cervical spine lesions???

[pixiestixxs3]

I was diagnosised w/transverse myelitis and MS in October 2008 and I've had 2 treatments of steroids that did not work, 2 treatments of plasmapheresis, which helped a bit, but wore off after a few weeks, and 2 IVIG treatments that wear off in about 4-6 weeks.My remissions do not last more than about 4 weeks and I was initially diagnosised w/primary-progressive ms that was not responsive to treatment, but now I've been told it is relapsing-remitting ms which I do not agree with. My mri's look fairly normal, but it has also been suggested that I have Ms of the spine.  I've been having severe Lhermitts sign nerve pain for about a week and it is effecting my left side from the shoulder to the foot. My arm is in constant pain, my left leg below the knee tingles, I have excruciating pain in my bladder w/incontinence, so I have to wear diapers again, and my left foot is completely numb and dragging when I walk. I have to wear a soft cervical neck brace all day to help decrease the pain, but I am still in constant pain, especially when I try to sleep. I take Neurontin and Tramadil for the nerve pain, but it wears off in about 2 hours and doesn't really help. I'm afraid that I might have a lesion on my cervical spine, and I'm wondering what type of complications I may have f/this.B/c my left foot is numb and dragging when I walk, and a few hours ago I started having more balancing problems when I try to walk and I just keep falling down, leading me to drag myself across the floor to get around. I'm afraid that I will become paralyzed again, but this time f/ above the waist. I've alerted my neurologist, and I am waiting for a response f/him and hoping that he will bump up my routine mri f/September, to some time soon. I can't take the pain any more, nor the incontinence which has plagued me f/day one. Right now I am going through at least 10 diapers, and trying to self catheterize has become harder b/c I do not have any feeling in my vagina, so it makes it hard to find my urethra. I don't know what type of treatments, other than medications, that will help alleviate these problems. I am at that point where I want to be catheterized, and I am wondering if it can become permanent b/c I am having some trouble putting on diapers b/c of the pain and weakness in my left arm.  I wake up soaked in the morning, and I'm getting diaper rashes b/c I pee in my sleep every night, but I do not notice it till morning. I've had accidents in public, so I have to carry a backpack w/diapers, a change of clothes and wipes to change myself  in public restrooms. It has gotten to the point where I do not want to go out in public b/c of this. I also get bowel incontinence about a week after the urinary incontinence starts, which makes me more home and bed bound b/c of this. I am divorced and live alone and I do not have anyone to help change me b/c it has become difficult due to  the pain, and my practically useless left arm. I need help getting around and doing household chores, and I am having to start to use my wheelchair, especially in public b/c I am also having balancing problems when I walk and  due to the paralysis of my left foot. Am I going to become more disabled f/this if I do have a lesion on my cervical spine no matter how big it is. Will I have to live in a nursing home for the rest of my life b/c I am truly alone and I won't be able to care for myself.Will this be as good as I get, and be left w/permanent disability f/this. I don't know what is wrong w/me and I need answers so I, and my quality of life can get better.

[Udkas]

Hi and welcome to the MS Forum,

From your post you do sound very afraid and wanting answers for the future which is understandable.  Unfortunately the diagnosed or the undiagnosed will never know totally what our future holds.

I think you should ring your Dr again and try to get a long appointment (or even with a good GP) and discuss your fears and your problems as sometimes just venting can help.

I have been told I have Transverse Myeltis and that my TM is prob reoccuring and I can relate to the pain factor as it seems to be a trade mark of TM.  I have just tripled my dose of Gabapentin and now it seems to be giving me some relief.

Chronic pain can be just as depressing and disabling as other problems, I too can relate to the numbness in your private parts as that is a big issue for me at the moment.  I think the plasma exchange is only used for TM, to my knowledge it has no benefit for MS.

I would try to take each day just as each day, if you have a good friend ring them up and tell them your woes, if they are a good friend they will listen.  Most MS clinics have a nurse that could help with the catheter insertion, i can understand your concerns, losing bladder and bowel function is not pleasant, i too have had issues with this but not as bad you and I too have had some fears about it!

If you go to your neuro and he/she won't answer your questions find a new one, you also need a good GP who can care for you inbetween that has a good understanding of MS.

I am not an expert in the catheter side of things but here in Australia the MS Society has an incontinence clinic attached that does all the assessment etc. and there is a free service of a fully trained MS Nurse who can come to your home  and help with the injections for the MS or with the catheters etc.  I hope you have this service.

Do go to your Dr, try to find some way of relaxing if you can and keep us posted, pain is a horrible thing, I can relate as I never usually get down but of late the pain had got to me.

Take care, thinking of you,
Udkas.

[sllowe]

Hi Pixiestix,

Are you still with us?

Adding on a belated welcome, and hoping the good info above can be a consideration for you and that you don't feel alone.

-shell  

[ShadowsSister]

Hi I am ShadowsSister (DJ) you can call me DJ if you'd like it's shorter..

Thank you Lulu, I also wish that people would break up the long post. the words do run together and are very hard to read....

Pixie, I really had a hard time following your post. but I think you are putting the horse before the cart so to speak. Have you had recent MRI's done on your spine?  This is most important.  I have had a super-pubic Cathe for many years. It doesn't stop the pain, Nothing does. but it is better than diapers, at least for me.

I have never had a remission in the 23+ years that I have been DX, in the third year I was labled as Chronic Progressive, so I have Never been given any treatments and most likely won't be at this late date.  

Over the years they(Dr.) treat me as they crop up, so far Nothing has really worked for more that a month...

Hang in there, try not to stress out... feel free to get in touch with me anytime... I'll be here for you,
Hugs & Prayers going out for you..{{{{~!~}}}}

[Karen99]

Hi.  Glad to see you made it onto the MS Forum.  Have you made contact with your neurologist yet?  

[Lulu54]

Hi Pixiestixxs - you were one of my favorite candies as a child!

Welcome to the forum here at MedHelp - this is agreat community of MS consumers who will be of great help to you.

I also am dealing with incontinence and know how difficult this is.  I am no where near as advanced in the problem as you, but others here are.  

Shadowssister (DJ) has been dx'd for 23 years and has had a suprapubic indwelling cath for years.  I'll make sure she knows you are looking for more information.

It sounds to me like you need to be discussing this possible option with your doctor.  There is no reason for you to continue to suffer with this problem to this extent when there are other options available to you.

Some other women here have had the interstem implant done, which sends signals to the bladder and controls that muscles.  I don't know if that would be an option for you, but these women are very happy that they had this done.  

I hope you will find this forum useful to you - we are a great group of listeners and everyone has an opinion about most everything! :-)

my best,
Lulu

PS if you can, please try to break your posts into shorter paragraphs - the long text runs together and many of us with vision problems have trouble reading that many words ......