Very Scared and Confused

[vmd]

That doesn't sound good. So does this mean that local neuros are more likely to miss the diagnosis? If so, then do the symptoms become progressively worse to the point that ALS is apparent and one doesn't need a neuro to diagnose the obvious?

This is becoming very difficult because I was hoping that the local neuro could give me some peace of mind, one way or the other.

 

[ltr]

Liz - I love your addition to the list! How could I ever have forgotten the hmmm's!

VMD - we didn't mean to worry you, it's just that many of us have had neuro's like the above mentioned. That doesn't mean they are all like that. Usually, though, if you want a thorough diagnosis you should just head straight for an ALS clinic. In my opinion, it isn't worth wasting your time. A good neuro would send you there anyway. Good luck. Leslie

 

[vmd]

Liz and Lesie:

I already have an appointment with the local neuro, so I will keep the appointment, but will ask for a referral to an ALS specialist. The problem is that I will have to travel far to see one. I read that the mean time from first symptoms to diagnosis is about 1 year. This is a long time to have the dagger hanging over your head!

Also, what is the difference between an ALS clinic, a certified center, or a chapter? The closest places for me are the certified centers and chapter (300 miles or so), but the ALS clinic is more than a thousand miles away. I live in North Idaho.

 

[Jamiet]

VMD.....

LTR is right on!

Local Neuros are horrible. YOu may luck up and get a good one, but, don't even ask for the referral, you don't need it. Call the ALS Clinic yourself and they will accept you once you tell them your symptoms. No distance is too far when your health is concerned!

YOu will offend the local neruo by asking for a referral, trust me. I almost slapped mine (the first of 5), when i asked for the referral and he told me it was a slap in his face......LITERALLY.... he almost got the slap!

go straight to the experts, don't waste time.

Rgds,

Jamie

 

[Al]

The chapters usually do support, fundraising and local awareness. Not sure about the center and clinic difference as they are American terms. It may explain it on the ALSA site.
AL.

 

[vmd]

Thanks Al.

Although I have yet to have the electrophysiological studies, I know that I have lost strength on my right arm. I know this because I cannot lift the same amount of weight I have been able to in the past. This change has come on quite quickly (within the last 2 months). In addition, within the last week, I am no longer able to lift the same amount of weight and with as many repetitions with my right wrist. That is, my muscles on the right wrist fatigue quicker than my left and the change has become apparent in the last week. My right bicep is the same size as the left, whereas before the right arm (my dominant arm), was larger. Thus, atrophy. These symptoms certainly appear to be ALS. In trying to find alternative explanations, I have yet to find some.

 

[CindyM]

Hi VMD- I don't have the same issues with my local neurologists as they are the ones who first suspected ALS and sent me to the clinic. It did take awhile, though, since they treated me for ulner nerve, carpel tunnel, and a pinched nerve in my neck. I still have all these things but now I have lost muscle and weakness to go with it.

The ALS clinic, however, is waiting for muscle loss that cannot be explained by the pinched nerves. That is happening in my legs but very slowly. So what I get out of this is that a clinical DX depends upon observation, since there really aren't any tests for ALS. And observation is a very subjective thing. So any month they don't confirm MND is a good month for me! Cindy

 

[Jamiet]

Cindy is right, i am biased, based upon the neuros around here. Hopefully you get a good one. They are scarce.

I would still sched the appt. at the ALS clinic / center..same thing. If you don't need it, then all you have to do is cancel it.

Good luck!

 

[shannonme]

Liz and Lesie:

I already have an appointment with the local neuro, so I will keep the appointment, but will ask for a referral to an ALS specialist. The problem is that I will have to travel far to see one. I read that the mean time from first symptoms to diagnosis is about 1 year. This is a long time to have the dagger hanging over your head!

Also, what is the difference between an ALS clinic, a certified center, or a chapter? The closest places for me are the certified centers and chapter (300 miles or so), but the ALS clinic is more than a thousand miles away. I live in North Idaho.

Hi VMD-

Seattle has two ALS Clinic's to choose from:
Virginia Mason Medical Center
1100 Ninth Avenue
Seattle, Washington 98104
Phone: 206-341-0420
Fax: 206-625-7240
Website: http://www.virginiamason.org

University of Washington Medical Center
1959 NE Pacific
Seattle, Washington 98195-6115
Phone: 206-598-4590
Fax: 206-598-2813
E-mail: [email protected]
Website: http://www.washington.edu/medical/

Good luck-
Shannon

 

[CindyM]

Jamie! I never said you were biased! I was just thinking I've been lucky, is all. Cindy

 

[CindyM]

AnnMarie-thanks for the vote of confidence. Al, David, TBear and Carol got us all started on the right track. It feels good to be a part of this effort. Cindy

 

[vmd]

Shannon:

Thank you for the information regarding the Seattle centers.

One of the major problems with waiting for an accurate diagnosis is the time. One would think that with the Escorial criteria being so specific, that this would not be the case. In my situation, I have noticed a very quickly progressing clinical picture. I suppose this is not good news for me, but the loss of strength within the last 2 months has been alarming.

Since I am new here, I'm assuming there is a registry on the site. I'm curious as to how many of the posters on this site have been formally diagnosed with MND.

 

[anne]

Hi VMD. My mom was diagnosed with MND June 2006. Her's started with bulbar symptoms. She has full mobility of her limbs. However, I am now starting to wonder if the diagnosis will change to ALS because I have noticed she is having some problems with her neck being stiff and has decreased mobility of her neck. Anne

 

[vmd]

Anne:

I wish your mother well. I also have experienced neck stiffness going back for more than a year, but I did not start to have the weakness problems until recently. Of course, I may have had such symptoms before but they were not as noticeable as they are today.

 

[vmd]

Anne:

I wish your mother well. I also have experienced neck stiffness going back for more than a year, but I did not start to have the weakness problems until recently. Of course, I may have had such symptoms before but they were not as noticeable as they are today.