Hello everyone, I am not entirely sure where the appropriate category is for my post, but I will start here (and please forgive my long winded story)....
Prior to a year ago, I have been an extremely healthy person until I was diagnosed last January with having a bilateral vestibular loss (I have no inner ear function) with no known explanation for it. There was some talk about a possible MS diagnosis but that was ruled out.
Just before Thanksgiving, I began to have some numbness in my left arm radiating down to my hand. I went to see my GP as I was again concerned with yet another potential symptom of MS.
My GP suggested that due to my balance issues, perhaps my body had gotten out of alignment and a trip to a chiropractor might help get things back to where they should be. I saw the chiro for about 6-8 weeks and the numbness just increased more and more. I also began to get a "zap" feeling in my spine when I bent my chin to my chest and in the last few weeks, have had some numbness in my legs and the zap in my ankle.
I went back to my GP to find out what I should do from here. She sent me to see an Orthopedic doctor who thought the numbness was due to a problem with my neck and referred me to have an EMG Nerve test and an MRI of my neck.
Today I had the EMG test done which came back normal. The neuro says I have carpal tunnel partially contributing to the numbness. They have an MRI facility in the office so he sent me over to get the neck MRI done.
As I was in the tunnel of torture (HATE the MRI), the technician said as I was just about done that the dr had come in, looked at the scans and wanted to do some more with contrast. So I had the contrast and finished the scan and saw the neuro again.
He told me that much to his surprise, I had an inflamed spine and diagnosed me with Transverse Myelitis. Tomorrow I have to go back for another MRI of my brain (had one done a year ago for the vestibular issues) and a spinal tap. Needless to say, I am rather freaked out and looking to see if anyone else has this issue that can share their experiences with me.
I am frustrated to have been so healthy all of my life and within the last year, seem to have hit a wall so to speak with all of these strange illnesses for no known reason. I haven't had any viruses, been sick or anything that might explain the cause of this problem.
The blood work and prior MRI's have ruled out MS, but this neuro says while the TM doesn't mean it is MS, it could be the onset of the disease.
I am afraid of what the future holds for me. If you read stuff on the internet as far as worse case scenario, it can paint a grim picture. What is the reality of such an illness? He told me he would need to check the fluid in my spine in order to figure out how to treat this, but it would likely involve steroids by IV.
Let them admit you to hospital and pump you full of IV steriods. That greatly increased my mobility and eased some of the pain. I was diagnosed at the end of 2002, only about 4 or 5 years after they finally gave TM a name. If you get your MRI and there are no spots on your grey matter of your brain you do NOT have MS. Dont do like i did and never go back after your steriod treatment. I literally ran away (well limped) and am still running though the pain is hard to run from. GO to your check ups and keep a daily log of your pain and how it runs through your body. Try to keep your pain meds at a minimum so you can keep track of how your body feels, this is very important especially if you have bowel or incontinence issues and you can be prone to infections due to it. This will help you keep track of what hurts when and where for future reference. Doctors like to ask what hurts and how the pain starts and where it runs through and Believe me when you live with pain regularly you tend to not notice what runs where and when, you just HURT. I was in my mid 20's when it happened and it hit like a ton of bricks. I was told it could have been from an innoculation from when i was a kid or a possible link between the Herpes virus and TM. since herpes lies within the spinal column and TM affects it and since i didnt have herpes and had no unusual vaccinations as a kid i knew they were just grasping in the dark. Find a good neurologist, mine saved my life. I just knew i was going crazy. I had pain weeks before my onset of immobility and i just figured it was my workout or me just getting older when i too late realized that my body was trying to tell me something. There is so much out there now about TM on the internet and their was not as much when i was diagnosed. I just wonder why they have not found a cure or a reasoning behind why some of us get it while most people dont. Funding for TM research is usually minimal. Where are our TM infomercials, our TM public service announcements, our TM Funding from our American Government. We fund everything else including fat cat Wallstreet bailouts, where is our TM Funding for research. Maybe if somebody famous will get TM we can finally get some help. Please keep in touch with your doctors and watch out because from what i have read and have experienced years ago, you will have to BEG for pain management. Doctors tend to think that if you arent screaming and writhing in pain you must be faking or exaggerating when like we TM patients know the joint and muscle pain IS very much REAL! Pray. I pray alot it helps, meditation helps too, i rest alot, that helps. If you are in a state where medical marijuana is legal, get it. It will help with some of the pain, not make it go away but dulls it and you will get your appetite back which most of us lose in the hospital and well just make you be okay with the cards you are dealt and allow you to make it through yet another day of aggravating pain and mobility limitations. There are pills they make too for those who dont smoke or want to risk the damage to their lungs. AVOID Narcotic pills, they are very addictive and should only be a last resort because once you start them your pain comes back twice as painful when your pill wears off and you will develop a tolerance to them also and when you are older they wont work like they are supposed to. I hope my rambling post will help and please dont give up. even painful life is still precious. I give thanks every day that at least i am alive to feel the pain. Find your faith, do what you have to do to get relief and dont worry about the rules. The rules doctors tell you about how your pain should feel or how it should run from point a or b or that it should hurt on one side or both, they dont know. No one knows except us that have it.
As it turns out, I have been diagnosed with MS so there is my answer with TM. I had the IV treatment over the course of 4 days through outpatient treatment. It was better then being holed up in a hospital. Its left me a little "touch" shall we say, but hopefully in a few days it will be out of my system.
I'm trying to avoid narcotics, but the pain in my lower back is unbearable I'm not sure right now I have any choice. I don't think its the TM causing the pain but rather the MS and/or from the spinal tap that I had. It has gotten so much worse since the tap that I am in agony.
I had mono as a teenager which my doctor just told me was a form of a Herpes virus. I had no idea it was. Its been dormant in my body I guess all these years and has now taken over.
I'm finding some strong support from friends, friends of friends and virtual strangers. I know that I will get through this, life just has taken a different path for me then I expected it would.
I can't change it, so I may as well go with the flow.
Dear Wilc516 at least you have some answers! They may not be want you wanted to hear, but MS treatments have advanced so far in the last 10 years. I wish you good response to your treatments!
In this world pain medications do so much good - they get a bad rap because of people who abuse them, but there are more people who are given back their lives by using pain medications than people who abuse them. There is a big difference between abuse and dependence and as you start down this path you should try to find all medications , narcotic or not , that will help you live the fullest life possible. I cannot immagine my life without pain medications, I would be completely bed ridden and basically a vegetable needing to be knocked out. Please do not let fear stop you from getting the treatment you may need, your doctors will know best what you should try, but there is no reason to be miserable in your life. We may never be pain free, but we can be more comfortable than without medication.
I'm hanging in there. I can't say I'm looking forward to dealing with the treatments, but I do acknowledge that I need to in order to maintain a normal life. It could be worse so I will take it with a grain of salt.