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Old 07-14-2008, 08:09 AM #1
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Default First FLARE and Transverse Myeletis(sp)?

Hi All,

I have not posted in a long time because things have not been too bad for me and also with the wrm weather I have just been enjoying the summer the best I can,

Last week though, I started to get really bad pains in my right shoulder blade which is not that un-common with me because I had a broken C-5 vertebre in 1999 and that is where the pain was at that time.

This past week I started to get it REALLY bad just like when I had the broken neck......BUT, I have had absolutely NO trama lately and this pain just started to get BAD.......

Well, Yesterday I woke up and the whole area from the top of my stomach all the way to my toes was numb on BOTH sides. I went to the emergency room and they did a FULL mri of my whole spine and head, they THINK I have transverse myelitis, they started me on Solumedral and said I could go home for the other 2 doses from the home health care nurse, they did not have the report to the MRI so they said they would prefer I stay in the hospital but I said no way. I am just numb, no loss of anything that TM reports like bowel or bladder or loss of limb strength........

I told them if ANYTHING get worse I will check back into the ER...

In the meantime I have taken my second dose of SM with the third in about 10 minutes and maybe by THEN they will have a full report on the MRI.........

There is a lot more things surrounding the hospital episode to explain here but I would like an opinion if possible on anyones experiences with transverse Myelitis.

Do you think I did the right thing by rebuking the hospital stay?

I am only 15 minutes from the hospital so getting back there is not a problem if things DO progress...

Thanks all and I hope you guys are doing ok as OK can be

Joe
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Dxd RRMS 12/23,06, Copaxone 2/07 to 9/07 - Rebif 10/07 to 7/08, BAD flare with Transverse Myelitis & Pancreatitis.....,9/08 Pseudo Cyst!!!! and another TM attack. Started Tysabri 9/22/08 - 10/21 Allergic reaction to Tysabri, SSDI Approved 11/14!! Continued Ty 11/17 with a Pre-medicate. Solumedral 12/11-12/13 Ty #5 Jan 12th!
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Old 07-14-2008, 10:34 AM #2
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So sorry about your attack, Joe.. I hope the IVSM does the trick for you. I know nothing about TM, but I hope you don't have it..

Rest and let the steroids do their thing and let us know how it goes.

Feel better soon..
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Old 07-14-2008, 10:47 AM #3
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I would agree that you have Transverse Myelitis, caused by your lesions in your spine.

Transverse Myelitis, like ON, can be a stand alone dx, or it can be as a result of another disease process. In our case, it's due to the MS.

The first time I experienced TM was 1991, and it was from a lesion in my T-spine. I was completely numb from mid-breast (literally cut in two there) down to my toes. Numb hardly describes all the feelings (and lack thereof), and that attack was severe.

The second time was in 2003, but it was from a new lesion in the C-spine. This time the same symptoms affected right up to the tips of my ears, and in my hands, but I went through basically the same progression and recovery. This attack was all encompassing though, including my internal organs, and even breathing became difficult.

The third time (which may not have "officially" been TM) was in 2007 , probably from a new C-spine lesion in C1 (I never had a MRI). This time I was affected from the top of my head to the tip of my toes, but not all at the same time (contrary to prior attacks). This was not as severe as the last two times, but it dragged on for much, much longer. It was due to an untreated infection though, and once I treated it, I began to improve almost immediately.

The reason I told you all that is, although it can be substantially different each time, it is my experience (and there are not too many people on the forums who've had this!), that certain things do happen pretty much the same way each time.

Firstly, Transverse Myelitis is not nice, and feels terribly scary, no matter how mild, moderate or severe it is.

They will be able to tell which lesion is causing the problem, either in time (by watching what happens over the next 6 weeks), or by your MRI results. I did not have a MRI until I had recovered, but my docs knew exactly where my lesions were based on where the numbness ultimately stopped.

These attacks progress over 4 - 6 weeks, no matter if you take steroids or not. What that means is that what you are feeling now, plus more, will likely escalate in the coming weeks. During the following 4 - 6 weeks, you will likely progressively improve, starting with the areas that were affected first by the attack. I am telling you this as it can be frightening, and because it is "normal" for things to get worse before they get better; bowels, bladder, pain, etc.

Steroids are NOT known to affect the progression, speed the healing, or have any influence over your final outcome. Because of that, I have never been treated with steroids during my attack, however, over the years I've run across others who have. Using them did not substatially change anything.

As to whether you should go in the hospital . . .

