too. I have had facis since June. Scared to death. Going to UK later this month for another opinion as my EMG was "not perfect, but not diagnostic either". I don't have any weakness. Fasiculations can be caused by stress, anxiety, lots of things so hopefully that will be the case for you. I will be praying for you as I completely understand how worried you are.

 

[CONCERNEDNURSE]

Thank you so much to those of you who took the time to answer my, probably silly, questions. I am a nurse, but have no experience with anything neuro. Since I last posted, just a few days ago, my thumb is far more weakened. My index finger on same hand now affected as well. I can hardly use either of them. My voice is changing. Is that common? Not just slurred but multiple times during the day will change in pitch mid-sentence. Again, I appreciate your help.

 

[CONCERNEDNURSE]

Thank you so much to those of you who took the time to answer my, probably silly, questions. I am a nurse, but have no experience with anything neuro. Since I last posted, just a few days ago, my thumb is far more weakened. My index finger on same hand now affected as well. I can hardly use either of them. My voice is changing. Is that common? Not just slurred but multiple times during the day will change in pitch mid-sentence. Again, I appreciate your help.

 

[affected]

please stop posting now and wait for your appointments. I don't mean to sound harsh but as a nurse you should understand that.

If you think your symptoms are worsening, get straight back to your doctor and have it checked.

I think the most common advice we always give to everyone here is to go to doctors ...

All the best with sorting your health issues out

 

[skipper66]

I agree with Tillie.

 

[CONCERNEDNURSE]

I apologize and will not post anymore. New problems causing difficulty at work and can't discuss with anyone so out of frustration I posted.