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tmarino

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My six month follow up with my Neuro. is on Nove. 10th. About 15 months ago I noticed that an area on the right side of my tongue would twitch when I sucked on a straw cold or hot would hit it, chew on that side or making the sh sound. I went to web Md and typed tonue twitch and it came back ALS. I saw my GP who is a freind he finally sent me to a Neuro. after he found that I was concern. I know i can be a hypo the Neuro did a complete work up including an emg he said everything was normal. I didnot beleive him and went to a second opinion in January. I was so nevrvous that he said the in this extremely anxious individual with incomplete muscle relaxation frequently during the study the veracity of the findings may be in doubt. Both the first neuro and my GP said that i had to discount the second neuro finding Needless to say that I did not beleive them and i had to go to thehospital because my gp thought I was going to have a stroke. I stayed there for 4 days.

Since then i have had a complete physical and had seen the Neuro three times. This week i saw my GP who gve me my Flu shout and he said that imy tongue still looked normal and for me to get on with my life. I told him I was seeing the Nero and what questions I should ask him. I can not tell you what he said because we are in mixed company.

Can any one give me some questions to ask. I wish that I never had the albility to go on line. My Gp says that if I had Als I would not be walking after 15 months and I would have many more symptoms and would not have been able to paint my two storry home with a ladder. The same things that my Neuro would say when I came in each time he would see more symptons

So once again I would be thankful for any questions you think I should ask

Thank You
 

awieleba

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HI

I understand your concern but if after a year and half you are painting your house? I have NO diagnosed and I cant even hold my baby for too long due to weakness. A field trip of walking put my back into a spasm. I can no longer play tennis or work out, and that is in less than a year. I am not saying I have als, I dont know what I have but I do have weakness that was even verified by PT. I guess what I want you to take comfort in is that you DONT have weakness. I can handle everything expect that. So try to feel good about that. I could never hold my arms up to paint, My arm get tired holding a clothes up a store!

I wish you the best and things sound good to me, but I know how you feel.

april
 

brendapals

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Wow, I can't imagine a gp telling you only 15 months and not able to walk?
What is he/she thinking? Every one of us is different, I've now been diagnosed for 4.5 months, and I'm still working, walking, going to 2 college classes, going to 3 football games every week with my boys, just spent a week on the ocean with my family, walking a lot on the beach and everywhere else, I still do laundry, eat everything in sight, wash my car, caulk and paint baseboard when my hubby's knees won't let him do it any more, and work 4 days a week as a nurse in a rheumy office!
I certainly hope my gp, neuro, pulmo, rheumy would NEVER, EVER tell me I wouldn't be walking in 15 months.
Live life to the fullest, I hope all goes well with your visit in Nov. keep us posted,
Keep the faith,
brenda
 

Zaphoon

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tmarino,

I think you should relax. Like a previous post mentioned, if after 15 months you have had no weakness, rejoice! Weakness was the first thing that many of us on this forum experienced first.

Shucks! Why can't I walk up these stairs anymore? Shucks! Why has this baby become so heavy and why can't I rip open my packet of sugar? Thats true weakness, man, when a packet of sugar whips your butt! Have you been whipped by a packet of sugar lately?

Shucks, man! You just painted your 2 story house! I can't lift my arms above my head or walk up a ladder (not that I care to paint a 2 story house).

I'm trying to say what your physicians have been saying: "You are well!

If your neurologist is saying there is nothing to worry aobut, listen to him and relax. Your GP doesn't want to be made a fool of by referring you to someone he feels, in his best medical opinion, you need no referral to. If both GP and Neurologist are saying you are well, then you are well.

The only question I'd be asking if I were you is, "Why am I having such a hard time believing my physicians' good reports?"

I'm upset because packets of sugar are whipping my butt!

Zaphoon:x
 

awieleba

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Brenda

You go GIRL! I am impressed! You rock!

Zapoon

It is not funny but I had to laugh when you asked if he had been whipped by a pack of sugar!
 

jennibf

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Sugar :)

Questions for the neuro: well, I am going to answer this with what I have come up with in the past few weeks, thanks in large part to everyone here. My questions are going to be aimed at finding anything but ALS----so, more a list of my symptoms and I am not even going to mention ALS (thanks, Wright), hoping that ALS is the thing I NEVER have. I found this board googling my symptoms and I have to say there is NO way I could ever paint the front of the house. I would even prefer a cancer diagnosis over ALS. There is NO HOPE unless a cure is found, where ALS is concerned. The only hope would be a long, long, slowly progressing situation and that might even be torture. I just spent my uncle's final days at hospice with him and I would do anything to avoid that.


I wish I could paint my house. I need to badly, have all of the supplies but not one ounce of energy. I spent the morning cleaning my kitchen and baking for my daughter's birthday and my left leg is caving on me. Give me the most hopeful, most promising diagnosis and I will be a very happy woman!
 
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CindyM

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Now there's the attitude to have, Jen!:smile:
 

tmarino

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I would like to thank every one so far. Like most people the problem with my tongue has realy scared me.. No one can tell me wha is causing the twitch except that it is not als. In the back of my mind i think they might be wrong. As I said I went on line and it came up as ALS. I would like to know what questions I can ask that might help me put it to rest for once and for all.

Thank YOu
 

jennibf

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As has been stated on here many times, it's really a shame that when people do searches that the first thing the internet gives us is ALS. I had the same thing happen and it is SCARY but it's just the internet. So many twitches are benign (benign faciculation syndrome) and yet we fear the worst. The mind is a powerful thing but we have control over it.

I would not mention ALS to the neurologist. Go and tell them all of your symptoms, ask what you can do about them and let THEM (him/her) diagnose you.

As for questions, that's an individual thing but really, so much depends on your symptoms and what tests they choose to perform.

Keep us posted,

Jennifer
 

Zaphoon

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Jennifer,

I totally agree with you! The best thing for anybody to do on the first neuro visit is to be stupid regarding the neuro-muscular world of medicine. Using words like "fasciculations, spasticity, hyperreflexia, MND and ALS will not do you any favors. It is better to go in stupid and come out informed by the doctor.

All we need to do is present ourselves and our symptoms. It is that easy. The doctors are the ones who are to look for answers and sollutions to our medical problems. I know first hand that doctors do not like it when they have to compete with our own diagnosis.

Zaphoon
 

tmarino

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I am sorry that everyone thinks that this it is my first meeting. This is a six month follow up. I still have the same tongue problem as mentioned before. That is why I am asking for help on what questions I should be asking.

Again thank you for all of your help.
 

Loriliz

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Just my 2 cents.

If your tongue is interfering in your everyday life, ask the neuro to treat the symptoms. Instead of trying to find a "big picture" just concentrate on what you can do about the problem you have now and make it as "copeable" as you can.

Good luck
 
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