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
Mare,
TM doesn't go away most of the time. 1/3 who get TM never recover at all, 1/3 recover partially, and 1/3 recover completely. SO as you can see 2/3 of those with TM are left with it's residual symptoms for life, in varying degrees.
TM is for the most part a once in a lifetime occurrence, with 3% (roughly) of those with TM suffering from re-occurrences which can end up leading to MS OR having been mis-diagnosed to start with.
No, mine did not go away. I was completely paralyzed from the mid-chest down and slowly over a year-year and a half I regained some movement and feeling. I am left with a 80% paralyzed left leg, partially paralyzed stomach muscles and inter-costal muscles, no feeling of pain and temperature on the right side, no sense of touch in most of my left leg. I have pain/tingling/burning 24/7 from the mid-chest down, mostly on the left. I have spasms and am spastic, again, left leg mostly.
I take 3 meds for pain, specific ones for neurogenic pain (which is what the tingling/burning... is), I take 2 meds for the spasticity as well as get 7-8 Botox injections in my left leg every 3-4 months. Because of where my lesion was it made my autonomic nervous system work badly/slowly/wrong, and so now have low blood pressure so take 2 meds to make my BP go up. My bladder and bowel do not work either, so have to do stuff for that too.
I am not trying to scare you, as you seem to be "lucky" and have a mild case, but I feel that you should know what this is/can be.
So if you are in the lucky 1/3 you will recover completely, but be prepared that this could last. I am not trying to be a downer, but have had people email me/call me upset b/c their MD told them they would be fine and 6 months later, one yr later they are not. Many doctors say that the person will be fine within 2 years, while this is a possibility, no one can determine this before it actually happens.
IF you feel new symptoms/loss of function or feel symptoms in other parts of your body no matter how minor, go to the MD ASAP and you will need steroids, as it would be a relapse/recurrence.
You want to minimize the damage as much as possible.
OK, enough of my "book". Seriously, you need to ask questions/talk/whatever, email me or call me ok? I deal with this every day and am the co-head of the Canada Support Group. The TMA site has a great mailing list and you can request an info packet to be sent to you.
They also send a newsletter, you can view previous ones online:
http://www.myelitis.org/newsletters/index.html
to become a member and receive info:
http://www.myelitis.org/memberform.htm
Hugs and much luck
Marieke
marieke@myelitis.org
TM doesn't go away most of the time. 1/3 who get TM never recover at all, 1/3 recover partially, and 1/3 recover completely. SO as you can see 2/3 of those with TM are left with it's residual symptoms for life, in varying degrees.
TM is for the most part a once in a lifetime occurrence, with 3% (roughly) of those with TM suffering from re-occurrences which can end up leading to MS OR having been mis-diagnosed to start with.
No, mine did not go away. I was completely paralyzed from the mid-chest down and slowly over a year-year and a half I regained some movement and feeling. I am left with a 80% paralyzed left leg, partially paralyzed stomach muscles and inter-costal muscles, no feeling of pain and temperature on the right side, no sense of touch in most of my left leg. I have pain/tingling/burning 24/7 from the mid-chest down, mostly on the left. I have spasms and am spastic, again, left leg mostly.
I take 3 meds for pain, specific ones for neurogenic pain (which is what the tingling/burning... is), I take 2 meds for the spasticity as well as get 7-8 Botox injections in my left leg every 3-4 months. Because of where my lesion was it made my autonomic nervous system work badly/slowly/wrong, and so now have low blood pressure so take 2 meds to make my BP go up. My bladder and bowel do not work either, so have to do stuff for that too.
I am not trying to scare you, as you seem to be "lucky" and have a mild case, but I feel that you should know what this is/can be.
So if you are in the lucky 1/3 you will recover completely, but be prepared that this could last. I am not trying to be a downer, but have had people email me/call me upset b/c their MD told them they would be fine and 6 months later, one yr later they are not. Many doctors say that the person will be fine within 2 years, while this is a possibility, no one can determine this before it actually happens.
IF you feel new symptoms/loss of function or feel symptoms in other parts of your body no matter how minor, go to the MD ASAP and you will need steroids, as it would be a relapse/recurrence.
You want to minimize the damage as much as possible.
OK, enough of my "book". Seriously, you need to ask questions/talk/whatever, email me or call me ok? I deal with this every day and am the co-head of the Canada Support Group. The TMA site has a great mailing list and you can request an info packet to be sent to you.
They also send a newsletter, you can view previous ones online:
http://www.myelitis.org/newsletters/index.html
to become a member and receive info:
http://www.myelitis.org/memberform.htm
Hugs and much luck
Marieke
marieke@myelitis.org
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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 just want to remind you that Marieke started and is soon to graduate Nursing school and be 1 fantastic RN , and with al that going on with her body.. She is my hero for not letting anything stop her. It does slow her down sometimes, but she doesn't "pause" very long. I don't know how she does it with all those Meds!!
((((HUGS)))) Mare and Marieke,
Carolyn J
I just want to remind you that Marieke started and is soon to graduate Nursing school and be 1 fantastic RN , and with al that going on with her body.. She is my hero for not letting anything stop her. It does slow her down sometimes, but she doesn't "pause" very long. I don't know how she does it with all those Meds!!