I have never gone in the hospital during my attacks. It certainly feels as though that might be the best place for us (from our perspective at the time), but it is usually not necessary. You are just at the start of this, but depending on where the lesions are, and how much the attack escalates, it can affect your internal organs; heart, lungs, voicebox, swallowing, etc. NOTE: it is "normal" for your bladder and bowels to be uncooperative, but this is not a concern if you find ways to manage these difficulties. Let me know if you need any tips in this regard.

In retrospect, I probably should have gone in the hospital at one point, for a week or two . . . but I didn't and survived well. I would go if it got that bad again though.

You will be able to tell if you start having difficulty that isn't "sensory" or "motor" symptoms, so I would reserve the option for the hospital until IF that happens. NOTE: that only happened during one of my attacks. Otherwise you will likely spend the next 6 weeks in hospital, and it will not change the outcome.

Attached is a good link on Transverse Myelitis:

http://www.ninds.nih.gov/disorders/t...s.htm#41903234

BTW, did they check for infection while you were at the hospital? Did you have a UTI test, etc.? That is how EACH of my attacks have started (infection of some sort).

Also, do you have brain lesions, or only spinal?

The good news is that I have recovered as well as I could hope for from all three of these attacks.

BIG hugs to you, Joe.

Cherie
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Old 07-14-2008, 10:46 PM #4
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SallyC
Thank you for responding, I will definayely keep you posted on my outcome.....:-)


Cherie,

THANK YOU SO much, I appreciate you taking so much time and energy to explain to me all about your previous plight....It really gave me so much insight on what I am going through. I have becaome a person that does NOT take what the doctors say as LAW and I have to be convinced by SOMETHING that would make me believe what they are saying......I have gotten the exact same vibe about what THEY are trying to tell me to do.......i could actually spend TOO many days in the hospital that are not necessary and I probably would have done it if it were not for other things I have going on in my life that I NEED to stay OUT of there to see.....

Your words to me are SO helpful I can not say...Thank you much....:-)

I have thought the same things as you are saying, I have a tough road to get through and I have also read up on TM and I see that there are exactly the same things that you describe and I have been preparing myself for that and preparing myself for certian aspects of it......

I am not one to get blindsided by this stuff we go through so I do enough research to get me by, i do stop when things get too scary for me to handle at that specific time though, but later I go back when I can handle more about it....

Yesterday I got to the point that I felt I should post something and ask a question........

I did not expect such a great response as I got from YOU........

I work a full time job where only 3 of my most trusted co-workers know of my MS but if management found out I had it they would find SOME way to get me out of there.....

I know that TM can come right along with MS but it is nice to know that it doesn't HAVE to be associated with MS and that is also a good thing for me in the workplace......If and WHEN I get too bad to function normally and work I can take the time off from work to get this taken care of and then go BACK to work and not have a dx of MS on me.......

Cherie, you are a great person for writing me what you did and I want to say thank you! rom the bottom of my heart, (which is numb right now) but i am hopeful that things are going to get better with TIME.......:-)

I have not checked out that specific link you said in the post be when I have a chance tomorrow I will definately.......

I am PMing you this in case my post does not get seen by you.....But the worst thing that can happen is that I say THANK YOU twice for your words......:-)

Seriously, THANK you so much!!!

I am sorry you went through all that and it is a total shame that some of us don't get a perfect life with no afflictions like some do.......

Some of us DO get them and choose NOT to share there problems with others but YOU did and I will say Cherie once AGIN I can NOT express my utmost appreviation for that......

I will let you know how all this pans out in the coming weeks......

Thanks again Cherie....

:-)
Joe
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Dxd RRMS 12/23,06, Copaxone 2/07 to 9/07 - Rebif 10/07 to 7/08, BAD flare with Transverse Myelitis & Pancreatitis.....,9/08 Pseudo Cyst!!!! and another TM attack. Started Tysabri 9/22/08 - 10/21 Allergic reaction to Tysabri, SSDI Approved 11/14!! Continued Ty 11/17 with a Pre-medicate. Solumedral 12/11-12/13 Ty #5 Jan 12th!
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Old 07-14-2008, 11:55 PM #5
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Phew, Joe . . . I was really worried about you all day.

What I said is hard to hear, and might have sent some people for a loop. I know it would have done that to me initially. HOWEVER, no one told me what to expect and I really, REALLY wished they would have. Better the devil you know, if you know what I mean?

I was not on the forums the first time it happened, and even when I went on the second time, there weren't many people who could relate. It's a very lonely, scary feeling.

Good thinking on using the TM dx as the reasoning for missing work, should you need to. BTW, it is very unusual to experience this more then once in a life time, with or without MS, so at least that's one good piece of news.

This IS going to be a difficult 10 - 12 weeks, Joe, and there may be times along the way that you get discouraged. Please feel free to contact me by PM if there is anything that concerns you, and of course keep in touch with your GP (or Neuro) too.

