Hi to all
I am new to this site and wondered if anyone could give me advice or opinions, I am a 3o year old female, i have been ill on and off since i was 13, after a long haul i was eventually diagnosed with M.E, i eventually got well again but not to the point where i could say i felt great. i have been in and out of hospitals and A.E more times than i wish to remember. I was unwell around 8-9 weeks after the births of both of my children, with severe exhaustion, dizzy/faint feeling all the time weekness digestive problems such as ibs lactose intolerant, but somehow i always seemed to manage to bounce back and get on with life, but not actually feeling very well, but managed to eventually get to the point wehre i was working part time, at college 3 days a week, taking my children here there and every where, that was until Oct 2008, one morning i woke up with vertigo i stood up i fell down, i tried to stand up again i fell down, that lasted all day but left me with balnce probs, i have always suffered dizzy spells but this was something else, over the next few months my health gradually deteriorated and slowly i had to give up more and more and more so by mid jan i was totally bed bound. and had to move 80 miles away so we could have family support, my husband has had to give up work which puts a great financial starain on us, i have various symptoms which may or may not be linked some of which seem to be be very significant in SJS but i would never have gont to the doctors with these maybe thats why diagnosis takes so long my symptoms are
Severe and constant exhaustion
Feel very dizzy, but the more tired i am the more dizzy i am
Weakness
Body feels heavy all the time
Tinitus
Dry mouth and lips, but not alll the time
vaginal thrush every month
lactose intolerence
Irretable bowel
Poor body tempreture control, sometimes so hot sometime so cold
brain fog and poor concerntration
difficulty sleeping
low level of b12 (108) is being trated with b12 injections
I am sure there are many more symptoms i have but like i said brain fog and poor concentration.
Some recent blood test my New GP had done indicated something wrong with certain antibodies, which said was ENA and RO antibodies i think, she said the likely cause was sjogrens syndrome but i'd have to go see a rheumatologist for further tests and diagnosis.
Because i ahve these antibodies does this mean i definately have an autoimmune disorder or are there other reasons why the blood can contain these antibodies. half of me is releived if they have found out what is wrong with me and treatment may help but i also feel a little worried about a life long condition.
Any opinions or information anyone can give me would be very much appreciated
Katie x
Hi Katiebo612,
Let me welcome you to the SJS World and family! Please do look around the board as there are tons of topics that you might be interested in, and I often come just to read (learn more here than from the doctors ;)). If you don't find what you're looking for with the search engine, don't be shy, and ask away as there is usually someone about that might have an answer.
I'm sorry that you're having so many problems, but I'm glad to see that you've got a strong primary, and you'll find that is a heck of a plus! When do you get to see a rheumy?
I have a question or ten (call it brain fog this morning!), but what is M.E.? Have you seen an ENT about your dizziness maybe? Or have your thyroid tested lately?
Yeah, a lot of your symptoms sound very familiar to me (I'm not in the medical field, so I can't say if you have SJS, or anything else), but your rheumy will be able to tell you what you might have developed. For me, it's been a frustrating journey as I'm sero negative (for everything, and my Hashimoto's was diagnosed by a biopsy, go figure). A lot of your symptoms can be a part of SJS, but they can also be a combination of things, it's so hard to say (it's no wonder that AI's drive doctors goofy!).
Again, welcome and I hope that you feel better soon.
Take care of yourself -
Patze
Thank-you for yor reply patze,
M.E is a chronic condition otherwise known as Chronic fatigue syndrome i was daignosed with it when i was 13 and mis diagnosed again a year ago, i have a fantastic doctor now, my previous doctors were ok, but just kept doing the same old routine tests over and over again and suprise they were ok i was eventually diagnosed with M.E which i feel is a bit of a cop out. we moved house about 80 miles away so had to change doctors which i can honestly say was the best thing i ever did, i put of registering for the first six months of living here as i had always been told its M.E and nothing they could do for me and i was not well enough to go to the surgery, (i am currently pretty much bedridden) within 1 week of first seeing the doctor she had diagnosed my Vit B12 deficiancy which the nurse was also coming to my house every other day to administer B12 injections, and the autoantibodies test soon followed. I have had my Thyroid tested and that was fine all test so far are fine apart from B12, ENA an d Ro antibodies i am waiting for Periatal Cell antibodies and intrinsic factor as these could be the cause of My B12 deficiancy. I will have to wait around 6 weeks to see the rheumalologist, and am trying to find out as much as i can before i go, i have read about people who test negative in their bloodwork but do actually have the disease but would about if your bloodwork is positive? does that definately mean you have SJS??? I have seen a neuro about the dizzyness and he called it a peripheral vestibular disorder but he was also the one who diagnosed the M.E so who knows.
