Old 04-06-2010, 07:14 PM #1 (permalink)
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Default What next? PLEASE HELP!

I am thinking about going to Mayo or the Cleveland Clinic. I feel like an experiment when I go to my neurologist. All she does is write down my symptoms and check my strength. I'm losing the ability to speak, I'm choking, I drool (new), I can't catch my breath, I'm dizzy, I fall, my left foot feels like a stump (new), my back hurts all the time, I lose my balance, I can't feel my right shoulder, my neck hurts like bones are out of place, etc etc. Nobody can tell me what comes next or how much I'm going to lose. I write down questions and symptoms and things that happen, but I don't get the answers, I walk out of the doctors office thinking, Is this it? Do I just wait for the next thing to go? My new job doesn't know what I'm going through, I've only been there a few months and I can't afford to lose it so I haven't told them. I know I can't lose my job but the minute they find out I'm sick, I become incapable and I'm in management. The hardest thing is I can't talk, and when I get upset I REALLY can't talk, sooner or later they're going to figure out something's wrong with me or they are going to accuse me of being an alchoholic because I sound drunk. I don't have anyone to talk to. Nobody really understands and I can't explain. I want to fix it, but I don't think that's going to be possible and I can't handle it.

That is the reason I feel like seeking a second opinion, but on the other hand, what's the point? Either I'm dying of a horrible debilitating disease in a couple of years, or I'll linger on a vegetable on life support can't hold up my head, can't eat, can't walk, can't talk which could go on for endless years, I can't live like that being trapped in a shell with only my brain, thinking and thinking and thinking but unable to communicate? Would I be kept alive for my family, or for the QUALITY of my life? How do you deal with this kind of information? Don't tell me to look on the bright side, because I don't see one. I cry all the time. How do you fight when you feel like giving up? Is it worth it to bother with a second opinion when all my symptoms match everyone else? Do you just wait around for the next thing to go, or do you try to find out another answer? Anybody's opinion matters to me, cause I have nobody else.
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Old 04-06-2010, 07:24 PM #2 (permalink)
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Default What next? PLEASE HELP!

I am thinking about going to Mayo or the Cleveland Clinic. I feel like an experiment when I go to my neurologist. All she does is write down my symptoms and check my strength. I'm losing the ability to speak, I'm choking, I drool (new), I can't catch my breath, I'm dizzy, I fall, my left foot feels like a stump (new), my back hurts all the time, I lose my balance, I can't feel my right shoulder, my neck hurts like bones are out of place, etc etc. Nobody can tell me what comes next or how much I'm going to lose. I write down questions and symptoms and things that happen, but I don't get the answers, I walk out of the doctors office thinking, Is this it? Do I just wait for the next thing to go? My new job doesn't know what I'm going through, I've only been there a few months and I can't afford to lose it so I haven't told them. I know I can't lose my job but the minute they find out I'm sick, I become incapable and I'm in management. The hardest thing is I can't talk, and when I get upset I REALLY can't talk, sooner or later they're going to figure out something's wrong with me or they are going to accuse me of being an alchoholic because I sound drunk. I don't have anyone to talk to. Nobody really understands and I can't explain. I want to fix it, but I don't think that's going to be possible and I can't handle it.

That is the reason I feel like seeking a second opinion, but on the other hand, what's the point? Either I'm dying of a horrible debilitating disease in a couple of years, or I'll linger on a vegetable on life support can't hold up my head, can't eat, can't walk, can't talk which could go on for endless years, I can't live like that being trapped in a shell with only my brain, thinking and thinking and thinking but unable to communicate? Would I be kept alive for my family, or for the QUALITY of my life? How do you deal with this kind of information? Don't tell me to look on the bright side, because I don't see one. I cry all the time. How do you fight when you feel like giving up? Is it worth it to bother with a second opinion when all my symptoms match everyone else? Do you just wait around for the next thing to go, or do you try to find out another answer? Anybody's opinion matters to me, cause I have nobody else.
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Old 04-06-2010, 07:37 PM #3 (permalink)
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Default Re: What next? PLEASE HELP!

Dear Smblaha,
I am so sorry you are dealing with these horrible health issues. It is absolutely worth going to the Mayo Clinic or Cleveland Clinic for a 2nd opinion. IF you do have ALS, you will be given information on how to LIVE with this disease. It is horrific...no sugar coating that. BUT, you CAN be in control of the QUALITY of your life, and right now knowledge is POWER. You don't say how old you are-only that you have nobody else...does that mean you have no spouse,siblings, friends...or noone you've confided in yet? If it's NOT ALS, then you can get some more medical guidance to help determine what you have and how to move forward with treatment.

You will meet Patients with ALS (PALS) on each end of the spectrum when it comes to how aggressive to be with medical intervention or not to be. That is a very personal decision- and there is NO WRONG one. They can give you very wise counsel and share their experiences to help you decide for YOU how to LIVE WITH ALS.

You have come to place where you will find a very loving, strong, courageous group of PALS and CALS (caregivers).

I will be adding you to my prayers, for courage and grace.
Peace,
Melody
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Old 04-06-2010, 08:11 PM #4 (permalink)
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Default Re: What next? PLEASE HELP!

Absolutely go to Mayo or Cleveland. I go to Mayo in Jacksonville Florida and they are very good at what they do.
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Old 04-06-2010, 08:16 PM #5 (permalink)
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Default Re: What next? PLEASE HELP!

Have you had a EMG test done? Your neuro should be run a EMG and MRI tests
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Old 04-06-2010, 08:18 PM #6 (permalink)
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Default Re: What next? PLEASE HELP!

