CONFUSED....FRUSTRATED...NEED SOME ADVISE...PLEASE!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CONFUSED....FRUSTRATED...NEED SOME ADVISE...PLEASE!!!

Postby Twin » Wed Jun 23, 2010 6:51 am

Around the 15th of December my left leg went numb. Then had some pain in my right shoulder blade. Thought I had pinched nerve. Went to the chiro and had 2 adjustments. The evening of my 2nd treatment, left leg still numb, went to bed that night and I couldn't lift my right leg to get my pants off. So that was a Thursday, made it thru the weekend, well struggled!! No use of my right leg. Went to work on Monday, Dec. 21 and had had enough. Went to my general doctor, and he immediately sent me to the hospital for an MRI. Well, they admitted me. Monday and Tuesday had MRI's, on Wednesday morning they gave me a lumbar puncture. Wednesday night the Neuro came in and told me that I had MS. Well, then he said, a form of MS. Called it both TM and Clinically Isolated Synrome. Said my T1 was affected. Thursday morning the RN came in and gave me a shot of Copaxone. Said I will have to give myself this shot everday. That afternoon, Xmas Eve I was sent home. DONE.
Was down all Xmas weekend with a spinal headache from the lumbar puncture. IT SUCKED!!!
Well, so since I have been home I have been giving myself a shot everyday. Numbness is from below my breasts down, left side the worse. Left side very sensitve. Almost feels like I am being shocked.
So last week I went o UNMC MS Research Center. Saw the Dr. she read my MRI from here and said they weren't clear enough for her to diagonse me with MS. But for sure TM. She put me on Steroids, last week on Wed morning I took 25 pills, Friday morning took 25 pills and Sunday took the last 25. Taking 25 pills at a time SUCKS!!! So it has been a few days since I have been done with the pills and today I am not feeling too good. My legs are very weak, very wobbly and my numbness seems to be a bit worse. Not horrible, but for sure there.
I am very frustrated, and just want to know what is going on. I have go back to UNMC in March for a full work up of MRI's I guess to make a more clear diagnosis.
I have not worked since 21DEC. I have a 5yr old son and a 5 month old son!!! I really am going nuts staying home all day, but I want to make sure I am doing the right thing. I need my health!! And financially I have to, daycare is expensive!!!
I just want to know what is going on with me!!! I hate that I have to wait till March to find out! It's really driving me crazy. I just want to feel better, my legs are for sure not 100% very weak, feel like jello!! Makes me nervous carrying my son! The numbness is driving me crazy, I guess it all is!!! I just want answers, and am growing very impatient!!!

Since this above statement, it is now June 2010, and here are the new developments. One of my last MRI's showed that I had an enlarge Thyroid. Well one week ago I had Thyroid surgery and they removed a nodule on my left side the size of a softball. No cancer. The right side they said is also enlarged but not causing any problems I guess so they left it there. I am a bit amazed at some of the things I am reading.

When I was initially told my thyroid was enlarged I asked if any of this would be related, from the Neuro and also the ENT doctor they immediately responded NO!!!

Is there any hope out there for me? I am growing very impatient and very frustrated!!!
Thank you for whoever responds to this!!!
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Postby Twin » Wed Jun 23, 2010 6:53 am

Was just reading what I posted and all that happened the beginning of the year. Since then I have had 3-4 mri's, they all are showing nothing new. Still the lesion on my T1. My left side is completely numb from my breast area down. My legs are aching all the time. And I am just really tired and feel like crap!!! I am only 37, I don't think I should feel this tired!!!
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Postby PCakes » Wed Jun 23, 2010 7:36 am

Good morning 'Twin'.. welcome to 'Tims'..another great site to check out.. http://www.facebook.com/pages/CCSVI-in- ... 297?ref=ts read read read.. you will find answers to many of your questions and great people to help if you can't..
I'm so sorry to read your story and no, you shouldn't feel this way!! ... and yes, we have all been told thyroid, and many other common problems have no relevance??

We are all trapped in a nightmare with a sandman who won't let us wake up. ..But, that is today.. tomorrow we wake and win!!

Good luck!

p.s. are you really a 'twin'?
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Hi

Postby Andie » Wed Jun 23, 2010 8:08 am

I understand your frustration and pain--- this is very new to you-- but the good news is it will get better- and the 25 pills a day help-- keep downing them- I understand how hard it is to take care of your children and address your needs- however take a big breath- and kiss your children. It will get better. You will quickly get to understand your body and what you need to feel better. The first year or so is the hardest- this website support group is fantastic- reach out for support

Andie
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Postby Twin » Wed Jun 23, 2010 8:51 am

Hello PCakes,

Thank you for your reply. YES, I am a twin!!!

I look forward to reading the link you sent me!! Thank you so very much!!!

