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Diagnosis Finally
NanaJudy6 posted:
Well, finally I am diagnosed with SLE Lupus which is affecting my CNS and my brain I am told. I don't really know what to say right now. I have been grasping for answers for so long and now that I am told what I have, It just won't sink in yet.

I have been put on Plaquinal and dr is hoping to see remission/positive results within 4-5 months. I really just feel kind of numb/nauseated. I am told the lesions on my brain are also seen in lupus and the neurological symptoms I am experiencing are also seen in lupus affecting the CNS. Rheum/immunologist told me he will manage my care along with my neuro and that I will need to keep going to her..He did not tell me a whole lot.

I think he wants to see how I respond to the med before he makes any kind of prognosis. It has been an amazing trip trying to figure out what was going on with me and even tho ther were times, I wondered if I was just going crazy, I knew down deep ther was something wrong so dont ever give up.

I am also told the cognitive issues I am dealing with are also indictive of lupus. So, good luck to me and all of you guys. I gues I will be leaving this site but I wish you all well and God Bless you all..

Special thanks to you, Kim for always being here.

hackwriter responded:

I'm glad you finally can put a name to what ails you and can, at last, get the treatment you need.

But I'm sorry to see you go, my dear. Please keep in touch and let us know how you're doing, won't you?

I wish you all good things. Take care of yourself, my dear.

Jivon2 responded:
Hello Judy,

Thanks for sharing your info. Due to brain lesions, weakness and pain in legs, I was diagnosed with MS in 2007. Both spinal taps were normal.

Prior to 2007, different doctors suspected Lupus because of little symptoms that occured: rash behind ear, sudden spots on arms, and puffy palms, just to name a few. In 2010 I visited a Rheumo because of sudden Raynauds. Just last night I had to visit the ER for steriod treatment to eliminate painful knees and thighs.

Will you please share the symptoms that confirmed your Lupus diagnosis? Why did you visit a Rheumo? Did you Neuro suggest doing so?

Thanks for your assistance, and I hope everything works out for you!
Rory26312 responded:
Hi Judy

You are testament for "sticking to your guns" as the saying goes. At last you have a diagnosis , I cann't say I know anything about it but with the right treatment and care hopefully you will go into remission and recover all that it has cost you.

I too will be sorry to see you go but please check in with us and let us know how you are doing. We will acknowledge the odd vent if it is nessecarry.

NanaJudy6 replied to Jivon2's response:
Thanks to all you guys..I will keep you posted as I am interested in what is going on with you, also.

Hey Jivon, yes I have all the symptoms of MS, ringing in my ears, blurred vision and pain in eyes, nerve pain throughout my whole body, muscle spasms, lower back pain, colon and bladder spasms, leg, ankle and feet pain, burning muscle pain, joint pain (hip, wrists, knees, I can only walk a short distance becasue of the pain in my right hip) feeling of weakness, nausea, abnormal NCS, elevated ANA, elevated white blood count, numerous UTI, pneumonia three times in one year, heat insensitivity, memory loss, trouble expressing my thoughts. I had several old lesions on my brain..

My neuro knew I had an autoimmune but he was not convienced that it was MS because I did not have active brain lesions but all the symptoms therefore, he was convienced it was systemic (I did not agree but who am I) so he sent me to a rheumatologist/immuniologist and he did a mega bunch of blood work and found that all things point to lupus. He says it is affecting my brain with the lesions therfore causing neuro symptoms..

Good luck to you and if you feel this may be going on with you pursue with your GP or neuro to get appt with rheum for peace of mind because even though some of same symptoms, treatment is different.


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