Newbie recently diagnosed

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Newbie recently diagnosed

Postby romewhip » Thu Mar 27, 2014 11:28 am

Hi all-
I'm new here, just diagnosed with SM a couple of weeks ago and I've been doing the things you all have probably already been through- trying to learn what this is, figuring out a course of treatment, trying to figure out how to live with it, and what's next.

I have a syrinx in my thoracic spine, I don't know exactly where or how big it is. It's not small, but it's not huge either. I fell off a horse and then started having trouble with my legs, they felt heavy. Once I got my diagnosis and started researching I figured out that it's not the fall off the horse that caused it, I've been struggling with the symptoms for a long time. At this point I've lost about 50% of the function of my left leg, about 25% of my right leg, and lost some strength in my hands. I have a major issue with regulating my body temperature, unlike most I'm always burning up. I sweat buckets when it's not even warm out- I may not be much of a lady but we're supposed to glow, not drip.

I still work full time, I use a cane for balance since my left foot isn't giving me the info I need to walk without falling. I am very lucky to not have too much pain, what I have is manageable. I have been taking Cymbalta for a while for fibromyalgia, and maybe this helps. I also take meloxicam daily, and a heavy duty painkiller only when needed (maybe 1x weekly). I have no idea what my future looks like, due to a complete mess up with my current neurosurgeon I'm looking to change neuros and kind of start over. Neither one wants to do surgery right now because I'm not bad enough yet, and as someone who is very surgery phobic I'm fine with that.

I hope to read through and get some guidance and suggestions for living with this, I hadn't ever heard of it until my diagnosis.

Jenny
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Re: Newbie recently diagnosed

Postby birdlover3 » Wed Apr 02, 2014 9:49 am

Sorry you have a syrinx. You are doing a great thing for yourself by educating yourself. Staying relaxed and stress free is very important. Also eating right and exercising is important too. When your syrinx is new, it is very hard on you. After a while, you will accept, which will make it a little easier, but you'll never quit trying to get better and learn new coping skills.

If you post a question & no one answers, give it a few days & someone should check in to answer your question. Please keep us posted about how you are doing.
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Re: Newbie recently diagnosed

Postby texassyrinx2 » Sun May 18, 2014 9:35 pm

I have not posted in some time but tonight the pain has me up and I thought what the heck lets see what others with sm are up to. Sorry about your dx but now you know. In my opinion no one can say for sure what exactly your story will hold. Only time will tell. For me I was Dx 1991 and I have 2 sm one at c4-t1 and another now from t6 -t12. Both 6-8 mm in size. I say now because over time mine have expanded and elongated. The good news is I was functioning most of the years I have been dx. I have had episodes or flair up that have been bad. I don't say this to scare you but to give you hope because as bad as they can get mine always pass with time. For me the big problems started in 2007 with seizures and chronic unrelenting pain. Don't lose hope I have learned to deal with this as well. I had a long and successful career as a molecular biologist working at top rated institutions until 2008 when finally I had to admit I was a danger to others in the lab. The seizures are really what took me to my lowest. I do collect Ssdi and I also had always had a personal disability policy. I knew this thing could one day take a toll. I was smart to do this. You can get a disability policy with sm you just have to survive the two year waiting period for pre existing. That may have changed with Obama care. I am not sure. I was lucky I got my Ssdi approved in 30 days and collected my first check 6 months later. I know I am rambling but I want you to have hope. To know you can have a bright and happy future. I have been married to the same man for 32 years. He had taken a lot of grief from me when I am in pain. I have to wear a diaper and I still have seizure problems. But remember I was dx 23 years ago. I fell from a ladder and landed on my back and neck. At first I could not walk for weeks and then the swelling went down and everyone said I was fine. But I knew something was wrong and kept insisting on an MRI. Finally I got one and the c spine syrinx was found. A year later the t spine syrinx was dx. Today I do walk fine. I can be wobbly at times but no real problems even though my my legs and feet are very numb. I will use a cane from time to time.

I too have temperature issues. Too hot too cold too hot again! Take heart and know you are not alone. I wish you well. I did have surgery for the first time a year ago that was to decrease the c spine syrinx but this week I was told it did not help. I can't get down about it or it would consume me. So I choose to think of this disease as my best buddy. It is the one thing in life I know will always be with me. I must sound crazy. Sorry but I hope you find ways to look forward to life and enjoy every moment. Don't let this thing define you. Yes the pain may at times be bad - do get good doctors, check out alternative medicine, eat right, get mild daily exercise ( we put in an 18')above ground pool and added a heat pump to keep it at 90 year round. I walk in it and some days it is all that gives me relief. I am not a big pill person so I only take 1 300mg ER tramadol and my seizure meds daily. I use meditation and prayer. I rest when necessary and I enjoy life. Even with the diaper! I think I hated that the most. But I have adjusted. I did go to see dr Oro in Colorado and he is excellent. Be well be happy. I hope you find the answers you are looking for.

In Texas and content with life!
M
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