I am not taking any pills at this time, that was all back in Jan. Nothing has helped and so nothing new had been prescribed for me!
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Postby Cece » Wed Jun 23, 2010 9:00 am

I am trying to think what would have helped when I was first diagnosed. It is such a shock to go from relative health to coping with MS. Hang in there, it's hard, it helps to take it day by day? If fatigue is an issue, I've found provigil to be very effective. They give it to people with shift work or sleep apnea who are tired during the day but off label they give it to MSers too.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby PCakes » Wed Jun 23, 2010 9:17 am

You are very welcome :).. the administrator of the site i suggested is.. 'Cheerleader' .. who, i strongly suggest you read and learn from.. you'll understand why very quickly.. a twin..cool! twins are very important to this research ..have a great day!
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Postby Twin » Wed Jun 23, 2010 9:22 am

Where do I go to read about cheerleader?
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Postby BamBAM » Wed Jun 23, 2010 10:46 am

Hi Twin

Cheerleader posts on this site and also on Facebook ( CCSVI in Multiple schlerosis ),look it up if you have facebook.

Did the Doctors give you a diagnoses of MS or are they still calling it TM?, I ask because there is another great forum for people with TM.

myelitis.org

Check it out, Post your story there and you will recieve lots of great info and support, There is also a woman who posts on both this site and Myelitis.org her name here is TMRox and on the TM board she goes by Rox, As far as I know she is the first person DXed with TM to also be DXed with CCSVI, She has also had the liberation procedure

But you are surrounded with great people here on this board or Facebook And also the TM forum, We are here to help

I also have TM, and MS my lesions are located on my C-spine just below my neck, So I have symptoms from my shoulders down, I was doing good on my recovery from TM until I came down with the swine flu, Then I developed Optic Neuritis and Tinnitus in my ear and they called it MS from that point, Fatigue is the killer but Provigil works well for me, You should ask your Neuro about it, I am curious as to why you had to take Steroids in pill for, When my TM hit me I was given 1000 mgs of Solumendrol steroids by IV for 4 days

I wish I could give you more answers but I am just over a year into this and dont really have any answers, There is no way to tell how much recovery you will have only time will tell, But it is turning into a whole new world for people with Nerological disorders, New Doctors and info such as CCSVI, New imaging machines and technologies, There has been a great deal learned about MS over the last year so hand in there
Its not about the disability, Its about the ability!
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Postby Rieja » Wed Jun 23, 2010 11:42 am

Just as PCakes eluded to - if you truly are a twin, that is typically prime candidacy for testing and diagnositcs, provided your twin will go. Researchers love twins because of natural control they will get. May want to look into that. Perhaps the Buffalo study wil lbe interested <shrug>
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Postby Twin » Wed Jun 23, 2010 11:52 am

how do you find out about studies? We would be willing to do anything! I want to feel better!
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Postby PCakes » Wed Jun 23, 2010 12:03 pm

hi again,

Cheerleader's facebook site is the link i posted to you earlier.. here it is again.. http://www.facebook.com/pages/CCSVI-in- ... 297?ref=ts

Where are you located?.. Buffalo is one possibility.. http://www.buffalo.edu/news/10937
.. another is the University of British Columbia, Canada. They are working towards a 'twin' study but it's a "don't call us..we'll call you" scenario..if you are one of their patients, you are likely being considered...
Last edited by PCakes on Wed Jun 23, 2010 12:06 pm, edited 1 time in total.
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Postby Twin » Wed Jun 23, 2010 12:05 pm

I am in Nebraska!
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Postby TMrox » Wed Jun 23, 2010 12:11 pm

Hello,

I think we were in contact in myelitis.org.

Have a close look at the so called 'sticky threads' here. Located at the top of all threads discussing CCSVI. You will find a lot more detail about research on CCSVI, liberation procedure and progress of people who have been liberated.

I'm also trying to keep the myelitis.org up-to-date with all the news on CCSVI.

Have a look there at the research thread. In particular to:
http://www.myelitis.org/forum/viewtopic.php?f=11&t=5247

You will see that Dr Traboulsee will be doing studies on twins.

I'm collating the most important news about CCSVI in the blog where I'm tracking my progress after the liberation procedure. Have a look at:
http://www.myelitis.org/forum/viewtopic.php?f=78&t=4921

You will find a lot more information in this site, facebook, youtube and google. just type CCSVI or liberation treatment/procedure etc.
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Postby PCakes » Wed Jun 23, 2010 12:20 pm

...further to TMrox.. and echoing the words of 'Cheerleader'.. read read read...learn learn learn.. print out applicable research and protocols and 'go local' ..visit any vascular specialist/ interventional radiogist you can find who will listen.. a lot of people are having good success getting help this way... BUT please if you find a doctor open to this treatment.. do not post their name on any of these sites.. you will learn quickly that there is resistance and many doctors have been shut down.
mum's the word..
..all sounds so foolish but, this too shall pass...
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