Old 07-17-2014, 01:55 PM #1 (permalink)
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Default Worried about MND plus Respiratory/Bulbar onset

Hi all,

My last thread was closed for some reason.

Anyway as you know I've had a bad leg since around October last year it started in the thigh with pain now I get pain in all of my left leg and twitching every day in the left knee, thigh and calf.

My Rheumatologist has ordered a spinal MRI, he tested my reflexes, balance and babinski and didn't notice anything untoward, he is the head of Rheumatology with a lot of experience although I didn't think a Rheumatologist was qualified to do such things?

I'm very concerned about my leg but also now very concerned about my breathing, yes I do have chronic asthma, Fibromyalgia and suspected mild copd by the looks of things but when I breath my neck, ribs and back hurt, this has been going on for around 6 weeks now and I'm worried that maybe MND has started in my leg and is now affecting my breathing or that it has started with the Repiratory part first?

I do have trouble getting words out quite a lot too and also I do choke quite a lot on food and drink, skme days I do some days I don't so I guess what I'm saying is I'm concerned that I may have the common fkrm of MND or maybe the Bulbar or Repiratory onset?

I'm in my early 30's, I had a Lung Function test on 29th June, this showed some obstruction, my FEV1 was 69, my FVC was 100 and my gas diffusion levels seemed normal too.

But as I've only had the rib pain when breathing for around 6 weeks would it have showed on the lung function test? I'm not sure what would indicate respiratory onsef on a pulmonary funtion test?

I hope someone can help, thanks.
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Old 07-17-2014, 02:00 PM #2 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

You got answers to all these questions in your previous thread. That is also why it was closed.

If you are worried about MND or something neurological, ask for a referral to a neurologist.
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Old 07-17-2014, 02:06 PM #3 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

Hi, I wasn't having breathing issues back then, also its not normal to have twitching in the left leg everyday is it?
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Old 07-17-2014, 04:06 PM #4 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

Honestly Guy, you have to leave this forum. No matter what new symptoms you think make you special we have told you that you do not have ALS symptoms.

You won't take NO from us.

You must seek and accept medical help. This is why your last thread was closed.

I will not answer any more of your comments or threads.
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Old 07-17-2014, 04:08 PM #5 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset



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Old 07-17-2014, 05:51 PM #6 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

I understand why you're annoyed but don't you think that the breathing issues, constant leg pain and twitches in the left leg and other issues are a big issue?
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Old 07-17-2014, 05:54 PM #7 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

>I understand why you're annoyed but don't you think that the breathing issues, constant leg pain and twitches in the left leg and other issues are a big issue?

-I think you are rude and thicker than a ****in' brick! pain != ALS .

GO AWAY.

Nikki can you ban this jerk?

the ever patient, gentle, and politic Max
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Old 07-17-2014, 06:05 PM #8 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

Banned? Why? Having constant rib and back pain and shortness of breath certainly sounds like Respiratory ALS to me.
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Old 07-17-2014, 06:16 PM #9 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

I do not feel the need to ban you Guy, unless your behavior changes or you persist. However I think you are barking up the wrong tree. Respiratory onset ALS is INCREDIBLY rare and in fact examples you may read of 2 supposed cases on forums ultimately turned out to be an elaborate fraud. And no,rib and back pain are not part of it and shortness of breath has a myriad of causes. Go to your physician and find out what it is but I am as sure that you do not have ALS as can be without actually seeing you.
A lot of us PALS are struggling right now. Please we have told you what we think. Believe us or not, I don't care but asking again is not going to change our opinion. Use your energy constructively and seek answers from your health care team

Last edited by Nikki J : 07-17-2014 at 06:49 PM
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Old 07-17-2014, 06:44 PM #10 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

Why do these guys keep coming back-damn but I'd give anything to trade with them. For those of us who really have it it gets kind of annoying after a while.
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Old 07-17-2014, 07:09 PM #11 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

Nikki is the most patient and tolerant admin I've ever known (and after 40 online years, that's a lot); however if Guy in Britain wanted to trade places with me to join you here, I suppose I'de let him
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Old 07-17-2014, 07:17 PM #12 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

A ww heck. There is very little humor sometimes and some fella arguing that he has a disease that will kill him is pretty darn novel entertainment.
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Old 07-17-2014, 07:49 PM #13 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

But why are there so many of them?
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Old 07-17-2014, 08:40 PM #14 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

Did you ever notice that whenever we have a long holiday they seem to disappear for a few days, hmmm, maybe we need more holidays
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Old 07-17-2014, 09:29 PM #15 (permalink)
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Default Re: Worried about MND plus Respiratory/Bulbar onset

Quote:
Originally Posted by Dusty7 View Post
But why are there so many of them?
Hey Dusty isn't it interesting (or boring really, but momentarily interesting) that there are more who come here screaming for us to tell them they are dying, than true PALS?

I honestly feel sorry for them, but that don't mean I'm going to play their game their way!

I agree, Nikki is the most amazing mod in the world. If only guys that come here could have any kind of comprehension of what she and other PALS are actually living they would self destruct with shame.

Mind you Beky is probably doing all kinds of amazing mod work in the background and we don't realise it. Three cheers for our amazing mods ... hip hip
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