Who to believe

[APL55]

Had a mri done on the 22nd and the neurosurgeon said it showed myelomalacia of the spinalcord and that I should get back in touch with my neurologist because he's not sold on me having ALS, I asked if myelomalica would show a dirty mri and he said yes, plus he said some of my symptoms don't match or that I should be seeing more.My main concern is I don't know how much he really knows.The next day after the mri,I had the usual problems, burning in the arms,hands and chest,stiffness in the same areas.My legs are not effective.Wed I got my grocerys and that same thing happens,except lately I've been getting lite headed and this morning my symptoms have gotten worse, I can still move around but my symptoms seem more sensory than anything. It feels like a rubber band has wound tight and it's getting ready to snap.Trying to set up a visit to John Hopkins, which I hope to do this week.

 

[abbas child]

Allan, I hope you get into Hopkins asap. You've been dealing with this so long. Best wishes with making an appointment!

 

[Alyoop]

If you have sensory issues such as burning. That would point away from ALS, which is good. Spinal issues could however cause the burning feeling. Can they fix the spinal problem?

Aly

 

[APL55]

I sent a email to my neurologist asking if my neurosurgeon had contacted him about my mri and what his thoughts were about the results, well today to my suprise he mailed me back and said he had not but would do it tomorrow.So as far as if there is anything they can do who knows, I guess it depends on if he see a reason to look in another direction or want to stay with it being ALS, as I stated before, I don't know how much the neurosrgeon knows and I don't want to get my hopes up.I have all my paperwork for John Hopkins ready to send, now the trick is to get there before something bad happens. People look at me and who talk with me have no clue to how I feel, some think it's an act, how can I say that I feel worse one day after the other but I do, they say things can't happen overnight but they do.Too bad they can't feel what I'm going through, even my doctors don't get it.....wish they would.Thanks for your help.

 

[Alyoop]

Best of luck getting an answer. Surgeons are a bit limited beyond cutting, but the neurosurgeons that I know are very wise men, so hopefully yours in right and can "fix it".
I often wish people could swap places with me for just a few hours, especially the Doctors who are supposed to care for us. My first neurologist was a close friend and ended up being just awful. I still look at him and want to trade places.........he is no longer my friend. He never talked to me again after I switched doctors! Rather large EGO I think.
Hopefully your neurosurgeon and neurologist will sit down and have a long awaited chat to get on the same page.

Will be thinking of you.
Aly

 

[DCL1964]

The neurosurgeon never said you have myelomalacia. He saw a contusion (or bruise) on your cervical spinal cord.

 

[APL55]

Dr Grinnan sent me a email and those were his words. That what he said the report said. I don't make up words I can't spell.

 

[APL55]

Hi Ann, sent my stuff off to Hopkins today. Now I play the wait game. Just trying not to get any worse than I am. Just want to get this all over with.