Update on me

[TomR1972]

First off I don't post much do to the fact that I would probably be too negative and don't need to put that on all of you. You guys/gals are amazing, very much admire your courage!

I was told about 3 months ago from a Stanford Neuro who specialized in ALS that he is 99.9% sure I don't have it. But all he gave me was an in office exam and looked at my only 1/2 done emg by a regular neuro. Mind you a neuro that he knows and says is a great Dr. However it was his assistant that did the EMG/NCV and even she couldn't get the noise on the machine to go away in my bad leg. However the results still stated normal, not sure how that can be possible.

Anyhow about a month ago I noticed I was getting a bit tongue tied. My tongue feels like it aches, burns, hurts. My jaw feels the same way. I don't wake up with this too much and it gets worse the more I swallow or talk. My tongue quivers very very little in my mouth at rest but it was doing that during my in office exam at stanford and they made no issue of it.

I go back next week I believe and will go through and extensive EMG/NCV with them shortly thereafter I hope. I believe I will be diagnosed with ALS. The only saving grace I have is this:

The aches and pains I had in other parts ---left shoulder to thumb, right leg, thumb and index finger, were very bad at times and now I would say if not for the speech/tongue throat issues I'd be at about 97%. I have had different things pop up and nearly go away but are somewhat always around just wax and wane with an overall better trend. Yet more things alway appear. I don't thing ALS acts in this manner but then when you read one publication and compare with the actual ALS community there are differences. I can only hope to god I have MG instead of ALS at this point but the painfull tongue and jaw never comes up in a search for MG. I have read of people with those symptoms but its always ALS. I may be part of this group very soon.

Thanks,

Tom R

[vmd]

Thanks for the update. I would concentrate on the 99.9% guarantee given to you by the Stanford neuro-that's not bad.

[TomR1972]

I wish I could but once you have tongue/speech issues you are almost coming to a dead end from what I can tell. I hope I am wrong!

[siuska]

an expert saying to you that he does not think you have ALS is what you need to concentrate on...stress can do a lot to your body including closing up the throat and choking...hold the more positive thought and banish the others...after all, what do you have to lose??? if you do have it( i certainly hope not!) your worrying will not cure it and if you don't have it( this is what i hope for you) then, you have wasted part of your precious life with unneeded worry.
Go about your day and everytime that cursed angst hits you ask it to take a 'back seat' and you will deal with it later. Then, thank the Universe for your ABUNDANT health...this takes practice, but practicing it will banish those negative thoughts...i am working at this practice too right along with you!

[mamaoftwo]

MG does cause tongue/throat problems - perhaps not pain but then ALS isnt supposed to be associated with pain either, certainly not in the early stages. Cramps are obviously painful but this isnt the kind of pain you are referring to.
Also, don't lose hope that it could be something else. Jamie has problems with his tongue and gets tongue-tied, has tongue fasics, has atrophy (lasagne tongue as I think he once called it) - but he does not have ALS. Doc thinks he has Lyme and that is what he is being treated for. Aside from me and Jamie, I don't know of anyone else here who has tongue pain. I even posted about this recently in the PBP forum. No answers so far. Hang on to the negative EMG and hopefully, they will find somehting else. Remember also that some people (like Cindy) never get a diagnosis and just go on with their lives despite the symptoms. HTH. :)
PS. How is your wife handling all this? It is tough in this stage when we worry but the neuros have said "no ALS". I can relate, so can Jamie.

[TomR1972]

Mama my wife is doing ok, all I talk about is it has to be ALS or that this symptom doesnt make sense for ALS. I am driving her nuts with my constant talk of this but there truly really isn't a second that goes by in which my mind is not focused on feeling like shxx. I was much worse with "perceived weakness" which lasted for about 2 months. Went from being in both legs to just one, never completely moved from the one leg but it is much better. But maybe that was just a precursor to actual ALS I dont know. All I know is that there are a bunch of truly great people on this site. I wish I could snap my finger cure all of you and have a big party at my house! It was hard to get married my entire thoughts were on how long am I going to be around, she doesn't deserve this etc etc. She is soo good but doesn't want to hear about it until there is something substantial to go on. Doesn't mean she doesnt want to listen, just doesnt want to be negative all of time which I tend to be really well versed in. I am in purchasing, I learn to understand that nothing goes right!!!!

[Jamiet]

Tom,

My wife is exactly the same, thinks exactly the same thing. I think they just don't want to even possess the fact that their hubby could be sick. I do my best not to mention it to my wife now, she once told me..."what do you want me to think, that you have a terminal disease?".... Well, that summed up what was in her mind....really, she's scared to death, don't want to admit it and as long as in her mind, your not dx, then your OK.

