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BethU

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Hi ... this is off-topic, but I've been sharing about my husband's neuro problems, which have been ongoing for many years. We just got back from the pain clinic ... and, thank heavens ... they were wonderful people. First thing they said reading his symptoms and history is "He needs to see a neuro immediately!" I told him he's scheduled with one for next week.

They said his original symptoms could indicate MS, and the fact that his MRIs were clean 30 years ago does not mean anything (and did not mean anything then, either), as many times MS does not show up on MRIs. They also said that his current symptoms could indicate an MS flare-up, but of course it will be up to a neuro to test and evaluate.

They also said the "break-through" pain med he has been taking for years is very weak and ineffective, and they prescribed something stronger. So he will be getting some relief I feel such relief myself, I can't tell you. Just the thought that he could get some treatment for something!

I realize I've got to start reading an MS forum, but that is really a crazy, complicated disease! I have no idea what people are talking about. So I'll have to learn ...

---------------Back to ALS-------------------------

On the other hand: I tried Mestinon again. Jumped through a few hoops to get my cardiologist to change my heart meds so I could take it, as I had had such good results the three times I had taken it earlier. (Taken it first for a week and a half in January, once for two months--March to May, and then recently to test it again for one day.) It produces immediate effects, so if it's going to work, you'll know within a few hours.

So I took it again yesterday ... and NOTHING! No energy, no increased strength, no nuttin. In fact, I was unusually exhausted all day. I don't think it was the placebo effect the first three times I took it. I think that whatever was happening with my ALS earlier this year just happened to respond to the muscle-junction effect of Mestinon, and that switch is now turned off.

Oh, well ... it was worth a try! The only good thing about it not working is that I really hate the side effects ... much more twitching and saliva. Yuk! Just what I don't need.

So ... it's plain old vanilla ALS for me. No fancy muscle-junction action.
Thanks for letting me vent!
BethU
 

rose

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Hi ... this is off-topic, but I've been sharing about my husband's neuro problems, which have been ongoing for many years. We just got back from the pain clinic ... and, thank heavens ... they were wonderful people. First thing they said reading his symptoms and history is "He needs to see a neuro immediately!" I told him he's scheduled with one for next week.

They said his original symptoms could indicate MS, and the fact that his MRIs were clean 30 years ago does not mean anything (and did not mean anything then, either), as many times MS does not show up on MRIs. They also said that his current symptoms could indicate an MS flare-up, but of course it will be up to a neuro to test and evaluate.

They also said the "break-through" pain med he has been taking for years is very weak and ineffective, and they prescribed something stronger. So he will be getting some relief I feel such relief myself, I can't tell you. Just the thought that he could get some treatment for something!

I realize I've got to start reading an MS forum, but that is really a crazy, complicated disease! I have no idea what people are talking about. So I'll have to learn ...

---------------Back to ALS-------------------------

On the other hand: I tried Mestinon again. Jumped through a few hoops to get my cardiologist to change my heart meds so I could take it, as I had had such good results the three times I had taken it earlier. (Taken it first for a week and a half in January, once for two months--March to May, and then recently to test it again for one day.) It produces immediate effects, so if it's going to work, you'll know within a few hours.

So I took it again yesterday ... and NOTHING! No energy, no increased strength, no nuttin. In fact, I was unusually exhausted all day. I don't think it was the placebo effect the first three times I took it. I think that whatever was happening with my ALS earlier this year just happened to respond to the muscle-junction effect of Mestinon, and that switch is now turned off.

Oh, well ... it was worth a try! The only good thing about it not working is that I really hate the side effects ... much more twitching and saliva. Yuk! Just what I don't need.

