Very Scared and Confused

[liz]

vmd -

To complete/edit your user file, click on User CP above then click on Edit Profile. You are currently listed as having been diagnosed with MND because this is the default entry. You can change that with the click of a mouse.

Liz

 

[vmd]

Thank you. How do I delete the multiple messages I posted above?

 

[CindyM]

Hi VMD- I deleted them for you. Sometimes the board won't let us post duplicates but if it happens again there is a tab at the right bottom of your post that will let you edit your post or even delete it. Cindy

 

[vmd]

Thanks for the information.

 

[John1]

Hi VMD- I deleted them for you. Sometimes the board won't let us post duplicates but if it happens again there is a tab at the right bottom of your post that will let you edit your post or even delete it. Cindy

Hi Cindy,

How were you able to delete someone else's posts or are you a moderator? Also, I find that one only has a short period (several hours?) when one can edit a new post and after that it is inaccessible.

John

 

[Meg1]

Hi Baxter, My husband has had fascicultions since about sept. Drs in Cleveland said possibly benign. Did 2 EMG's neg. He only has them through his shoulders, elbow to elbow. 24/7. No pain. Some problems with speech at times. Coughs while eating. Legs and arms still strong. He finally got the MRI of the brain this past week. This was by my insistence to my family dr. Cleveland wanted us to wait 3 more months. The MRI diagnosed by family dr. as early ALS. So we now have an appt at OSU MD/ALS clinic. We also have a lot of praying goin on. I hipe my husband will use this forum too. It helps to know others that are facing the same stuff. Thanks for listening Alice

Alice, I think you need to talk with your family doc. One thing I can pretty much guarantee you is that he cannot possibly diagnose ALS from your husband's MRI. In fact, in general, a completely normal MRI is the expected finding in ALS--ALS is a diagnosis of exclusion. If your husband's MRI was normal that wouldn't rule out ALS but I can't imagine any doc with even the slightest clue about what he was doing would "diagnose" early ALS from a normal MRI combined with previous normal EMG's.

It's a fairly new finding that in a minority of ALS patients an MRI will reveal an abnormality in the subcorticospinal tract that is more common in ALS patients but it's not diagnostic and that fact is little known, anyway. AFAIK, no ALS experts use it to diagnose ALS.

You need more information. Although it's conceivable that your husband's MRi revealed such an anomaly and your family doc is right on top of the latest obscure research into MRI findings in ALS, it seems unlikely. Could it be that your doc just wrote "early ALS" in the diagnostic block of some form for insurance purposes?

Keep us posted.

 

[Al]

Hi John. We did make an announcement a while ago about Cindy becoming a moderator. You may have been in transit from the warmth to the cold and missed it. I moved it back to the top of the General page again. One of the anomalies of our software only lets the poster edit their post for a set period of time. I'm not sure what length or why but you could email David and ask if you like.
AL.

 

[John1]

Hi Al,

You are exactly right. I was in transit and it is cold. The bays are blocked with pack ice and even a few early icebergs are making their appearance. People rejoiced here today when it reached 7 degrees and we saw a few patches of blue - and no, don't bother telling me about the sun and heat in Ontario.

What a great choice in snaring Cindy for a moderator. We were lucky to have her as a member and now doubly fortunate.

John

 

[Al]

Well it got to 15 here today but 0 tonight. That's 59F and 32F for you metrically challenged folks. I'm not bragging about the heat yet. Cindy's a great help to us. We could probably use another and we are looking. AL.