New Here! Just need some advice please

[JoT]

First of all, a great big hello to you all style_emoticons/<#EMO_DIR#>/smile.gif I have been undergoing tests for MS for acouple of years now due to on going symptoms of Optic neuritis, cramps, numbness in arms and legs, pain and some strange brain sensations that make me walk like I am drunk!!! To date, my MRI has been clear apart from a colloid cyst but my Lumbar puncture showed oligoclonal bands in the CSF but also in the blood suggesting a systmic disease NOT MS. In addition to this, I have a strange rash along the bottom of my nose and slightly accross my cheeks. I have aHUGE problem with the sun, only ten minutes with full sun block and I get awful itchy blisters on my arms back and chest. I have had knee joint pains since I was about 15 although xrays show nothing wrong. I have various aches and pains in my legs and mainly arms. I have had two miscarriages and my son was born at only seven months after a disatrous pregnancy. A friend has suggested that MS can mimic Lupus and that the symptoms I am presenting with could in actual fact be lupus also due to the fact my CSF and blood showed this bands. I would be very grateful for any help or information you could give please. I have been to Dr's last week and now asked that he write to my nuerologist and perform an ANAtest. Many thanks and I look forward to hearing from you style_emoticons/<#EMO_DIR#>/Thanx.gif

[wifajax]

Hello JoT! style_emoticons/<#EMO_DIR#>/foryou.gif

Welcome to the boards! This is a wonderful place for support and encouragement as you go through the process of figuring out what is going on.

You are taking to the right steps by seeing your doctor and asking for an ANA and other tests. Remember that an ANA by itself will not tell your doctor that yes, you do have lupus, or no, you don't. But it is the usual first step on the path to diagnosis. If your ANA comes back positive, your doctor will order more specific tests. If your ANA comes back negative, it does not rule out lupus completely, but makes it a more unlikely diagnosis.

I hope that information helps. Good luck with your tests, and let us know what you find out.

Terri

[MAMAJOE]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi, i had a stroke like episode 2 years ago which affected my vision an mri showed lesion on the brain and i was told it was probably ms. I was tested for ms and it came back negative so they said it must have been some kind of mini stroke a few months later i tested positive for lupus. Because lupus mimics so many illnesses we are often misdiagnosed but i have been told that ms is the one most often. Hope this is of help to you and that you get properly diagnosed.
best wishes
mamajoe
style_emoticons/<#EMO_DIR#>/foryou.gif




LIFE MAY NOT BE THE PARTY WE HOPED FOR
BUT WHILE WE ARE HERE WE MAY AS WELL DANCE!

[Joandublin]

Hi JoT style_emoticons/<#EMO_DIR#>/flowers.gif

...and welcome to the boards. style_emoticons/<#EMO_DIR#>/flowers.gif

It sounds like you have been through the mill with testing and procedures over the years style_emoticons/<#EMO_DIR#>/hugbetter.gif

Its a very good idea to have your ANA checked. As Terri says that is the first step to take.

I think with your history of miscarriages you should also be checked for anti-cardiolipin antibodies (antiphospholipid Syndrome). Here is a link from this site which explains a bit more...

http://www.uklupus.co.uk/anticard.html

Lovely to meet you and if you have any other questions just post away! The members here on this site are wonderful and very supportive. They will be only too glad to share their experiences with you.

Take care
Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[alobreto]

Hi, JoT! style_emoticons/<#EMO_DIR#>/wink.gif
And welcome to the forum! style_emoticons/<#EMO_DIR#>/smile.gif

There really isn't much I can add to what has been said, but I did want to welcome you and extend a hand in friendship.

You've been through a lot, and I hope that your child is doing well despite the difficult pregnancy.

Again, welcome to the forum! I wish you well as you pursue the answers to your questions.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[bugsy]

http://i12.photobucket.com/albums/a210/bugsy04jo/welcometatty.gif

[JoT]

style_emoticons/<#EMO_DIR#>/Thanx.gif Hi to you all again and thank you for all your kind replies. I am at the moment suffering like many of you with the sun. My blisters are looking pretty yuk!! and it makes me feel so poorly and aching after only a short time out. I was wondering is it possible for tests to come back negative even if you are not experiencing a flare or will Lupus show no matter what your body is doing at the time???. Also, whilst I accept none of us are Dr's but has anyone else had a lumbar puncture, been diagnosed with Luspus and had the Oligoclonal bands in the CSF AND the blood. Many thanks again for your help and advice
Jo xx style_emoticons/<#EMO_DIR#>/biggrin.gif

[Lily]

Hi JoT and welcome,

There's a proportion of us in whom MS was our first suspected diagnosis and our bloods took a little while to catch up, along with other symptoms that pointed more towards Lupus. My blood picture came together slowly and whilst they were testing my bloods with a full Lupus panel and my urine every two months, the results did not always reflect how I felt. There were times I was obviously quite ill and my ANA showed nothing, and other times I considered I didnt feel to bad (well not too bad for me anyway!) and my bloods came back positive. No rhyme or reason, but my symptoms all along were obvious. Other bloods besides ANA can help them track decline also. Particularly complement levels when CNS disease is a factor, also ESR in some.

You will need to be under the care of a Lupus savvy Rheumatologist to get correct diagnosis. Ideally in the end once I got a decent Neurologist via the Lupus doc (in my case he's an Immunologist not Rheumy) together they put the pieces of the puzzle together. They both work out of a University teaching hospital and there were a few brains trying to sort it out in the end.

My lumbar puncture was negative for MS but my C4 dropped below normal , then followed by C3 levels in blood which kept dropping, prior to that I had only had an ANA of 1:40 which is classed as negative in a lot of circles. It did over time go to 1:80 as I was getting sicker, then 1:160 ( still not terribly high) during my diagnosis. However everything else was what unfolded the story, like you I started having much more obvious skin problems (can you see a Dermatologist for this - it can be helpful in the long run) , my urinalysis had a long history of blood, casts, and protein coming and going, and my MRI showed brain lesions but not specific as to what they were (brain lesions accumulated as time went by) .

All our stories are different though, lupus does like to mimic. I started being treated with Plaquenil as they were sure of an SLE/Sjogrens crossover. After about my 4th MRI (with contrast) they caught vasculitis in my brain, this clinched it for them (as far as cerebral involvement) because my CNS symptoms had evolved from non specific to a very clear picture of Vasculitis - classic text book symptoms and signs. In the end my diagnosis was SLE (with CNSV) with Sjogrens as a secondary condition

All along though they had been checking my anticardiolipin antibodies and Lupus anticoagulants as they can mimic MS, however in my case they never came back positive and I dont have antiphospholipid syndrome (APS). Make sure they investigate that angle for you. Some here have had that overlooked when it was the cause of CNS probs all along.

We have had at least two women here in whom the spinal fluid showed oligoclonal bands, both had CNS lupus.

Good luck in your investigations and being in experienced, informed hands will be everything in your case. If you live near to a major university hospital I would suggest going there even if you have to travel. Let us know how you get along.

love
Lily