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jennibf

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Last Thursday I met with the neuropsychologist to go over my evaluation from the week before. My evaluation showed that I either have vascular disease or Multiple Sclerosis. Based on the results of the tests I have cognitive issues, all pointing to subcortical pathology.

I'm not scheduled to see my neurologist for a few more months. I asked the neuropsych what he thought it was. He said he hated to say it but he strongly feels it is M.S. He said my cognitive signs line up exactly with my motor signs.

I know this is an ALS board. I have to find an MS board. I am still in limbo and am going to start therapy soon, due to the good doctor's "strong recommendation".

I have cognitive issues. I knew I did and yet I was still in shock. I am in shock and I am angry. No wonder so many things weren't going well. I got a "16/16" in effort which he said meant I tried my best. He said they have ways of checking that. I had no idea my small motor skills were involved. I had no idea how bad off I was. My memory is the least of my issues.

If anyone knows of a good MS board, please let me know. I have yet to hear from my neuro and the neuropsych said the neuro will need to make the diagnosis "technically". How can they do that w/o lesions? How can they do that w/o even ordering a spinal tap to check for the "o" bands? And I've seen two neurologist, one who is internationally known!

So I've had cardiomyopathy and now probable MS? Both autoimmune diseases!

No one needs to respond, Al-you don't even have to post this. I am just so frustrated and needed a little "type" therapy.
 

rose

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Jennifer,

It sounds like you're in shock. I don't have words of wisdom, but please know that you have friends here, and more than happy to listen to you as you try to sort out your thoughts and come to terms with this.

I do not have any recommendations as far as a MS forum. However, hopefully Laurel will catch your post soon. I know she's been living with MS a long time, and should be able to give you some good support and advise. ((HUGS))
 

jennibf

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Thank you, Rose :) I have a lot of emotions right now. I feel sad, I feel angry and I feel shocked. I am also scared, because cognitive issues are usually not seen until the advanced stages of MS. I don't even want to think what that might mean for me long term. The doctor gave me a book with a lot of brain exercises to do and I am to go in for regular evaluations. He said he was sending his report to the neurologist and that this should prompt a response but it hasn't as of yet. GRRRRRRR....I know it could be much worse. I know I am lucky in a sense.

Thank you so much. You have prompted me to share my emotions before (via email) and I think they've erupted now :)

hugs!
 

crystalkk

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Jennifer,

You can vent anytime you want, we are here for you......
I would definately ask for the spinal tap.
 

Al

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Hi Jenn. You said I didn't have to reply but I just wanted to say something. Unfortunately I just don't know what to say.

AL.
 

pmbenb83

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Hi Jennifer,
I also don't know a lot about MS, but when my husband tried IVIG treatments as a last effort before his ALS diagnosis, there were several people getting the treatment for their MS. They had the treatments every 6 weeks, I think, which helped them have an active life in between treatments. One was a nurse and another was a business man who would bring his laptop with him and conduct business while being infused.

I truly hope something like this may help you too!

Take care.
Pam B in Va
 

olly

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hi jennifer

sorry to hear your diagnosed of ms.
i was thought to have ms for several years before it was ruled out,yet i have progressing cognitive problems.
they have slowly got worse,more so over the past couple of years.
my memory is terrible,i have to write things down or my son reminds me.
concentration is poor and i can get confused doing simple little jobs.

my aunt had ms,she passed away nearly 10yrs ago .
she had had it since her early 20's and was in her 50's when she died,the thing is when i was little i could remember her always in a wheelchair but for some years before she died she seemed alot better and walking.
i know others with ms who work and live active lives.
there are so many new better drugs available for ms now.
please look into the newer ones besides beta interferon,be informed about all the choices.
i wish you all the best with this and a slow progression
 

jennibf

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Thank you all! I have a better state of mind today. I really appreciate that you all let me stay and continue to be supportive and caring!

Al, by saying that you made me SMILE :)
 

lydia

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Jenn,

I don't know what happened, but this is the second time this week when I post something and it is just gone...I wanted to let you know that I have been thinking about you, and that I was struck by your report for two reasons. 1) I wondered what actually happens with the neuro psyche to give him that impression, and 2) about the possibility of the vascular issue. I just had my GP bring up the possibility of MS (wants to send me back to neuro) and he also discussed a finding from last summer (that everyone seems to ignore) about my supposedly having cerebral small vessel disease (which is some type of vascular disorder...).

I know I had more to say, but I am running out and was bothered to see my post is gone. I wonder if I am not hitting submit?

Take care

Lydia
 

Marjorie R. Wilcox

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I do know it is more conclusive to diagnosed MS because of the lesions they find on testing. I know too, it is better to have MS because there are so many helpful meds and most live a full life now. I know of a young woman diagnosed with MS after the birth of her first child, and has since had another. She undergoes treatments with various meds and the symptoms come and go. I understand she needs rest and help only at those times when it flares up. I think MS is very much more controlled and longevity higher than ALS.

I hope you can be cheered that you might have the lesser of evils.
 

jennibf

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Marjorie,
I do feel I have the lesser of two evils, as you say.
Lydia,
The neuropsych said that all of my cognitive issues point to the blah blah blah about the myelin sheath and that the only other thing could be a vascular disease but he said I am not old enough nor do I have the risk factors. I will post more later, or I can email you with what was in the report. I say blah blah blah because my cognitive issues apparently prevent me from remembering :)
thank you both!

jennifer
 
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