Looks like Transverse Myelitis Diagnosis For Me
 

Hi Everyone,
I have been on a diagnosis roller coaster since 2001 and after seeing 5 or 6 neuro's and 4 rheumies and tons of tests it has been decided by my current neuro who actually took the time to review ALL my MRIs, listen and check out every symptom no matter how small I have Transverse Myelitis. All brain MRIs have been clean as was LP but the first Mri I had after my big episode in 2001 showed a lesion at t5 along with a syrinx in the cervical spine whose origin is unknown. It is possible the transverse myelitis may be linked to my Sjogrens diagnosis but that the jury is still out on that one.
I was mis diagnosed with MS for several years as well as fibro, frustrated housewife syndrome and other various and sundry things.
I have been in and out of this forum over the years but it seems like the best fit as far as symptoms and neuro issues go.
The other TM forums are not very active and things are always busy here so I am back.
I am having lots of issues including bladder and bowel and will get to those questions later.
Just wanted to reintroduce myself and say hello :)

Welcome back Houston..:hug:

Thanks Sally! I never recovered fully from the initial attack on my spine and I have some issues which come and go and some have gotten worse and no one to talk to that truly understands the nature of the myelitis beast.

Looking forward to getting to know everyone!
Barbara

I, too, am a TM'er . . . and welcome to the forum. If you are on Facebook, we have a great women-only private page over there where we discuss all the indelicate issues we are faced with on a regular basis! If you would like more information, PM me and I will get you a link.


My biggest frustration is that it doesn't seem to matter what the diagnosis is, they all seem to be treated pretty much the same, with the same meds, which I can't take. On top of TM I have Crohn's, and no colon . . . so sometimes the toilet issues are compounded for me, which drives me crazy. And in addition, I have peripheral neuropathy too. Not diabetic though. I hope you can find information and comfort here . . . :)

Hi Lefthanded,
Thanks for the warm welcome! My TM attack was partial but it left me with a ton of issues and now that I am turning 53 the issues seem to have really compounded. My neuro put me back on baclofen as the spasticity has become unbearable at times and between the syrinx, DDD , scoliosis and myelitis it affects my entire body. He wants to re image me and reasses as there have been quite a few new symptoms. I have a huge deductible so it's hard for me to get all the testing at once.

My most recent LP was clean ( I never had the results of the first one which was back in 2002) and all that neuro said at that time was maybe TM and they would watch me. By that time a full year had gone by since the attack and I had quit going to the neuro who saw immediately after the attack as he was offering no treatment or help at all and I still could not walk normally and had so much weakness. Second neuro was no help either and I quit driving to downtown Houston just to be told they would watch me.

It makes sense now because I think they were waiting for a second attack and then the Diagnosis would have been ms. How they missed the lesion on t5 when I saw the first neuro still baffles me. The radiologist circled it and everything. I don't know if the report never made it to the second neuro or what. I am the one who had all the copies of my films and gave them to my current neuro who went through everything with me and when we got to the T spine he held up the film and said "we'll that's impressive"!

I asked him what he meant and he said I had an attack to the spinal cord called TM. He said clinically I look like ms now but that he needed an LP to be sure and since my brain MRI s have always been clear and the most recent LP he said he will be treating me symptomaticly.

I am so glad you told about the Facebook site for us Ladies. The "downstairs" is in pretty bad shape and I am just now getting to where I can talk to my neuro about it.

I can't imagine what you have been through with no colon on to of TM! That's a double whammy!

Now that we know what happened everything is making a lot more sense but what a rough road it has been getting to this point and I am in very good shape neuro wise compared to many of you. I am humbled by the bravery with which you all face these diseases and thankful for your willingness to share and support.

Welcome Houstonbabs!

I hope you will find what you need here. I know you will find lots of support. And I was hoping that Lefthanded would show up. I see she has.

Best to you,
ANN

Houstonbabs, I'm glad you found your way back. Welcome.