Mare,
I didn't want to post this before, but honestly, when you wrote about all your progression of symptoms and now finally having l'hermitte's, I was worried about MS. It is the most common symptom of MS.
demyelinating disease.. Transverse Myelitis is one type of Demyelinating disorder. If you have one or MS you need meds to stop the destruction. Most people with TM will not have progression as you have had that is slow like this, nor will they have repeat attacks, 3% of TM cases have recurring attacks.
You need to get your MD to talk to you ASAP and get the repeat MRI ASAP. The faster they can diagnose you the better.
If it is TM I can help you get info.. I got TM in 2004, mine hit within 12 hrs, and paralyzed me totally from the chest down, if you have TM your case would be considered more "mild".
I don't mean to scare or make assumptions, but at least you can have some info now.
email me if you like ok?
Marieke, 32 LOBPI
worried about numbness in both hands
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: worried about numbness in both hands
Well my PCP called after seeing my report and said I need to see a neuro that something is going on in my spinal cord. He couldn't really tell me anything else. Then the ortho surgeon that I was waiting to see called said the radiologist called him to make sure he knew about there findings. He said that he didn't want to scare me but that I needed to see a neuro right away for further testing.That it looks like I have a tumor on my spinal cord. Its weird last Feb I had an MRI of the brain and neck because I was having headaches, stiff neck and when I looked down it hurt they found nothing 1 neuro and 1 neuro surgeon later and all they found a tiny cyst on my pituatry gland but said it was nothing. I'm so scared I don't know who to trust or what to think I just have to keep smiling so Frankie doesn't catch on I'd hate to worry him. Mare
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: worried about numbness in both hands
Mare, I'm praying for you B-I-G TIME!!
PLEASE tell Frankie something very soon[like" I'm going to have a Dr. check up---name the day---"]. Believe me,Frankie is" tuned in" to you!& all your "non-verbal body language stuff he knowsso wel--something's up, Mare!
HUGS))))
Carolyn J
Message was edited by: Carolyn J
PLEASE tell Frankie something very soon[like" I'm going to have a Dr. check up---name the day---"]. Believe me,Frankie is" tuned in" to you!& all your "non-verbal body language stuff he knowsso wel--something's up, Mare!
HUGS))))
Carolyn J
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: worried about numbness in both hands
Thank You for your prayers Carolyn. Luckly the only thing on Frankies mind is his new XBOX and his new girlfriend plus he just thinks I'm seeing the doctor for my arm for check ups after the surgery. I just don't want to upset him in the past 5 yrs I have had the nerve surgery on my arm, both ovaries removed and my gallbladder I pray I don't need another surgery. My husband thinks I married him for his great medical coverage
Mare
Mare
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brandonsmom
- Posts: 1401
- Joined: Mon Nov 22, 2004 4:43 pm
Re: worried about numbness in both hands
Mare,
Your right !! At Frankie's age that is all that would matter. I would tell him something soon though. Boys are weird and if you don't tell him, he will think that you don't trust him. So your husband thinks that you married him for the great medical coverage. I have heard that before LOL. Will be praying for you and hope you have some answers soon!!!!! GAYLE
Your right !! At Frankie's age that is all that would matter. I would tell him something soon though. Boys are weird and if you don't tell him, he will think that you don't trust him. So your husband thinks that you married him for the great medical coverage. I have heard that before LOL. Will be praying for you and hope you have some answers soon!!!!! GAYLE
Re: worried about numbness in both hands
Just saw the neuro he said I have to get an MRI of spine and brain with dye this can't be done till the 19th and I'll see him on the 25th the wait is going to tear me up. He said it could be MS or a tumor he said it would be right where it controls my breathing and life (just what I wanted to hear ) after he gets the results he will either send me to a neuro surgeon or MS clinic I have 2 hours till Frankie gets home have to go get my crying done
Mare
Mare
Re: worried about numbness in both hands
I told frankie last night that I may have MS or a tumor on my spine he just said ouch that sounds like it would hurt and that was the end of conversation he has no idea what ms is and I have had so many surgerys as he was growing up in his mind its nothing big I just wish he was right. Mare
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: worried about numbness in both hands
I'm glad you told Frankie something, Mare.It will be better for him later.
I'm praying for you.
Hugs,
Carolyn J
I'm praying for you.
Hugs,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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brandonsmom
- Posts: 1401
- Joined: Mon Nov 22, 2004 4:43 pm
Re: worried about numbness in both hands
I am glad that you told him something too. Boys will be boys. I am continuing to pray for you in hopes that this will be resolved quickly !!!! GAYLE
Re: worried about numbness in both hands
Mare,
I've been following this thread with no advice to offer you, so I didn't post anything. I still have no advice, but I will pray for you.
BTW everyone, it's not just boys who will think you don't trust them when they are aware that secrets are being kept. Girls will, too.
Joanie
I've been following this thread with no advice to offer you, so I didn't post anything. I still have no advice, but I will pray for you.
BTW everyone, it's not just boys who will think you don't trust them when they are aware that secrets are being kept. Girls will, too.
Joanie