It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Lupus Message Board

So Confused And Fed Up...

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 04-09-2008, 12:37 PM   #1
Senior Member
Join Date: May 2006
Location: england uk
Posts: 152
topsy123 HB User
So Confused And Fed Up...

Can anybody please help me answer some questions please. My neuro is is confused as to my diagnosis. I have had numerous things thrown into the melting pot and then disregarded as not enough evidence etc. I originally had a lesion on my brainstem that has now gone. I did collapse originally and thry thought it night of been a tumour or stroke and even MS.
My tests have been extensive in MS, every one coming back negative, apart from a positive lunbar puncture. I apparently have Oligoclonal bands in CSF wich are spilling over into the Serum. My MRI is now clear and I am told I don't follow the pattern for MS, wich is great cause I dont want it or anything bad for that matter, but unfortunatly things are getting worse and they just cant tell me what it is.
I have been tested 4 times for Lymes disease and that has come back negative, along with every other blood test know to man.
I had a letter the other day from my neuro saying the Anticoagulant blood test has come back borderline along with slightly raised polyclonal IgM.
I was sent to see a Rheumy, who dismissed me within the first 30 seconds of seeing him because I didnt have a rash. I pointed out that I have alot of joint pain and chronic lower back pain. I by no means expected him to cure me or say Oh I know what you have, but I did expect some civility or at least courtesy and a chance to tell him whats going on. I have a rash that comes and goes on my neck, I don't believe its of any consequence but worth mentioning. Along with the fact that my body is covered in hundreds of blood spots, some microscopic, some bigger, they don't itch or irritate, but they are increasing.
To list my symptoms would take a life time but some of them trouble me more so than other.
I get terrible brain fog, (thats the only way I can describe it)...My thought proccess slows down when this happens and my speech becomes a bit slurred and less clear. My joints ache, ie, my hips feel like they are gonna drop off, along with chronic lower back pain and recently my knees are starting to give me problems. I get foot cramps, and they are SO SO painfull. I have developed a shuffling gait, this doesnt happen all the time but is becoming more so. I get full body tremors and this tends to happen from knowhere.
I have developed a new symptom, after I eat my symptoms become worse, I get more dizzy, nausea, tremors, weakness etc etc.
I have terrible memory problems and hate to admit it, I get confused and scared. I dont trail antidepressants, I used to, but not any more as I have learned to mechanisms to cope.
The fatige is a big problem, if there 25 hours in the day I still would feel like I have slept enough.
I have acid reflux and take meds for that, I get inflammed eyes and eye infections. My teeth are just a nightmare, I have looked after them and seen a dentist more than just the usual check up, I have had 5 abcesses, and now have periodontitis.
I have developed Asthma, and use steroid inhalers, never had this before.
I keep getting bladder infections, thrush, and my skin is just awful.
I have recently lost over a stone in weight in just under two weeks, because I feel to sick sometimes to eat, let alone keep it down.
I wear glasses and recently had them changed into tinted lenses I have become light sensitive, my hearing is good though spot on. I could hear a pin drop a few miles away, but the flip side of that is its very sensitive to noise and sometimes I cant bear it, get tinitus too.
I get worse before my menstrual cycle, why I don't know. My arms ache, even when I am just folding the laundry.
Now, all of the above sounds like a total hypachondriac. I want to say I HATE this, I dont want to feel like this, I want my life back.
I used to be a fit, healthy positive person, good job and loved life. I am at the end of my tether with Neuros who say lets look at the physcological aspect of this and I am an enigma. As for the physcological side of my life, I am more and better balanced than my bank account.......Even with all this going on...
Does anyone know anything bout polyclonal IgM, and Anticoagulants being borderline and if you have Oligoclonal Bands in the CSF in Lupus. If your MRI is clear or has lesions....
I have no idea what is going on and slowly losing the will to live, the pain is awful and having a wheelchair is just a stage I didnt want to reach.
Any help or advice would be really appreciated....Thanks...

Sponsors Lightbulb
Old 04-10-2008, 03:37 AM   #2
Join Date: Apr 2005
Posts: 311
life_is_good HB User
Re: So Confused And Fed Up...

