15 replies to this topic

[rue2you]

Just wanted to say that I am headed to the Cleveland Clinic tomorrow to see if they can figure out why I became paralyzed and what is up with me. So far I have been told that it is possibly MS, a spinal strike, transverse mylitus, or Guillian Barre. My neuro doesn't know for sure though so he has referred me on. He told me that I may come back home even more confused, but it is worth that risk in the hopes they can figure something out.

Wish me luck!!

[araitn]

Good luck! I hope they can figure it out for you.

[greybeard]

Good luck. I don't know why it should be so, but it was a comfort for me to get a diagnosis, even though the news wasn't great. All the best.

[jass1]

my friend was paralyzed for two years and nobody know way finally he went to the mayo clinic they found he had compassion L 2 to L 5 then three months after surgery he walked he is from florida he visited me in doha qatar last month and he e-mailed me from taiwan yesterday he said he on his way to germany on biz trip


Good luck

[McTavish]

araitn, on Oct 12 2009, 04:34 AM, said:

Good luck! I hope they can figure it out for you.

Good Luck, hope they find the cause of your paralysis, let us know how you get on.

[chickadee]

Good luck, and may the limbo be over!

[rue2you]

Thanks everybody!!
Quick update:
The neurologist spent 2 hours with us asking us hundreds of questions and examining me over and over and over! He scraped, poked, bent, pecked and banged all over me and asked questions the whole time. He was very thorough and asked me questions that no one has yet asked me. He said that he is confident, based on the neuro exam, that I have some sort of lesion at the T10 level. My neuro here in Cincy labeled me at L3-4. How do they change it like that?
He wants to run several more tests - another EMG, a MRV (like an MRI but I think it looks at your vascular also), visual evoked tests, blood work, and one or 2 more that I can't think of. We were going to schedule these as outpatient, but the doctor called last night and actually wants to admit me to the hospital to run these tests. So, we head back Monday morning to do just that.
I guess we will either find what he is looking for, or, be able to rule a lot of other things out.

[greybeard]

Sounds like good progress. Hope it's helping.

[ClaraTaylor]

Sounds like you're going to be a bit of a pin cushion for a while.
Wishing you all of the best!!

[StillFingers]

I sure hope you find out whats going on Rue, my thoughts are with you...Jerry

[edlee]

If I believed in prayer, I would for your hoped outcome,,, as it is, I hope you will accept my best wishes for the same.
ed

[rue2you]

This is the update on my visit to Cleveland for those of you who are interested.
I was supposed to come there and check in as a patient for 2 days of testing. It ended up that we were there for 6 days as they ran a battery of tests and blood work.
In summary, they looked for every possible disease out there that could account for the paralysis. They searched for everything that is common and extremely rare. They looked for the possibility of my symptoms of 2008 and the paralysis in 2009 either being one problem or two separate issues. Just the MRI alone took over 3 hours!!
In the end, they told me that they feel they have ruled out any disease causing this. They said that their was "not enough evidence to support a disease". There are lesions on my spine. One at the C4-C6 range, one at T10 and the lumbar and sacral parts show "demylanation". They do not think they are MS lesions though because they do not seem typical. They do not glow with the gadolinium dye and yada yada. So...they feel like I had some sort of infection that was attacking my spinal cord throughout the year. The day before I became paralyzed I had a terrible case of pink eye. They think maybe that was kind of the last straw that pushed it on over. However, it has now been 7 months post and so evidence of the infection is now gone.
They do not know what my outcome will be. The treatment I would have needed at the time was strong steroids and antibiotics and was considered by my doctor but I was 5 months pregnant at the time and we could not pursue that. Most gains are made within the first few months they say so they do not know what will come back or what won't. I am still going to therapy twice a week and will work as hard as I can.
Honestly, I feel like I really still do not have a 100% answer as to why I am paralyzed so that leaves me feeling a little stupid when people ask. However, I am thankful that it is not a disease that is going to keep taking parts of me away. I am glad to feel that I can raise my kids without having to be sick. That gives me a peace of mind.
I know I can live like this - not what I would have planned for sure - but I am still happy and our home is happy and peaceful and I am thrilled to be able to know that I can wake up every day and live!
There are a lot of people worse off than me so I am going to be thankful for what I do have and try not to dwell on what I don't. I don't have to tell you all that some days are worse than others and it has kind of hit me all over again with the best doctors not being able to tell me they can fix this, but I am "readjusting" again (I am sure I will have to do that many times in my life won't I?). I know I am such a baby in all of this compared to some of you so I don't want to sound whiney but I know I can tell you guys how I feel and you understand.
My husband is so wonderful and supportive and they kids are little troopers. We are all sick to death of doctor's visits and are just ready to move on with life.
So....that is what we are going to do! Thank you all for your well wishes earlier!

[greybeard]

Sounds as though they've established exactly what is wrong with you, and what isn't, even if they can't state a definite cause. They couldn't with me either. But it is good to know you are not being attacked by some insidious disease.

[rue2you]

Thank you Greybeard and yes, I am glad it is not a disease!!

[edlee]

I do wish it could have been more definitive for you, Rue,,, but as you say, life is good,,, live well, Hon.
ed

[rue2you]

Thank you Ed. You are a sweetie.