((((HUGS)))) Mare and Marieke,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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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
Carolyn, sometimes I don't know how I do it either!Hugs!
Can't wait for Camp 2009 to see you again.
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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
Marieke,
Scott and I both can't wait to HUGGGG Ya!
((((HUG))))
Carolyn J
Scott and I both can't wait to HUGGGG Ya!
((((HUG))))
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: worried about numbness in both hands
Marieke
I marvel at your courage and how you have handled all of your setbacks...
You are living proof "when things get tough, the tough get going."
We can't wait to see you at Camp 2009.
Kath robpi/adult
I marvel at your courage and how you have handled all of your setbacks...
You are living proof "when things get tough, the tough get going."
We can't wait to see you at Camp 2009.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: worried about numbness in both hands
Well I'm back from South Carolina what a great time very relaxing but I still have this tingling going on had to go back to the hospital the day before we left for A BLOOD PATCH after I was leaking spinal fluid from the Tap it was painful but it worked right away they take blood from an artery and insert the needle into the same hole the spinal tap was done and they inject the blood down by the cord and it causes a clot and presto the spinal headache is gone and in my case God what a blessing I've never felt such pain in my head I thought it was going to pop. Anyway I'm taking everyones advice and going to make an appointment at the Centra State MS Center in Freehold NJ The neuro oncologist from PA called she said its not a tumor so now I need to know is it MS or transverse Myelities and even though my PCP said he knows me well enough to know I don't have MS and the neuro at RWJ hospital said its not MS I want another opinion and this place I found online offers 2nd opinions.
I'm so tired of doctors poking me I now understand my sons not wanting to deal with doctors for his BPI. well just waiting for hot water to take a bath my hot water heater went while away and my husband just put a new one in. Everyone have good night Mare
I'm so tired of doctors poking me I now understand my sons not wanting to deal with doctors for his BPI. well just waiting for hot water to take a bath my hot water heater went while away and my husband just put a new one in. Everyone have good night Mare
Re: worried about numbness in both hands
Marieke
Is it possible that the surgery I had caused this TM its so weird that it started after the surgery I keep looking online for info but everywhere I look its says mostly the cause is unknown I found an MS center that also see TM patients but they can't see me till may 1st I just wish this tingling would go away. Mare
Is it possible that the surgery I had caused this TM its so weird that it started after the surgery I keep looking online for info but everywhere I look its says mostly the cause is unknown I found an MS center that also see TM patients but they can't see me till may 1st I just wish this tingling would go away. Mare
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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
Mare,
To be honest they don't really know WHAT sets off an auto-immune reaction, but any stress on the body doesn't help... TM is most often caused by a virus (virus sets off the auto-immune reaction), and other than that they say it's idiopathic, after that, it can be a pre-cursor of MS or set off by other auto-immune disorders like Lupus.
There have been others on the TMA message boards that got it after giving birth (same with MS). SO yes, in a way, surgery could have been a part of it.
But maybe you had TM all along, and the surgery was not needed, as you were misdiagnosed? Or was there another surgery you mean?
Sorry I don't recall.
Hope you are well, ask me anything!
Marieke 32, LOBPI (and TM since 2004)
To be honest they don't really know WHAT sets off an auto-immune reaction, but any stress on the body doesn't help... TM is most often caused by a virus (virus sets off the auto-immune reaction), and other than that they say it's idiopathic, after that, it can be a pre-cursor of MS or set off by other auto-immune disorders like Lupus.
There have been others on the TMA message boards that got it after giving birth (same with MS). SO yes, in a way, surgery could have been a part of it.
But maybe you had TM all along, and the surgery was not needed, as you were misdiagnosed? Or was there another surgery you mean?
Sorry I don't recall.
Hope you are well, ask me anything!
Marieke 32, LOBPI (and TM since 2004)
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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 and Marieke,
I'm learning alot too! My niece has Lupus and it looks like she will have to retire early; she is 47 and a highly stressful job as Engineer at Bonneville Power which I know makes it worse...long hours and is a "troubleshooter" & travels alot too.
Thanks, Marieke, for explaining things in layman's language so I can understand.
((((HUGS))))
Carolyn J
Message was edited by: Carolyn J
I'm learning alot too! My niece has Lupus and it looks like she will have to retire early; she is 47 and a highly stressful job as Engineer at Bonneville Power which I know makes it worse...long hours and is a "troubleshooter" & travels alot too.
Thanks, Marieke, for explaining things in layman's language so I can understand.
((((HUGS))))
Carolyn J
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: worried about numbness in both hands
The surgery I have was for a compress ulnar nerve in my right arm caused by my job they had tried for a year to fix it with therapy cortizone shots but nothing worked but I never had this tingling before the surgery it was 7 weeks after that it started 1st the right arm was numb and tingly then the left then the neck started when I bent it forwrd and now its just about all the time my whole body is tingling I have seen 2 neurologists and have an appointment may 1st with another and none seem to be concerned or feel I need medication 1 I saw so far is an MS specialist and says he's 95% sure its not MS its TM I'm worried that I should be on steriods or something and that if left untreated another month might get worse not sure what to do. Thanks for all your help your better then any doctors I've seen you will make a great nurse
mare
mare
