Not me too!

[PDaddy]

I probably don't have ALS, but you folks are great in calming us down. Me; 53 years old, male, overweight, acid-reflux (take Zantac daily), but basically very healthy. About 6 years ago my left arm was getting tingly off and on, so I went to a Dr. and had an MRI and it was determined that I have some arthritis in my neck that could be pinching some nerves. I went to Physical Therapy for that which really did nothing. The tingly feeling in my lefty still happened off and on, but not too often so it wasn't really a problem.

About 2 months ago I noticed my left hand (I am right handed) starting to get noticeably weaker, then the fingers on my left hand started twitching slightly. Then the twitching became worse and worse, and now my right hand (fingers) are also twitching like crazy. My upper arm muscles are also noticeably twitching away. I feel more and more self-conscious in meetings at work where someone may notice my fingers or arms...

Also, I am very noticeably more emotional. I would NEVER cry at movies and now I tear up, and when something good happens my face tightens up under my lip/jaw and I can't talk for a few moments.

And sometimes my hands will cramp up if I get them in an odd location (behind my back or something) but they un-cramp quickly.

I don't see Dr.’s often, the last time was for my neck, and prior to that was 1992 when I sprained my ankle... My wife thinks my symptoms are all from my neck. So, ...

[Al]

I'd say your arthritis could be worse since 6 years ago. Probably wouldn't hurt to start there.
AL.

[Jamiet]

Need to start with a good doctor.

[PDaddy]

Thanks guys, I will try to make an appt soon, once I find a Dr... All the ones I've used to see have all retired! :oops:

[Al]

That could be a blessing in disguise. A fresh set of eyes looking at you is probably good.
AL.

[PDaddy]

Thanks Al, I am closer to seeing a doctor, or, actually finding one. I looked up one of my symptoms and it has a name, Emotional Incontinence. This is my worst symptom, I could live with twitching fingers, twitching arms, a weaker left hand, or occasional cramps in my fingers, but when every time something good or bad happens, my face or jaw tightens up and I can't speak, that sucks! I attend meetings at work, and this is a problem.

[Al]

Guess your wife likes that part. Can't speak. Sorry. Have a warped sense of humor sometimes. Looking up one symptom at a time will drive you crazy and you'll end up on 10 different forums. Better to use the time finding and seeing a good doctor.
AL.

[PDaddy]

Thanks Al, if my wife gets mad at me she will tell me joke after joke to shut me up! ;-)

[PDaddy]

Minor update - I finally had my GM doctor appointment yesterday and am scheduled for blood test, xray & MRI (for my neck), and Electromyography (EMG) and nerve conduction studies (NCS) with a Neuro specialist. I will see the GM again in 3 weeks, I'll report back then. Interesting to note is, my prescription for the Neuro also says "R/O ALS" - I assume that means to "rule out" ALS! But I am thinking more and more that my neck is getting worse from the arthritis, which is probably getting worse, which is causing all of these symptoms...

[PDaddy]

I finally saw a GM yesterday and he prescribed blood tests, x-ray, MRI, electromyography (EMG) and nerve conduction studies (NCS) with a Neurologist. On the slip for the Neurologist it said "R/O ALS" I assume that means to "rule out" ALS! I will see the GM again in 3 weeks, I will report back then.

[CindyM]

Good luck, PDaddy!

[PDaddy]

I'm back. I saw the neurologist today for the EMG and NCS, last Friday I had the MRI and XRAY. The Dr. said I have a bulging disc in my neck at T1 (effects the little finger and more) AND MND Motor Neuron Disease in my legs AND arms (but my legs are still strong!). So, he thinks it is (or could be?) ALS. He will get me into Loma Linda for "final" tests and put me on the drugs or trials. So, my wife is quite upset, she was with me during the appointment...

[mamaoftwo]

PDaddy, I was sorry to read this today. Best of luck with your follow up appointment/2nd opinion. You and your wife will find a ton of support with the good people here.

[PDaddy]

Thanks mama/2, I will post later...