Is there 2 of this thread...?
Here's what I posted a few minutes ago...

Dear Smblaha,
I am so sorry you are dealing with these horrible health issues. It is absolutely worth going to the Mayo Clinic or Cleveland Clinic for a 2nd opinion. IF you do have ALS, you will be given information on how to LIVE with this disease. It is horrific...no sugar coating that. BUT, you CAN be in control of the QUALITY of your life, and right now knowledge is POWER. You don't say how old you are-only that you have nobody else...does that mean you have no spouse,siblings, friends...or noone you've confided in yet? If it's NOT ALS, then you can get some more medical guidance to help determine what you have and how to move forward with treatment.

You will meet Patients with ALS (PALS) on each end of the spectrum when it comes to how aggressive to be with medical intervention or not to be. That is a very personal decision- and there is NO WRONG one. They can give you very wise counsel and share their experiences to help you decide for YOU how to LIVE WITH ALS.

You have come to place where you will find a very loving, strong, courageous group of PALS and CALS (caregivers).

I will be adding you to my prayers, for courage and grace.
Peace,
Melody
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Old 04-06-2010, 08:57 PM #7 (permalink)
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Default Re: What next? PLEASE HELP!

Your other post said you were diagnosed with PLS. When you got that DX, did they set you up at a clinic?
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Old 04-06-2010, 09:23 PM #8 (permalink)
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Default Re: What next? PLEASE HELP!

What kind of clinic? Nobody has done anything besides say it is PLS, or a slow progressing ALS. Isn't it the same except one lets you die quickly, the other makes you suffer till you die of something else?
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Old 04-06-2010, 09:28 PM #9 (permalink)
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Default Re: What next? PLEASE HELP!

In many cities, there are clinics specifically dedicated to ALS/PLS. If not, then you need to find a neurologist who specializes in MND (ALS, PLS and all the other variations) to educate you about how these diseases progress, and what your options are.

Check the ALS Association website and it will guide you to the nearest clinic to you.
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Old 04-07-2010, 01:33 PM #10 (permalink)
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Default Re: What next? PLEASE HELP!

hi smblaha.
as everyone has said a referal to mayo would be good or als clinic.
also get in touch with the alsa and mda,your gp or neuro should know were they are in your area.

as for your job,it would be illegal for them to dismiss you on account of your illness.
have a quiet word with your boss and explain your recent health problems,you need to be upfront instead of them finding out some other way.
i had been in my job for 6yrs before i got ill,i tried going back three times after serious disabling episodes before going on long term sick leave.
they asked me to write a resignation letter but i said no,i was hoping to be well enough to go back.
in the end i was made redundant after another company took us over,but i got all my redundancey payout because i was still an employee even after a year off work.

at some time you may have to give up your job,dont push yourself into a faster progression.
there are no certainties with mnd of any type,we have to get through each day at a time while living life to the fullest.

right now you need support,emotional ,medical and practical.
once you know were your at and got the support system in place you will feel better,honest.
you have the first one,emotional support right here
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Old 04-07-2010, 11:28 PM #11 (permalink)
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Default Re: What next? PLEASE HELP!

Go to a clinic by all means, call the ALS Association and the MDA. Make sure you keep up with the speech pathologist and other specialists. Those are all useful and productive, and will give you good advice. But also, realize that your life and progression are unique, and they aren't really part of it. MNDs speed up and slow down and plateau, and their best guess is informed but imperfect. I have been reclassified, my original diagnosis was HSP which was overly optimistic. Insidious progression became rapid, there was no way for them to know that would happen. I too am learning to live with bad swallowing, a head I can't hold up, etc. Having an untreatable, degenerative disease sucks. I had been diagnosed with something less disabling, this thing was quite a bad surprise. Our lives are constantly having to be rearranged around new losses. I am so sorry you have no confidant. There is a constant grief process when your body is crumbling beneath you, support and love makes a huge difference.

I think in a way doctor visits are very different for us. They are mostly monitoring, looking out for complications, as they cannot make us well. In betrays our common understanding, that doctor visits are in search of a cure. My friends and family intellectually understand this now, but emotionally they are disappointed that there is never good news.They get a diagnosis, a drug, a therapy. We get offered anti-depressants. Medical professionals can offer us advice or tools, but it is up to us to sift out what works, how to cope with our everyday lives.

What did you do before you became disabled, what was important to you, why did you value it? Living life now is harder, but those things are still what drive you, what you do now as best you can. Assistive tech is amazing. We live in an age where you can write with your eyes! There is still the same amount of meaning to your life as before PLS or ALS, only how you express it is different. You don't have to sit around and wait for your next loss, use whatever you have left. This forum is a font of ideas and suggestions. There is still sunny days to enjoy, albeit in a quieter manner.
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Old 04-18-2010, 09:54 PM #12 (permalink)
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Default Re: What next? PLEASE HELP!

DEFINITELY GO...GET ON THE MEDS TO HELP SLOW IT DOWN AND FOR DEPRESSION... If you are diagnosed..you can file for Disablilty and other means to help. I am so sorry... There is an ALS clinic in Chicago I believe... Look into that.. we went to the one in Miami to get tested.
Write the clinics for help
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Old 04-19-2010, 09:26 AM #13 (permalink)
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Default Re: What next? PLEASE HELP!

Have you actually had a diagnosed of ALS in December 2009, or is your neurologist still testing and watching your symptoms? Have you had an EMG, blood tests, etc. that have shown atrophy? There is weakness, not dizziness with ALS, that makes a person stagger. Muscles will visually diminish. Pain in your back and neck sounds like something else too. I am not a professional, but my guess is you don't have ALS.
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