In the meantime, we suffer. I feel like ShXX. Really bad. I am in so much pain, it's almost unbearable. This guy here from Tampa described the pain i have to a "T", down the spine. The worst is just above my "rear end" on the spine. Last night, i slept on a heating pad, had to pull myself out of bed, then had to eat pain medication just to get to work. That my friends, is not normal....but who is normal these days right. Normal was back in the 80's..at least for me...(Sorry to you ole geezers here...LOL). That was the good ole days, not much worry, no money, good music, everybody happy....

Nowa days....everything is much much too fast. LIfe is too fast.

rgds,

jamie

[mamaoftwo]

Jamie - I have pain too but not like you describe. I havent read of one other PAL with pain at this level. Has anyone else? Neuros are always repeating that - no pain with ALS. I am hoping that Lyme will just be confirmed on 20th. Maybe you had it so long and because its in your CNS, it will take FOREVER to clear.

[TomR1972]

Jamie i so wish you get better, i keep wondering what your status is. Our wives could be best friends from the sounds of it!!!
I don't have pain as bad as you but you also started a bit sooner than me. Any new Dr. appts jamie?

Mama, ugh where do I go from here? I just hope i continue to show negative even if I feel like crap. Won't stop my mind but maybe it will prove that I am a slow progressor, who knows?!?!

[Jamiet]

i go to a local neuro Feb 20th. My ALS assn friend could get me an appt. at Baylor with Dr. Harati within a week, but i am off to attempt to snow ski at the EOM. I don't want to spoil a vacation.

Somehow, now, i don't want any type of dx. Before i wanted one, but the longer this goes, the longer i have left, wether it be terminal or not.

Rgds,

jamie

[mamaoftwo]

I feel like Jamie now. And like Cindy I guess. This all started for me more than 18mths ago. I am tired. Tired of all the docs, the tests, the poking and prodding and of feeling so unwell. On the one hand I feel blessed to have made it this far without a diagnosis. On the other, I think that I need to know so I can plan for the future.
Tom, where do you go from here.? Well, you can do as Jamie and I did relentlessly in the beginning - for the first year or so - endless tests and doctors. Or you can just hang in there, hope and if things get much much worse, then head back to the doctors office and try again.
Jamie - glad you are getting in a vacation but am astonished that your legs will hold up to ski-ing! Good for you.

[mammaberger]

Jamie good for you that you can go skiing, by now if it was als you would not be able to ski. I'm jealous, my little legs would probably get me half the way down and I'd have to roll the rest of the way down. Let's hope for you it's lymes that does not turn into als!

[pldo]

Wow- I have pain in my tongue and it as almost as if I can point to where it starts hurting and causes painful swallowing. Many of my other symptoms come and go. I went to the GP and she said it was related to my acid reflux and that we needed to exp. with other medicines. I feel like poop too and i have stopped bringing it up to my husband who is scared of losing me. Trying just to enjoy my daughter

[northerngirl]

Difference is my mom has ALS so I figured I was doomed. MY tongue is weird too I would have to say sore. Even swollen. I feel like I would not be able to talk right if I did (But I can). Swallowing is not right. Numb sore arms, numb index finger. The big thing for me is it's been 8 weeks and some of the stress of knowing, or thinking or believing I have it has calmed down. Could be the perscription drug the doc put me on. I do know that stress can cause lots of throat and swallowing issues. Acid reflux is very common with your symptoms and you don't always have heart burn. Let me give you a little friendly advice stop googleing, I already did that for you :wink:, and try and relax a little! You are going to end up with an ulcer. Go do something really nice with your wife, not because you think something terrible might be happening to you but because, you can. Enjoy it don't stress too much over the test because they just strike stuff off the list. Could be something as simply as your thyroid. And you are right the folks on this forum are amazing. Read “my latest abstract” by quadbliss, mike. On the first page. Check out some of his link. That man is amazing.
I go for EMG April 8th how is that for a sit, wait and wondertime LOL! Truth is I could have got in two weeks earlier but I am going away with my kids for spring break. My neuro is gone the month of Febuary. Any way I am going to be fine and so are you!
so hang in there!

Keep us up to date I am watching for you!
Laurie

[siuska]

Tom,
you and i will both get our EMG results this week...i hope we both get good news...it's good you are out skiing...that you are not weak in the legs...AND out ENJOYING Life!!! Let us know how you did...
S

[Jamiet]

You aren't dx either, right?

