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momofsixkids60

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Patty,

Mom thought be ni gn cra mp fa scic u la tion on page 1. Ian con fir med that was the first di ag no sis on po st 24. Hopefully that will be his final di ag no sis.
 

prattstar

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Toto, I have checked out the other site. I didn't initially feel particularly welcome as I was confused about my DX, I was told I was scaring them and that if I had s diagnosed for mnd (Which I do) than it wasn't the place for me.

I just have to hold tight until my next clinic and hope that this doesn't get worse.

I just hope now I am not dreaming up symptoms.

This is one incredibly difficult journey. The uncertainty is something else.

Again Thanks for your support.

Ian
 

prattstar

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At the very least, I am getting loads of hope from here and am getting wise to the type of questions I can ask my Neuro.

After the initial shock of DX I am now in a better position to ask logical informed questions of my Neuro.

Whatever it is, we as a family will have to deal with it.

I feel my fatigue is a lot to do with not eating properly and worry.

Slowly, I am dealing with my emotions and when I have my next clinic my mind should be more coherent.

Have been checking out Lots of other parts of this forum as suggested.

Warm regards
Ian
 

momofsixkids60

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Ian, check out the posts by nightwolf. He had frightened a few here since he was in itially di ag nosed with B F S. He just got his new di ag no sis. Interesting reading.
 

oscar1

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You seem like a very courageous man and I wish you well and am thinking about you
 

notme

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I'm all for this poster getting a second opinion....since Riz. Isn't prescribed for BFS, I kind of have my doubts that's the problem.

I'd most certainly seek a second opinion. The benign is throwing everyone off. No such thing as benign ALS, but that neuro must have found enough to support that drug, no?
 

prattstar

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Nightwolf
I read number of your posts to understand token condition. It is certainly something to ask about when I see my consultant next.

Notme
This is my second opinion.

The benign part is confusing everyone. I am speaking with another person who is under the same consultant as me and similar words were used.

I need an explanation and only my consultant can provide that.

I feel I am on top of this one minute then it is on top of me the next.

Still I will remain hopeful and Stories of so many on this board give me hope.

Ian
 

prattstar

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Nightwolf
I read number of your posts to understand token condition.
Ian

Sorry that should say your condition not token.

Are you allowed to edit a post. I don't seem to be able to?

Ian
 

momofsixkids60

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Ian, yes we are able to edit after a certain amount of posts. I believe it may be 20. If you have the ca pa bil i ties, you will have an edit button next to the reply quote button on the bottom right of your post. I also believe there is a time limit. You can also look at the bottom of the page by clicking on posting rules.

As for the quandry you are in, I would look for an M D A / M N D Clin ic in your area and get an a ppoint ment. If this doc tor is using im pro per me di cal terms, I would let my fingers quickly do the walking through said we b si te.
 

momofsixkids60

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Ian, yes we are able to edit after a certain amount of posts. I believe it may be 20. If you have the ca pa bil i ties, you will have an edit button next to the reply quote button on the bottom right of your post. I also believe there is a time limit. You can also look at the bottom of the page by clicking on posting rules.

As for the quandry you are in, I would look for an M D A / M N D Clin ic in your area and get an a ppoint ment. If this doc tor is using im pro per me di cal terms, I would let my fingers quickly do the walking through said we b si te.
 

prattstar

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Thanks for the heads up on the post edit option, each forum has different rules and I had tried to find info about editing a post prior to asking the question.

I have just spoken with the MND association here in the uk. They are a tremendous support and whilst i am not happy about the ambiguity of my DX, the Neuro giving it is well respected and whilst my symptoms are clearly not clear cut, this is the most appropriate route for now.

I am seeing the Neuro again in a few weeks and am assured i will have ample opportunity to ask questions around my DX and what it really means.

In the meantime my wife and I have chatted about this and agreed that we have to remain positive and enjoy our journey together regardless of where it takes us.

Ian
 

prattstar

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Have you been tested for neuromyotonia (aka Isaac's Syndrome)? If not I think you should. You can read more about it here:

Neuromyotonia - Wikipedia, the free encyclopedia

This is what I have. At first they made a diagnosis of mnd but later they discovered it was Isaac's Syndrome.

Night wolf,

Thanks for this info. They more of these options that come up, the more hope I have.

Yet another article to discuss with the Neuro.

Warm regards

Ian.
 

wright

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Hello Ian

I'm very sorry you have found yourself here and for what you are going through at the moment. I have refrained from commenting up until this point because you seemed a bit emotional initially and I didn't want to add to it by commenting on what "benign" means in terms of MND (i.e. all but confirming that MND is your diagnosis). Of course you are obviously still in a bit of shock but you seem to be dealing with things better as time passes. As the wonderful PALS and CALS of this forum will tell you: in time your perspective will change and you will see that life continues (and continues happily) no matter what our circumstances.

The term "benign" when referring to MND is a loosely used term to indicate a very slow progressing form of MND. It isn't something that is commonly heard (I actually don't care too much for it), which is why you were having trouble fully understanding what it meant as far as your diagnosis. Given you have no loss of strength in such a long period of time would be consistent with that.

One other thing (good thing for you): typically when things move slowly initially, they continue on that pace throught-out the disease process. Be hopeful that it is so slow that a cure will be realized during your journey. I would also make sure your neuro leaves no stone unturned in making a definitive diagnosis. As has been shared with you by Nighwolf, there is always that chance it is something else.

Take care and I wish you the best.
 

notme

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Patty,

Mom thought be ni gn cra mp fa scic u la tion on page 1. Ian con fir med that was the first di ag no sis on po st 24. Hopefully that will be his final di ag no sis.

To my knowledge, riis. wouldn't be prescribed for anything but ALS, unfortunately, as much as I'd hope it was something like that, it just doesn't sound that way to me.

Apparently Weight is familiar with the term benign with regard to ALS, but it seems as if slow progressing would have been the kinder thing to have told him to begin with.

I'd stil go for a second opinion of any ALS diagnosis, though. We're here if you need us, and Wrigjt is the resident expert on anything EMG.
 
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