Update on me

[Jamiet]

Pldo

You aren't diagnosed either, right?

 

[pldo]

No not diagnosed- 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]

Thanks Al!

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]

A new Wrinkle

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."