[pldo]

No not dx- just know not als because no emg abnormalities

[TomR1972]

Got back from my appt at Stanford and he stilll thinks even with my tongue issues that it isnt als. He said there is a lot of benign stuff that he encounters that there just isn't an answer for. He said again 99% sure that it isn't als especially after having symptoms for nearly a year and he said that after seeing him specifically 3 months apart he would see more issues. I guess my tongue function in his test is fine, my muscle tone is fine(i dont agree) I walk and move fine and he didn't note a postive babinski or hyper reflexes.

Regardless he will give me a emg test and wanted to do an evoke potential test that tests the nerves from the bottom of my feet to my brain to detect any other issues I suppose?

What do ya'll think? At this point I don't even feel better really coming out with good news cause I am not myself. But I keeep telling myself this has got to be good news as this is a top neuro/als dr.

[Al]

I'm no Neuro Tom and have told you before. Don't think you have ALS. Maybe some weird virus or condition but not ALS.
AL.

[TomR1972]

I hope I don't and I hate saying that on here knowing others are suffering. Just kills me trying to find out why I am not who I once was. Wow that was a mouthfull.

I brought to his attention my concern on my last and only emg with a local neuro. The DR. made a statement that my right leg was causing noise and I needed to relax. Then she asked if I had back problems which I really dont and didnt at that time. I had concern that this could be an als sign that was missed. The Stanford Dr said that you can have tight muscles that cause that and you can tell as such when administring the test.

Al, how are you doing? I hope you are kicking this disease rear end. You and Cindy keep this site goin good, I and others really appreciate the dedication.

Tom

[Marjorie R. Wilcox]

I am always unsure of where and how I am supposed to speak, as all this is new to me. Forgive me if I talk in the wrong place..... My husband Rick hasn't ever had any pain with ALS. His blood test and EMG show motor neuron disease. He has twitches in his legs in the evenings... he has muscle deterioration in his legs. He staggers when he walks. He has excessive loose congestion in his head every morning. He cannot get up from a low chair or toilet without the use of his hands, and sometimes still cannot get up. He coughs if he laughs. He makes little clicking sounds in his throat sometimes.... but he never has had any pain. In fact, when he was in an explosion that took part of his leg, he has had relatively no pain. He has had five surgeries on that leg to save it (bone grafts) and has had a few minor surgeries without any anesthesia and feels no pain. I consider it a blessing that he has ALS and that's probably the reason he has no pain. The doctors say that no pain is bad. They don't know how I would suffer if I saw Rick suffer. He is a special person. He is HAPPY with his life.... our marriage and all we enjoy together. Rick was given one prescription back in July when the explosion happened. The Percoset (SP) has been sitting on the counter with only 2 pills taken from it. He only takes extra strength Tylenol once in a while. I have no idea why he is pain free, but I thank God daily. My wishes for blessing to you all. ........and one other comment. I knew a person with Parkinson's who could be given no more hope of survival and was taken off all food... and I think water. He lived 3 weeks. His wife nearly had a nervous breakdown. She opposed the decision but the children overrode her. Marjorie

[TomR1972]

Hmmm a new wrinkle to my story.....i have had pain, weird sensation between my thumb and index finger on both hands. I have noticed on the top of my hand between those digits that my skin is extremely wrinkled giving that spot on my hand the appearance that I am a 90 year old. My wife sees it, neuro didn't spot it or chooses not to say anything until he has documented proof.

I am pretty sure I know what I got, just have to wait for the symptoms to progress and worsen. Maybe the new tests they have me scheduled for will show it. I have so much that is in line with als yet I keep being told otherwise. Maybe I have a problem conveying my symptoms correctly not sure. For some reason this neuro thinks that he would see a significant difference in me in 3 months time. From what I read on here that only happens 1/2 the time. However according to the neuro he is only wrong in like 1 out 50 cases based on in office exam. Furthermore with me having symptoms for a year I guess he feels very sure that I would have exhibited more in office symptoms.

I think I am a freak and will change his mind, or maybe he is just stubborn in his abilities and I am that 1 person he misses.

God I hate not knowing!!!!!

[mamaoftwo]

Tom, I have that same thing in my hands - it is where the muscle atrophies and leaves loose skin behind. But still I dont have a diagnosis either. I feel like you. Hang in there. If it is ALS as Cindy says, knowing now won't change the outcome.

[CindyM]

I was watching a special on American Pubic television last night about people with terminal illnesses and lots of physical and emotional pain. Seems that the patients who practice some sort of tension-reducing activity, like yoga or meditation, do better. The therapist being interviewed said it is a lot like watching how different people handle being stuck in traffic. Those who fret about the outcome end up with headache and worse. those who take a deep breath and try to relax do better.

"After all," she said, "the folks fretting about being late are not the only ones stuck in traffic. They just view it differently."