Just remembered a few more things i should have added to my symptom list
Palpatations Fast heart rate (sometimes)
regular sinus problems
constant stuffy dry feeling in nose
Dry skin and a little rashy after bathing
frequent urination most days
weight gain
hypoglyceamic symptoms (If i don't eat reguarally)
Floaters in right eye
often achey
Sorry for the long post just i am, new to this and would like to know as much as possible and i feel i find out more from real people suferring the same than studies and statistics
Wow KATIEB0612, many, if not most of the symptoms you've written are mine as well. I've been diagnosed with Sjogren's Syndrome and autoimmune overlap (because I have Lupus symptoms as well). Most of my major autoimmune issues began after I started having children. A few months after the birth of my last baby at the end of 08 my body felt like it was falling apart. It didn't take long to get diagnosed but I still don't feel well the majority of the time. I did have some success in feeling better while taking medrol (a steroid) but I can't stay on it.
I'm hopeful that the slower acting medicine (plaquenil) will begin to work if I give it more time (up to a year).
I'm so sorry to read you're mostly bedridden. Hopefully when you begin taking medication, you'll be able to get back to some of your old activities. It's hard to go from being active to feeling like it's a monumental effort to leave your couch. I'm having a flare up myself as I type this. Since I'm too tired and achy to get up, I've got my sons piled up in the bed with me watching cartoons. They're easy at this age, I put on the Disney channel and they become zombies. LOL
Take care and it's nice to meet you!
Hi Katie and welcome to Sjogrens World,
As the others mentioned, your symptoms sure could be considered sjogrens or they could be something else as well.....autoimmune issues are just so hard to figure out....that's why doctors sometime run so many tests and take so long to get answers for us. It is good to hear that you have an appt with a rheumy set up and hopefully you will get a good doc who will treat your symptoms regardless of what the test results say.
One thing I do want to add.....if they ran an ENA to test your antibodies, I'm guessing that your ANA came back positive which says you have some thing autoimmune going on in your body. A good resource online to refer to if you can get copies of your lab work from your doctor is http://www.labtestsonline.org/
Hope this helps some and good luck at your appt!
Hi Katie, I wish I had more answers for you but I am just relatively new to this as well. I did want to extend a big WELCOME to you :)
Hi to all and thank-you for all your replys and for making me feel welcome. I always feel like i am the only person in the world to be suffering, well in my world anyway, i think until someone suffers in this way they can't possibly understand what it is like, but after having a look around this site, i am not alone and there is alot of help and support for me
xxx
You've had a terrible time of things! I hope that your doctors are able to help you soon.
As for your blood tests, SS-A/anti-Ro can point to SJS (http://en.wikipedia.org/wiki/Sj%C3%B6gren%27s_syndrome). It is also possible to have positive test results but never develop Sjogren's. Your symptoms are the most important thing when it comes to diagnosis. There are people w/ positive blood work who are perfectly healthy, and there are people with normal blood work who are very sick.
In the meantime, I recommend that you ask your doctor to cc you on all lab work so that you don't have to rely on remembering all of the confusing information, test names, etc. while you are trying to be present in a conversation with your doctor.
Thank- you dragonflyC, i think that was the question i most wanted answering, "can i have the positive blood work but not have the disease" Half of me hopes i do have the illness so at least i finally have an answer and possible treatment but on the other had i am really scared of a life long illness and the further health problems it can carry, i guess only time will tell, when i get to see the rheumatologist.
I feel so unwell and have spent so long in bed i just need answers, it is hard to get on with life, when you just don't know for sure what you are dealing with, i feel like i am missing out so much on life and more importantly my 2 beautiful children :(