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mamakaz
01-15-2012, 08:21 PM
Hello Every one,

i have been ill for about 6 years now, after fighting with my Doctor i finally got to see a Neurologist and Rheumatologist, i have a small hole in my spinal chord which looks like Copper/b12 deficiency although my bloods come within "normal" range, and high inflammation neg ANA. I have all the usual symptoms of Lupus and then some.
I have always got low blood pressure and low body temp.

I got a letter from my Rheumatologist who has diagnosed me with Lupus Like Syndrome, i just wondered if any one could explain this to me as my next appointment is in April.

I had a funny turn last night i just go completely weak and shake my legs and arms feel like lead, my back and the back of my head go numb and tingle and i feel very spacey.

Also having trouble sleeping tonight as everything hurts, even going to the toilet feels like a trip up Mount Everest!

thanks for reading, kaz, x

tgal
01-15-2012, 08:34 PM
Hello Every one,

i have been ill for about 6 years now, after fighting with my Doctor i finally got to see a Neurologist and Rheumatologist, i have a small hole in my spinal chord which looks like Copper/b12 deficiency although my bloods come within "normal" range, and high inflammation neg ANA. I have all the usual symptoms of Lupus and then some.
I have always got low blood pressure and low body temp.

I got a letter from my Rheumatologist who has diagnosed me with Lupus Like Syndrome, i just wondered if any one could explain this to me as my next appointment is in April.

I had a funny turn last night i just go completely weak and shake my legs and arms feel like lead, my back and the back of my head go numb and tingle and i feel very spacey.

Also having trouble sleeping tonight as everything hurts, even going to the toilet feels like a trip up Mount Everest!

thanks for reading, kaz, x

Hi Kaz,

Welcome to WHL. We are really glad that you found us. "Lupus like syndrom" simply means that the doctor believes that there is some kind of autoimmune issue going on but can't name it yet. Since there are 63 autoimmune diseases and there is really no single test for them, it can take a long time to sort out.

Did he put you on any medicines? If so, which ones? Dealing with Autoimmune diseases is kind of a "hit and miss" sort of thing. Since each persons disease affects them differently each persons treatment ends up being a little different as well. You and your doctor will have to work together to find the right cocktail of meds to keep your disease at bay.

Hope this helped a little. Once again, welcome to the WHL family! We are glad you came

mamakaz
01-15-2012, 08:46 PM
Wow what a quick reply, thank you tgal, x

the only meds i have at the moment are Lansoprazole, Amitriptyline and Tramadol, at my last visit to the reumy i had an injection of Medrone in the buttocks and for a month i felt great, but yesterday all my symptoms have come back with a vengance,

kaz

tgal
01-15-2012, 09:04 PM
Wow what a quick reply, thank you tgal, x

the only meds i have at the moment are Lansoprazole, Amitriptyline and Tramadol, at my last visit to the reumy i had an injection of Medrone in the buttocks and for a month i felt great, but yesterday all my symptoms have come back with a vengance,

kaz

Doctors often use either a medrol shot or short term use of a steroid as a test of sorts for AI (auto immune) disease. The majority of the time AI disease respond well to steroids since they reduce inflammation and AI disease are known to cause inflammation in the body. Some doctors even believe that if steroids don't help it is a good sign that they are not dealing with an AI disease at all.

I am sorry about the problems with the doctor. So many of us have dealt with that. Trying to get a firm diagnosis is often like banging your head against the wall. The good news is that you are no longer alone. We will be here to go through this with you.

magistramarla
01-15-2012, 10:03 PM
Hi Mamakaz,
Welcome to WHL. I'm glad that you have found us, and I hope that you soon find out which AI disease (or diseases) is causing your Lupus-like syndrome.
Hugs,
Marla