My approach to this disease is "Plan for the best, but prepare for the worst". I'm glad you are thinking ahead to your work situation, and you may find you need some support at home too. You will get through, day by day, even if that's all manage to accomplish for a while.

Plenty of REST, ok?

Cherie
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Old 07-15-2008, 06:08 AM #6
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Thank ou once again Cherie, I will I am sure keep you informed, you really made me feel that I know what to expect now, part of the worry always comes from what is unknown and you have helped me to get a bit of insight on that.

I am sorry you had to go through this with no warnings at all, these boards are great and although you were not on here when this happened to you then you could have gotten some insight. You sound like a very strong person and I applaud you for your strength and I DO thank you from the bottom of my heart as I said earlier....:-)

10-12 weeks huh..........wow, I don't think my financial situation can handle that one.......:-(

But when I get better I will make it all back right?

Thanks again Cherie, thanks for the {hug} and the concern and I will be resting a lot I am sure...:-)

Joe



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Originally Posted by lady_express_44 View Post
Phew, Joe . . . I was really worried about you all day.

What I said is hard to hear, and might have sent some people for a loop. I know it would have done that to me initially. HOWEVER, no one told me what to expect and I really, REALLY wished they would have. Better the devil you know, if you know what I mean?

I was not on the forums the first time it happened, and even when I went on the second time, there weren't many people who could relate. It's a very lonely, scary feeling.

Good thinking on using the TM dx as the reasoning for missing work, should you need to. BTW, it is very unusual to experience this more then once in a life time, with or without MS, so at least that's one good piece of news.

This IS going to be a difficult 10 - 12 weeks, Joe, and there may be times along the way that you get discouraged. Please feel free to contact me by PM if there is anything that concerns you, and of course keep in touch with your GP (or Neuro) too.

My approach to this disease is "Plan for the best, but prepare for the worst". I'm glad you are thinking ahead to your work situation, and you may find you need some support at home too. You will get through, day by day, even if that's all manage to accomplish for a while.

Plenty of REST, ok?

Cherie
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Old 07-15-2008, 09:22 AM #7
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Quote:
Originally Posted by JoeMac View Post
10-12 weeks huh..........wow, I don't think my financial situation can handle that one.......:-(

But when I get better I will make it all back right?
No, you shouldn't have to miss nearly that long of work (10 - 12 weeks) . . .

As I mentioned, things tend to escalate. I was able to continue working the first time for about 2 weeks, then I went through the more difficult period over the next 4 weeks. After that, I was able to recover while working, over the NEXT 6 weeks, but I had a management job so there were not many physical demands. Quite honestly though, working is all I accomplished for that several weeks because even mental stress is wearing.

I was not fully recovered at 12 weeks, but I was definitely functional. The "full" recovery took 18 months, but I coped reasonably well in the meantime.

I continued working for the next 12 yrs, with very little intrusion from the MonSter, and by all accounts, should NOT have had another TM attack. That is rare indeed!

During the second attack, my job was slightly more physically demanding, even though it was mostly just walking. I wasn't able to walk at all, or commute/drive, so I had to go off fairly early in the game (within a few days). Even if I had used a wheelchair, I was a single mom, so I didn't have the leisure of then coming home and doing nothing, which likely made a difference to my recovery.

It took 4 weeks before I contemplated work again, and then my employer set me up to work from home. I was on flex-time, and my kids were at daycare till 5:00 every day, but each week I was able to accomplish a little more then the last. Probably by week 8, I was working full-time hours, however it was definitely intermittent, on my own schedule, and still from home.

Bearing in mind, I had now had MS for a minimum of 12 yrs, and probably much longer (based on prior symptoms), but I never did get back to the office after that attack. I was able to keep working from home for the next 2 yrs, but since I was left with some troublesome symptoms from that ordeal, and continued to have regular mini-attacks, that made it difficult to be reliable in a work environment. I went on disability in 2005.

I am going on 18 yrs into this now, and most of the time no one would know there is anything wrong with me. There is, of course . . . but my lifestyle is now very quiet and with little demands, so I can pull off a good face when I have to.

I mentioned the 10 - 12 week window so that you have a light at the end of the tunnel. That period is the worst you will go through though, and even though I knew that the second time, I still got discouraged at times. It just seems awfully long to feel so rotten . . . but it really helps to mark it off on the calender, kinda' like an inmate does.

Cherie
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Old 07-15-2008, 10:25 AM #8
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My goodness Cherie, you did go through quite the ordeal and being a single mom on top of it all........I commend you and the strength it took to get thrugh TWO of these.....

