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Tony292

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I have had a lot of Mondays that I have dreaded, mostly due to some work deadline or mind numbing meeting I knew I would have to attend on a Monday. This coming Monday is different, I have been to 7, yes seven neurologists in 24 months, 5 of which told me nothing, one of which told me off the record that I definitely had ALS and would be in a wheelchair in two years, but on the record would only say I had MND and "while the diagnosis is not established, patient appears to be presenting and early case of ALS, but will continue to look in the differential, and one Neuro that thinks I have PLS.

So this Monday is epic, I go to the mayo clinic, they shouldn't be confused, these are the best neuros in the world or so it seems. Yet I am a bit apprehensive due to all that I have been through and the failure at each step to gain a diagnosis. I can deal much better with adversity than ambiguity. I am afraid that on Monday, mayo docs will examine me, scratch their heads, run me through a couple more tests, and tell me to come back in six months. If this happens, I will probably slap some random person and then flop down on the floor and have a fit... Well maybe not, but that is exactly what I will want to do. I can guarantee that nobody within a five state region of Rochester, MN will be more eager for me to get a diagnosis (no matter what that diagnosis may be) than this guy right here.

I'm so tired of being sick and tired, and of doctors not being able to tell me anything other then I have MND... Sorry for the rant! Sometimes we we all just need to vent a little... I'll be very excited/nervous on Monday...
 
we know just how you feel! not knowing became such a hard thing. At one point we were told "it just wasn't presenting like typical ALS, perhaps it will stop at some point and that will be what we are stuck with and still not know what it was, or it could advance and eventually revel itself'.......the six hour drive home was mostly silent.
somehow finally giving the monster a name brought it out of the shadows so we could deal with it
 
Agreed! Diagnosis was horrible but at least we could try to "prepare" once we knew. Knowledge is power so they say..
 
Welcome to my world. I have seen 4 neurologists in six months, the first one was afraid to diagnose me....but tied me up for 3 months( ordering MRI's, lumbar punctures, cat scans and an EMG, swallow barium study) before sending me to our local ALS clinic. I have seen all three docs in our ALS clinic ...but the first visit was terrifying to say the least.
It ended up being a "come to Jesus" visit...he examined me for about an hour, looked me in the eye and said he was 90% sure of ALS. Then scheduled me for another EMG and confirmed his clinical diagnosis. I knew in my heart, and from extensive research that I had done that I had an MND, but there is nothing like a dude in a white lab coat telling you have ALS and you are terminal>
Good luck at The Mayo Clinic!
 
>If this happens, I will probably slap some random person and then flop down on the floor and have a fit...

sounds reasonable to me :)

>one of which told me off the record that I definitely had ALS and would be in a wheelchair in two years

idiot neuro quacks ... some of them are so full of sh*t their ears stink -- no one can forecast ALS progression.

>Good luck at The Mayo Clinic!

ditto that!
 
Yes!
So aggravating when they will not just come out with it.
Specialists in ALS make all the difference. They can almost diagnose just by observing you.
The head of my clinic did it by telephone , but at last I finally knew.
 
Wow, some of you have been thru so much getting a DX. My DH was diagnosed (DX) in February and confirmed in March. Both by physical exam and only MRI's to rule out neck problems and blood test to rule out heavy metal poisoning. No electrical muscle test ordered. The fasculiations (or however you spell it) were pronounced over most of his body with muscle wasting in his left hand. No Rizoule (another ?) mentioned or recommended. Docs said just go enjoy your life in your RV.

Now three months later it's in both hands, some left foot drop and core strength loss. Falls about once a week but we have gone and enjoyed! Enjoying every moment of exploring, friends and relatives we can squeeze in!

We're fortunate though as we're early 70's and our hearts ache for you younger folks with families. We each need to ask our own questions and find our own ways. What's right for us isn't necessarily right for someone else, just like our prognosis. The support on this site is awesome and I love the sharing. We've learned so much.

Sherry
 
Sherry, that whole process sounds a bit iffy -- no EMG and no mention of Riluzole?!
I also see no indication of a 2nd opinion, which is pretty much a given ... was this a recognized ALS specialist..?

back with our regularly scheduled program:
then flop down on the floor and have a fit
Naw, don't do that -- they'll send you over to the epilepsy clinic and the whole thing will start over...
 
I agree with Greg ...

contact, explain, and ask for their thoughts ...

The ALS Association, Minnesota/North Dakota/South Dakota Chapter
333 North Washington Ave, Suite 105
Minneapolis, MN 55401
Phone: 612/888-672-0484
Fax: 612-672-9110
 
Wow, I can't imagine hanging on that long without a sure diagnosis. Although my husband went through preliminary tests and some second guessing by his first neuro in our hometown, once he was referred to an ALS clinic with a true world renowned ALS specialist, his diagnosis came as swiftly as a tornado in May. Bad Balance is right about going to a specialist at an ALS clinic, it's as though they can take one look at you and "know". We were told he would not leave the clinic that day without a 99% sure diagnosis one way or the other.
 
Oh so sorry I didn't explain it clearly. First DX in Feb by thorough Neuro. Second a month later by nationally recognized ALS Neuro in San Diego. Symptoms so obvious and with MRI & blood tests ruling out other possibles we're guessing they just didn't think muscle test needed and we are aware of the different thoughts on the current med.

Also seen last month by Spinal Clinic specialist at VA in Manchester. We don't doubt the DX. Just dealing with progression.

Thanks for your concern.

Sherry
 
Oh, the quacking neurologists that we must see. My local neuro said it was in the differential diagnosis, go see this ALS expert. Then local neuro gets in a BIG tizzy because I won't attend his MDA ALS clinic that is not multi-disciplinary and doesn't have an ALS expert. Holds my PWC order for 45 days, with several claims of we don't have the orders from the clinic.

Beware of the quackers. Their pecking is worse than their quacking.
 
>Beware of the quackers. Their pecking is worse than their quacking.

ditto that! quack !
 
>If this happens, I will probably slap some random person and

Just a word to the wise...with ALS/MND it is insanity to "slap anyone around"...trust me. I almost got in a world of hurt the other day when some clod pulled out in front of me and I tried to "signal" him but couldn't move my fingers apart...

Made me think.
 
On a good day if there is no swelling Tim can make the beginnings of a fist, except that his middle fingers won't clench. Hmmmm?
 
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