Has anyone been diagnosed with transverse myelitis as well as APS? I have APS, but wonder if symptoms are actually due to TM.

[haley]

My symptoms began Dec 2005 post flu vaccine. I had serious back and leg pain, nausea and vomiting and then brief but complete paralysis of both hands. I spent most of the next week in bed, lost sense of balance and proprioception (sense of body in terms of space). Also had painful reaction to sound and light and pain in left eye. This is classic for transverse myelitis and yet, no one had suggested it until very recently. I live in the states.

[saralee]

I had TM in the late 80s, was paralized in the legs for a month and still have problems with losing feeling and control of them. I also have APLS but never thought they were connected. Hope this helps a bit.

[haley]

Saralee, I was reading an article from the International Journal of Rheumatology on the treatment of APS and read that there are some clinical presentations of APS that are not caused by thrombosis The list includes a number of neurological disorders including transverse myelitis. I found the article online. It was published April 2010 by doctors, Mehdi, Uthman and Khamashta. I think a lot has been learned since the 1980s. When were you diagnosed with APS?

[saralee in reply to haley]

Dxd in 2001 with APLS. But I have a lot of medical issues. I was dxd with lupus at 17 and attributed most of my problems to that. I will have to try to find that article you posted...thanks.

[Lesley_D]

Hi Haley

I have primary APS - I had TM in 1994 I was paraplegic for 7 years, told at the time they didn't know what was wrong... was I imagining my paralysis!!! yes that's right - Also told I would NEVER walk again - it took me (they wouldn't give me treatment or physio as they said it would not work) yes just likkle me 7 years, to teach myself how to walk, well my first tentative steps, but I walk, work, can't run, jump or hop but hey walking is good - and here I am 17 years on, my feet still don't work so well, I drive a hand controlled car, and have been told only recently the TM is common with APS. I have had a couple of relapses, but not so bad to put me back in the wheelchair.

Keep smiling,

Lesley

[haley]

I am wondering if you have tried to address your illness with diet. I read a lot about taking grains, (especially gluten) dairy, and soy out of the diet. This is advocated by my children's doctor who says that is where you begin if you have any autoimmune condition. Kids have autoimmune conditions (lupus like condition and MS), granddaughter with celiac.

I have already removed dairy, gluten and soy, and stomach aches and bloating and chronic headaches have pretty much disappeared. I no longer take meds for GERD.

I still have what certainly feels like a lot of inflammation in my spine from my burning feet up to the buzz and pain at the back of my head. The medical profession is lagging so far behind in all of these autoimmune conditions. Like you, I have been told that I was "tightly wound", that they understood that I was stressed...blah, blah, blah, They certainly know how to add insult to injury, don't they!

I think I am ready to try the Paleo diet.