So ... it's plain old vanilla ALS for me. No fancy muscle-junction action.
Thanks for letting me vent!
BethU

Beth, you certainly had a full day! I know you've got to be disappointed that the Mestinon didn't do anything for you this time. However, maybe you will be a piece of the puzzle for someone somewhere studying cause and effect with ALS... And, for what its worth, if there's anyone that should have some exotic muscle junction stuff going on, its you! :)


I'm so glad that you may have found a more effective pain reliever for your hubby, and what a relief that the pain clinic people were nice. Oof course you've still got the wait and see game going on until you get him to a neuro, and then probably even more wait and see after his appointment! :-|

Its a lonely world that you've gotten yourself mixed up in, all of this neuro stuff. Just know that you've got some true friends here.
 

lovelily

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Hi Beth...Wow! You have a double whammy. a hubby that has been ill all his life, and all this trouble with you....:(

This is so much to deal with. It stinks that the medicine pooped out for you. To say "Oh well" is typed easily enough, but must be paining you inside.

Friends here understand.

I hope a fresh neurologist will bring light to your husband's dilemma, and something (diagnoses) will help him.....soon!

take care
lovelily
 

crystalkk

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Beth,

Do you think it could have been the new heart meds making you unusually tired. What is the new med you are taking? Your body could have been used to the old heart med. I know betablockers and ace-inhibitors can make you very tired.
 

brendapals

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Beth,
Bless your heart my dear!

My mother was diagnosed with MS when she was 52. I was 17 at the time, same age of my oldest son now, interesting, huh?

Anyway, she lived to be 77, almost 26 yrs with MS. The first 13 yrs, she was at home, getting around with a cane then a walker. She broke her ankle in 1990 and never walked again. After about 6 weeks at home, in a cast, my brothers and sister and I decided it would be best for her to go to the nursing home up the street for rehab.

The broken ankle never healed because she had very little muscle in the right ankle. She remained in the nursing home for 13 yrs. I have to say she never once complained, never required anything for pain in 25 plus yrs, she was definitely a strong woman! I hope I got that gene too!

You are so right that MS is a complicated disease, but I'm glad you feel you can vent here. I guess I just did a little , huh?

Thank goodness you got something stronger for your husband's pain, hopefully that will give you both some much needed rest.

Keep the faith,
talk to you soon,
brenda
 

BethU

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Thanks, Rose and Lovelilly and Brenda... I really appreciate the support!

Crystal, thanks, too. That's a good point! I hadn't made the switch yet on the heart meds. I normally take beta blockers 2x a day (and they do tire me out), but my new med is once a day, so I skipped the a.m. beta blocker and took Mestinon instead, planning to switch over that night. But when the Mestinon was a dud, I just resumed the Beta Blocker that night.

But I am going to mention at UCLA next week that I had those results. What was especially significant to me was that two out of the four times I tried it, I had clear (slight) improvement in the speed of my speech, as well as additional energy. The fact that it affected a bulbar symptom is worth noting, I think.

In the neuro's report from my first appt, she wrote that Mestinon had had no effect on me, which was clearly a misunderstanding.

The different results could also be a matter of dosage ... many people take really high dosages, but I have been very cautious. The second and third times, I only took half pills. You need to have an on-the-ball, pro-active neuro monitoring dosage if you increase it, as it's easy to overdose, and hard for a patient to tell when it's happening.

But ... it was worth a try. Darn! I didn't figure out The Cure for ALS after all!
Thanks again, guys,
BethU
 

CindyM

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Beth- I hope it is not MS but so glad to hear he got the pain meds yu wanted. Both of you deserve a little relief right about now! Cindy
 

BethU

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[QUOTE=CindyM;51837]Beth- I hope it is not MS but so glad to hear he got the pain meds yu wanted. Both of you deserve a little relief right about now! Cindy[/QUOTE]

Thanks so much, Cindy. I've been reading the MS Forum, and going "OMG, Paul's got that!" on many posts. Things he's been telling me for years that never seemed like a "symptom." I should have been listening to EXACTLY what he's been describing.

For instance, he has told me again and again that he can hear voices fine, but can't understand what people are saying. And I've just assumed he needs a better hearing aid again, and out we go to get him one. Turns out, not being able to understand spoken language can be a symptom of MS.