I am now waiting for my doctor to call me back, she called while i was in the shower and I called right back and that was 2 HOURS ago.........:-(

You say that steriods will not stop it from spreading then what would be the treatment if ANY?

I have to go back and read your first message again it is hard to take this all in at once, ya know what I mean?

I want to keep thankng you because each time I read your messages it gives me more and more hope......

Thank You

:-)
Joe

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Originally Posted by lady_express_44 View Post
No, you shouldn't have to miss nearly that long of work (10 - 12 weeks) . . .

As I mentioned, things tend to escalate. I was able to continue working the first time for about 2 weeks, then I went through the more difficult period over the next 4 weeks. After that, I was able to recover while working, over the NEXT 6 weeks, but I had a management job so there were not many physical demands. Quite honestly though, working is all I accomplished for that several weeks because even mental stress is wearing.

I was not fully recovered at 12 weeks, but I was definitely functional. The "full" recovery took 18 months, but I coped reasonably well in the meantime.

I continued working for the next 12 yrs, with very little intrusion from the MonSter, and by all accounts, should NOT have had another TM attack. That is rare indeed!

During the second attack, my job was slightly more physically demanding, even though it was mostly just walking. I wasn't able to walk at all, or commute/drive, so I had to go off fairly early in the game (within a few days). Even if I had used a wheelchair, I was a single mom, so I didn't have the leisure of then coming home and doing nothing, which likely made a difference to my recovery.

It took 4 weeks before I contemplated work again, and then my employer set me up to work from home. I was on flex-time, and my kids were at daycare till 5:00 every day, but each week I was able to accomplish a little more then the last. Probably by week 8, I was working full-time hours, however it was definitely intermittent, on my own schedule, and still from home.

Bearing in mind, I had now had MS for a minimum of 12 yrs, and probably much longer (based on prior symptoms), but I never did get back to the office after that attack. I was able to keep working from home for the next 2 yrs, but since I was left with some troublesome symptoms from that ordeal, and continued to have regular mini-attacks, that made it difficult to be reliable in a work environment. I went on disability in 2005.

I am going on 18 yrs into this now, and most of the time no one would know there is anything wrong with me. There is, of course . . . but my lifestyle is now very quiet and with little demands, so I can pull off a good face when I have to.

I mentioned the 10 - 12 week window so that you have a light at the end of the tunnel. That period is the worst you will go through though, and even though I knew that the second time, I still got discouraged at times. It just seems awfully long to feel so rotten . . . but it really helps to mark it off on the calender, kinda' like an inmate does.

Cherie
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Dxd RRMS 12/23,06, Copaxone 2/07 to 9/07 - Rebif 10/07 to 7/08, BAD flare with Transverse Myelitis & Pancreatitis.....,9/08 Pseudo Cyst!!!! and another TM attack. Started Tysabri 9/22/08 - 10/21 Allergic reaction to Tysabri, SSDI Approved 11/14!! Continued Ty 11/17 with a Pre-medicate. Solumedral 12/11-12/13 Ty #5 Jan 12th!
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Old 07-15-2008, 11:03 AM #9
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Steroids have never proven to be of assistance, not in any trials or from what I've gathered talking to others, but you have already done them so that's ok. Like I said, I know some people do them anyway, because they want to do "something" . . .

It's neurological pain and sensations, so I haven't really seen anything that helps significantly. Some people try Baclofen, Neurontin, even narcotics and valium. I am trying to remember what another lady I know said she was taking . . . but I'll have to look that up again.

Personally, I took only Naproxen, 500 mg X 2 per day. That was during the worst period, and only seemed to take the edge off the back pain. I am very sensitive to meds though, so my doctors carefully weigh out the pros and cons before they recommend anything to me.

Admittedly, and thankfully, I have a very high tolerance to pain, ever since I was very little. My first indication of pain is MAJOR "mental confusion", then I have to try and analyze what it is that is hurting. This has its advantages, however when pain is not managed properly, it ultimately becomes unmanageable. By that time, will take much longer to get it under control again.

Neurological pain is a different kettle of fish though, and I FELT it.

I don't have any magical answers, unfortunately.

Let us know when you hear for sure if it is TM.

Cherie
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Old 07-15-2008, 11:48 AM #10
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Ok, I looked back through her emails and she got on Lortab; brand names: Anexsia, Dolorex Forte, Hycet, Liquicet, Lorcet, Lortab, Maxidone, Norco, Polygesic, Stagesic, Vicodin, Xodol, Zydone.

http://www.drugs.com/lortab.html

She said that she did not feel it was helping with the pain, but it helped her relax somewhat anyway.

Cherie
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