Judging by your symptoms, and since you've already come up borderline positive already...I would suggest you wait a month and then retest for antiphospholipid antibody syndrome. Usually, it takes two separate positive bloodtests to make a diagnosis, but I think you may be on your way.

Just asked to have your anti-cardiolipin antibodies checked. This test is a pretty good indicator as to whether or not you're dealing with APLS (Hughes Syndrome in the UK).

Last edited by life_is_good; 04-10-2008 at 03:38 AM.

Old 04-10-2008, 11:32 AM   #3
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: So Confused And Fed Up...

I assume from your post you are not in the US so I dont know if you are able to go and get another opinion. There are viruses that can cause your symptoms too. If possible, I would seek a second opinion. Especially in light of the way you were diregarded by the rheumi.

Dallas TX

Old 05-25-2008, 06:00 PM   #4
Junior Member
Join Date: Apr 2006
Location: grass valley CA
Posts: 22
dizzybrunette HB User
Re: So Confused And Fed Up...

Hi, I have foggy head, neck rash sometimes, vision problems, light senitivity,
dizzy when I lay down, under arm pain sometimes, dark circles under eyes, low blood pressure, bruise easily, night sweats sometimes, dry eyes, strong and prolonged reactions to bug bites, had frozen shoulder...

I am 49.. Had all these symptoms about 9 months ago. Decided it was pre menepasol sysmtons. Started eating right, exercising and taking a lot of viatimins and thing got better for about 6 months. I do have discoid lupus and have been tested 3x and do not have Lupus systemic. I also had a MRI.

I now have the dizzy, foggy head back and soreness under arms. My blood pressure is low and I do have some neck spurs. No doctor seems to know what is causing my dizzy head. All I can do is exercise and eat right an try to help myself at this point.
Hope you find your solultion, keep us informed. I do take 1/2 Zanex at bedtime. Good Luck

Old 05-25-2008, 07:07 PM   #5
Senior Member
Join Date: Aug 2006
Location: southeast Indiana U.S.A.
Posts: 248
realisticchic HB User
Re: So Confused And Fed Up...

I have SLE, had an MRI came out normal. As for the oligoclonal CSF, I don't know if it is common in Lupus or not, or if I have it for that matter, sorry. It is important when you get tested for Lyme disease to get tested with both of the blood tests for it, there are two different types, also ask to have your blood tested directly for the bacteria, as the two previous tests check for antibodies to the bacteria, which you may not be making if your immune system is totally wore out, or you are on steroids or immune suppressing drugs.
The rheumy you saw is a butthead. I agree with you, at the very least he should have been civil. I would say your symptoms point to something autoimmune, and definitely warrant some further antibody testing. Please don't give up, a lot of people here can empathize with what you are going through, and I'm sure they are all pulling for you

Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
i am so confused!!Any ideas??? marmar2007 Cancer: Breast 5 12-26-2007 09:55 PM
missing grandad so much, and so confused chelle1980 Death & Dying 2 05-03-2007 03:02 PM
TTC and so frustrated and confused. HELP ishade Trying to Conceive (TTC) 0 09-20-2006 08:57 AM
I"M SO CONFUSED!!!!!!!!!!!!!!!! mtm9138 Lymphomas 4 08-04-2005 02:05 PM
Still confused: Leep & Dysplasia Sadiwest Cancer: Cervical & Ovarian 7 01-04-2005 11:45 AM
Shoreline Can U Help Me with Something I'm VERY Confused SpinalMalady Pain Management 13 11-21-2004 09:05 PM
so confused! help please! cofused1984 Pregnancy 2 11-01-2004 11:14 AM
Anyone know the answer? JimJ Heart Disorders 0 05-01-2004 02:41 PM
im really confused about this guy so_confuzzled Teen Health 9 02-28-2004 06:35 PM
confused... 2ManyQuestions Teen Health 2 12-27-2003 06:50 PM

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 01:03 PM.

Site owned and operated by HealthBoards.comô
© 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!