From now on ... I am going to listen to him and no assumptions! The big question is: Will the neuros listen?

Still got my fingers crossed for you, Cindy!
BethU
 

awieleba

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Hi beth!

You are such a strong women, does your husband know how lucky he is?

You have new researc with ms for him, that should keep you busy, like your not already. Why do we have to do so much research. That is what bothers me. I think that it is important to research what is going on with your self, but we should not have to figure out what we have! These docters do quite well for themselves!
I do admitt that this is a frustrating disease or any muscle disorder as they seem to effect people diffrently.

I am sorry to say that I wish my docter would tell me I had MS, at least there are some new meds for it. And if I know that I could be around for anther 20+ years even though I would have pain and not walk----I would take it at this point as my alternatives are better. As long as I can be with my family that is all I care about.

bless you beth,

april
 

BethU

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April, thank you so much for your reply (and for putting up a photo of that ADORABLE child).

I seem to be obsessed with these forums ... I have lots of projects I should be doing. but I can't get offline! I guess this is how I am processing the diagnosed, reading about how others are coping ...

I have been horrified reading the MS forum ! People there are in severe pain waiting years for diagnosed, just as we are! One post said there are more than 100 diseases that mimic MS. There surely are that many that mimic ALS, too.

How I wish we could all get "the word" good or bad, just so we KNOW and can put it behind us and make plans for the future, etc. After the first horrible shock of my diagnosed, I couldn't stand to see any friends or relatives for a couple weeks because I'd burst into tears just seeing their faces! But since then, I have been much more relaxed than before the diagnosed. When it is hanging over your head, it is the "not knowing" that drives you up the wall!

I am so hoping my husband gets a diagnosed, as there are treatments for MS, and he's had the pain and some of the symptoms for 30 years! I would SO LOVE for him to have some pain-free days before he dies. He is such a good guy, and has paid his dues (as haven't we all) ... WW2, Korea, etc. He says he can't remember what it feels like not to be in pain.

Bless you, and thanks again for your reply. I keep you in my prayers.
BethU
 

happy

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There's just no easy way to be sick no matter what the disease. Adjusting and reinventing your life is so stressful...i wish you and hubby the best Beth. You certainly deserve it.
 
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rose

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April, thank you so much for your reply (and for putting up a photo of that ADORABLE child).

I seem to be obsessed with these forums ... I have lots of projects I should be doing. but I can't get offline! I guess this is how I am processing the diagnosed, reading about how others are coping ...

I have been horrified reading the MS forum ! People there are in severe pain waiting years for diagnosed, just as we are! One post said there are more than 100 diseases that mimic MS. There surely are that many that mimic ALS, too.

How I wish we could all get "the word" good or bad, just so we KNOW and can put it behind us and make plans for the future, etc. After the first horrible shock of my diagnosed, I couldn't stand to see any friends or relatives for a couple weeks because I'd burst into tears just seeing their faces! But since then, I have been much more relaxed than before the diagnosed. When it is hanging over your head, it is the "not knowing" that drives you up the wall!

I am so hoping my husband gets a diagnosed, as there are treatments for MS, and he's had the pain and some of the symptoms for 30 years! I would SO LOVE for him to have some pain-free days before he dies. He is such a good guy, and has paid his dues (as haven't we all) ... WW2, Korea, etc. He says he can't remember what it feels like not to be in pain.

Bless you, and thanks again for your reply. I keep you in my prayers.
BethU

Beth, I think I wrote you this before, (but it bears repeating!) your profile picture of the two of you together speaks volumes. You two look like the relatives/ neighbors that I wish I had! There isn't a day goes by that I don't think of you often, and wonder how you're doing. Just know that you're not alone in this in the least! With as many time zones as we span, you always should have a friend just a message or post away....
(this is a smiley hug just for you! :arrow: ((:)))))
 
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