[CindyM]

Hi Pdaddy. I am sorry they suspect ALS. No wonder your wife is upset! Maybe at some point she will join us. at any rate we wil be here for you both. Be sure to check back when you get the second opinion! Cindy

[PDaddy]

Well, tomorrow I see a specialist at Loma Linda. I am looking forward to seeing him and start some treatment or trials or whatever. This sucks. I will "graduate" to one of the other forums here after I see him. :neutral:

[CindyM]

We will keep your and your wife in our thoughts, PDaddy!

[LindaB]

PDaddy,
I have to say that emotional incontinence was my most fearful symptom too. Everything else, I could find a good excuse for. When my doctor first DX Maysthenia Gravis, I scoured the Internet trying to find out if Emotional Lability or incontinence could be a part of that. I could not find it anywhere except for ALS. I went back over family movies and found that early on in my symptons, I had the same reaction you have to a funny situation. I could not speak I have to say it terrified me. Now, my dread has come true and I am DX with ALS. I think about this a lot, that emotional incontinence was always there. I hope that the same will not be true for you, but I thought I should share my experience. Blessings to you, Linda

[PDaddy]

Thank you Linda and Cindy. I don't know if my 'face lockup' can be called Emotional Incontinence or what. But it is still happening or maybe even happing more often. The other day my wife and daughter were watching a chick flick and towards the end, I broke down and couldn't speak and I was crying. I never cry, before this.

And I am at work today but my arms are twitching so much I may go home early before someone notices. I haven't told management here about my initial prognosis, I will after tomorrow. It could be my Loma Linda appointment tomorrow is causing stress, but in my mind it will relieve stress...

[PDaddy]

I forgot to mention that my GP doctor prescribed Lexapro for my uber-emotioniability. I haven't started taking it yet, I want to see if the Loma Linda Dr agrees with the meds...

[hopingforcure]

P. I know for myself, the emotiona liability is really hard, I am a mess without a ssri like Paxil, or lexapro, or wellbrutrin. I cry if you look at me the wrong way, or even the right way for my son, I will cry because I will not be around for his life in my mind, so then I cry again. UGGGHH.. Good luck at the appt. Keep us posted, we all have been, were you are, we all get it, that is the thing with this forum, it is the only place that people get us...SO go ahead cry, we will cry with you..LOL..

[PDaddy]

Good grief, I started tearing up reading your post..

[hopingforcure]

You got the sense of humor part, and hey that is one of the biggest hurdles we have, so glad you found us. Write soon.. Hoping

[sharonca]

I've met the main dr at Loma Linda ALS clinic - Dr. Laura Nist. She seems very nice and up to date on info and treatment. She attended a support group at the hospital with several of her staff. When I get tired of the drive to UCLA I'm going to switch to LLUMC. Good luck with your appt. If you do "join" us in the worst sense of the word you might want to attend the monthly support group - great group of people.

Sharonca

[PDaddy]

Thanks Sharonca,

I did not meet Dr. Nist, but the doctor I met was great. I'll keep my doctor's name out of here for some reason. Should I list it?

Anyways, The Dr at LLUMC re-ran the NCS and and EMG and the other office tests (rubber hammer etc) and concluded I do indeed have ALS. He put me on Riluzole and Lithium right away, I will start today and he will watch my liver for a couple of weeks.

Now, I'm a PAL? :-?

[happy]

P. Daddy, I have been reading your posts over the months and wishing you the best...I read today and I am sad. I'm sorry. I will be praying for you and your family...

Robin

[sharonca]

Oh, I'm so sorry. I read your post and just busted out crying. Just so you know, Lithium has worked well for me. I am steady with a good blood level and check it every two to three weeks. I'm so happy they were able to give you prescriptions right away. If you are interested in the support group maybe I'll see you there. And no, I wouldn't necessarily list my doctors.

Sharonca

[rick/Wpg]

Hey P Daddy....so sorry to hear about the DX!
What a kick in the guts! It takes a while to get your breath after that!
Sounds like you are doing all you can do tho...and have good connections with the docs!
Our thoughts and prayers are with you and your family!
Rick

[PDaddy]

Thanks to you all. Our pharm didn't have the riluzole or lithium, time to call around.