Introducing the Newest North Carolina MS Member

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Introducing the Newest North Carolina MS Member

Postby Blitz » Thu Mar 25, 2010 8:01 pm

Hi everyone. My name is Lewis and I live in Greenville, NC, USA. I have been following this site since November 2009. I decided to join and make an introduction since my wife received her official MS diagnosis on March 23, 2010.

Our Story: On November 1, 2009 my wife began having minor numbness and tingling in her feet. By the late afternoon, she was unable to feel the gas pedal in the car. She refused to go to the emergency room that night. I walked her into the emergency room on November 2009.

We saw several docs that day. CT was ok. Blood work came back fine. The neurologist still felt uneasy about letting her go home so she was admitted. The intial diagnosis was transverse mylitis.

Four days later, my wife was paralyzed from mid-chest (T-5) downward. She received steroids, plasmaphoresis, etc. Intial MRI showed 3 brain lesions and four spinal cord lesions.

Since then, we have seen four neurologists and traveled to Johns Hopkins. My wife's condition has continued to worsen. She is still paralyzed, has tremors in her upper extrems, and has some cognitive changes.

Her latest MRI shows four new brain lesions with three showing enhancement. Her spinal lesions are now basically one complete lesion from T-5 down. She recieved her Tysabri infusion yesterday.

I have found a wealth of information on this site. As for the slow diagnosis, there was some evidence that she had suffered from ADEMs. I look forward to continuing my education and appreciate everyone's contributions.

Here's to learning what the new normal will be and what it means to truly live day to day.
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Postby dlb » Thu Mar 25, 2010 9:55 pm

Hi Lewis,
Welcome to the site & sorry you are going through all of this. It is a difficult thing to learn that someone in the family has a life- changing condition. It affects the whole family. You will learn a lot on this site and fortunately there is so much happening right now in the world of MS. Sounds like you are getting help at a renowned medical facility. Wishing you & your wife the very best. Learn about CCSVI and look for help. There seems to be many options available in the USA. Here in Canada, I guess we tend to be a little on the conservative side and much less is happening, but I have confidence that eventually we'll be on board as well!

Take care,
Deb
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Regarding CCSVI

Postby Blitz » Fri Mar 26, 2010 9:12 am

The information on CCSVI is what originally brought me to this site. Our local neuro is open to the research but skeptical at this point. We plan to pursue getting the scans and images of my wife's veins next month either through neuro or our PCP.

The neuro we saw at Johns Hopkins completely dismissed CCSVI. She did leave small door open stating that it would be several years before detailed and large enough studies were performed. Interestingly, part of her medical school was funded by the national MS Society.

I think our chances at CCSVI will be largely determined by what form of MS my wife ultimately has. Her MS has been extremely aggressive so far. Our local neuro stated this week that he has never seen a spinal attack so severe and the Johns Hopkins nuero has requested to show my wife's case at the next grand rounds discussion in the neuro department. Not the attention we wanted.

Thanks for the encouragement.
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Postby dlb » Fri Mar 26, 2010 10:18 am

Lewis,

It's a strange & wacky disease - no 2 courses of disease are completely alike. I think that is why the cure has been so elusive. I didn't realize until recently that thy have known about MS / lesions on the brain as long as they have. It still is so positive that much is known now as compared to even 20 years ago & I believe we are on the cusp.

My neuro is cautiously optimistic & I think they are all waiting for the big MS convention that is being held in April for a detailed presentation about the findings of BNAC's first portion of their study. It seems I read that somewhere. Did you say whether there is a family history of MS for your wife? There is a big family history on my father's side and although they recognize a genetic link, they believe that there is another trigger & all kinds of speculation about what that may be? It's a difficult diagnosis to have to swallow, but I'm happy that we are in this time frame, where there is so much hope. I hope once your wife settles down a little, things will even out for her. It is very difficult to come to terms with the dx and it's very scary & stress is a HUGE factor in relapses.
All the best,
D
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Postby Blitz » Fri Mar 26, 2010 12:12 pm

No specific family history of MS. However, my wife's mother developed Gillian Barre syndrome five years ago. The GB left my wife's mother with severe neuro deficts and wheelchair bound.

On another note in association with CCSVI, my wife's dad and brother have both been diagnosised with hemochromatosis which requires them to donate blood every month to prevent iron build-up in their bodies. Makes me wonder.
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Postby dlb » Fri Mar 26, 2010 2:03 pm

WOW.... the hemochromatosis thing. Have you been following the "Phlebotomy, anyone" thread? I have yet to follow up on that with a doc, just because I'm never up to a conflict - just me!! But that whole idea is so very interesting. My paternal grandfather who passed more than 40 years ago had some kind of condition where they had to draw blood from him regularly - which is a treatment for the hemochromatosis. I've googled the condition & I'm very interested in following up on this blood panel &/or genetic testing. Merlyn the author of the thread I listed above and another thread that suggests that blood panels should be first (can't remember the name of that thread...) talks about her MS worsening as she enters menopause & suggests that natural monthly blood-letting in a woman of child-bearing age, may be the reason why some women experience less MS symptoms & that this condition is the genetic link??? I just know that there is a something that no one can answer now about my grandfather & that there is a strong MS link on my paternal side, most especially in 1 uncle's family. I have 2 cousins in one family with the disease. One of those guys has a daughter with MS & another sister in the family has a daughter with MS. I also have another cousin (my aunt's daughter that was diagnosed 30 some years ago as a teen) and now myself - diagnosed in 2005. 3 siblings in my father's family with children afflicted & then in the one family, a second generation with 2 more. I think you should do more than wonder about the possibility of hemochromatosis, especially while you are getting medical care right now. Please keep me informed about this - very interesting comment! and look at those threads if you haven't already.
D
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Postby Blitz » Fri Mar 26, 2010 3:05 pm

My wife's PCP told her that hemochromatosis was not an issue for her because of her "monthly" blood loss. Now, many years after her dad and brother's hemochromatosis, here we are wondering.

We certainly plan to follow up on the scans. Hopefully, our PCP won't have an issue ordering them. So far, he has been more than willing to assist us.

Also, we just recieved an email from our John Hopkins doc that she and our local neuro had spoken. She is waiting for the new MRIs and then she will present our case at their next conference.

The John Hopkins Neurologist also wants my wife to return for a consult with their rehab unit - KKI. They offer a one day evaluation and if they feel they can assist you they will set up a two week program for you. Anyone ever participate in the KKI's rehab program at Johns Hopkins?
They realize that one day or even two weeks is not a long term solution but hope that they can identify therapies that you can locate at home.
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Postby Bethr » Tue Mar 08, 2011 7:50 pm

The "monthly blood loss" will save you from hemochromatosis mantra is a load of rubbish. Yes, it does help, but even young women still get iron overloads and need phlebs. Ferritin doesn't have to be raised to have an iron overload, especially in women and children.
The test to do is transferrin saturation, and of course genetic testing.
I'm surprised your wife hasn't been tested already since it obviously runs in her family. That is standard practice (or should be).
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Hi

Postby NCLizD » Sun Mar 20, 2011 6:40 am

Just joined the group and saw that you are from Greenville, NC. I'm not too far from there and go to G-ville for neuro and specialists appointments. Nice to meet you and sorry your wife is going thru so much!
"When weakness turns my ego up, I know you'll count on the me from yesterday" ~ Incubus

Courage is being afraid, but going on anyway ~ Dan Rather
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