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Discussion Starter #1
Hi everyone, I am new here..
Last year on Oct 29 I woke up with both knees and both hands "arthritic", swollen, red and incredibly painful. Thought it was strange (I have over many years had either sore knees or wrists/fingers.. becoming more often approx 6 months prior to this day), but began my day as usual. Within hours I was unable to walk without excrutiating pain. Not only every joint in my body hurt, but I had incredibly muscle pain.
I went to the Dr's as was so frightened. Prior to this, I had been there due to a strange illness lasting a few weeks (swollen glands, general and severe feeling of being unwell) as well as having a sudden bladder infection (which I never get). I had also suffered intense headaches and migraines daily for 2 weeks.
They took blood tests for RA which came back fairly normal. For the next 2 weeks I did not improve and suffered terribly. I was given very powerful pain relief but nothing helped. They then sent me to hospital to undergo further testing (neurological, I had problems with my eye functioning correctly, as well as numbness down one side of the body for months, and tingling/pins& needles sensations in arms and legs, as well as incredible hot flushes that made me feel like I was burning up inside, and suddenly breaking out in sweats, saturating my clothing or bedding, INCREDIBLE exhaustion that literally stopped me in my tracks after only being up for around 5 hrs - this had started approx 4 or 5 months earlier).
The hospital ran every test possible (suspecting MS) and apart from a few "uncertain" results, an ANA of 1:2560, and some other not-so-important-blood test results being irregular, nothing showed. SLE was negative as were most tests.
An internist came to see me at the hospital and due to my symptoms which also included white fingers & hands at times, swollen, red & painful joints, hair loss (to date I have lost more than half my hair), severe photosensitivity, very dry eyes, diagnosed me with Mixed Cconnective Tissue Disease.
I was put immediately on cortisone 35mg, and voltaren 150mg. Within one day I was finally pain free, however then the problems with my heart started. I was having major heart palpitations, profuse sweating and breathing problems so they had to lower the dose until i was down to 10mg. As the dosage got lower the symptoms started to flare once again.
I was unhappy with this Dr as always left his office feeling confused, so saught a second opinion from a well respected and known Prof. After numerous testing etc, he was unsure why my diagnosis of MCTD was given, as the only positive test results he could see was the ANA (which he retested after I had been on Cotisone consistently for 3 months) which came back at 1:320.
Due to my incredible frustration of still feeling so incredibly unwell (my glands are almost permanently swollen), the exhaustion, hair loss, the pain in my joints and muscles (which btw I have lost, I can barely walk up one flight of stairs - going from super athletic to super-weak), I am about to go to the German Diagnostic Clinic in Frankfurt which is apparently THE place to go when you cannot get a correct diagnosis.

Is there anyone else out there with similar symptoms, yet not showing positive results on blood tests?? i am so frustrated!

My medical history is: severe endometriosis, Polycystic ovaries, early stage cervical cancer, MTHFR (genetic mutation), 3 miscarriages (took 5 IVF's to finally get my miracle son in 2003)..

I have probably left out many things as my memory is also terribly affected now.

THANKYOU for any input, greatly appreciated.

Melissa :worried:
 

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Discussion Starter #2
Sorry, I forgot to mention that with this "attack" (starting prior actually) I began getting very intense muscle spasms and twitches. I still have these.

Also forgot to mention that exactly one year prior to this attack I ended up in hospital due to severe chest pains, couldn't breath deeply, move at all etc without severe pain. They actually thought I was having a heart attack.. Nothing showed up and after being told it was "probably a pulled muscle" (?? aarrrgghhhh!) the pain lasted for about 6 weeks.
 

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Dear Melissa,

I don't have anything useful to say, but ypou are clearly very ill and I wish you all the best in getting a proper diagnosis.
x Lola
 

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Dear Melissa,

I want to say..I am very sorry that you have suffered so much. It can be a real battle to finally get a diagnosis for many. I am sorry, it sounds like you are one of us.:(

I can only say, continue, to have faith in yourself..Keep up the fight. Don't doubt your own sanity. You will get tired. You will be in pain. Keep on..till you get an answer.

Yes, I was ill for years, before my bloods finally showed it. I believe, in my case much of the damage, to my nervous system was already done. However, that is not usually the case.

I was "pegged" as a psychiatric case, and that tended to make all my complaints less legitimate in the professional's eyes.

When my blood finally showed a positive A.N.A. I was told it was sky high..I myself..do not find that my bloods reflect how I am really feeling.

My Rheumy, was one of those Dr.s, that wouldn't see Fibro patients, and because, I was told for 12 years that was the case of my physical pain..I really had to battle, to get in to see him..

This is getting long..so in closing..

Keep fighting!
Believe In Yourself..I Do!

Love,
Sandy
 

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Discussion Starter #5
thankyou so much :)

The frustration and "wasting my life" in this waiting game is awful. We were about to start another IVF when this attack happened, and now I am in total limbo, can't move forward with anything until properly diagnosed and treated..... my family is suffering because of this illness.. I hate what it does to not only me, but those around me.

We so badly want to try for another baby.. and I am getting old!:eek:

*hugs* and thanks xox
 

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Hi Melissa,

With that past history of symptoms and blood results I really don't see why they didnt diagnose you with SLE. Unless of course your doctors will only diagnose it if you have a DsDNA antibody. That's quite silly really as not everyone with Lupus gets that antibody. True the ANA is a screening test for a lot of autoimmune diseases, but with a high titre of 1:2560 and the symptoms you have exhibited most docs would say you have enough criteria for an SLE diagnosis.

UCTD is usually diagnosed when you don't have enough signs or symptoms of a particular connective tissue disease to decide which one it is. MCTD is diagnosed when you meet the criteria for it and have (usually) high RNP antibodies. So they are both bonafide diseases and treated the same way as SLE is anyway. They really should have started you on disease modifying medication :mad:

I want to wish you luck with the specialist in Frankfurt :luck: and hopefully some of our other members here from your part of the world will chime in on this. They may have more idea about how things work over there.

love
Lily
 

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Hi Malissa, Gosh, the long and hard journey that you have been on is unimaginable. My heart goes out to you. ---I wish you all the best luck that you can grab-up, when you go to Germany. Think positive, you are going to find an answer, your are going to come back here and tell all of us, and we will all have a "Happy Malissa's" health celebration. Doesn't that sound like fun? You will do fine hon.
 

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I whole heartedly agree with the others... my other suggestion would be to go in to the next appointment armed with information about blood tests and with symptom lists prepared, photos taken of any rashes/swollen joints, etc. as well as a list of questions you really feel must be answered before you leave. For instance, you may want to ask why you have not already been placed on a disease modifying anti-rheumatic drug (a DMARD for short!).

With the history of miscarriage, you may want to get copies of all old bloodwork to take to the appointment and see if you have been or will be tested for the anti-phospholipid antibodies (& lupus anticoagulant). They are often missed by non-expert physician's.

I often find I can become a bit like a deer in headlights without such a list...
it can help immensely to insure you at least leave with everything said and every question you had going in answered. You may leave and come up with more, but then you just start writing another list.

Keep on - you deserve it. Let us know how it goes!
 

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Discussion Starter #10
you ladies are awesome!

My computer hasn't been working for a few days and to come back and see even more wonderful, caring posts really made my day :) THANKYOU!

Thankyou for all the info and suggestions, I truly appreciate them all! It will take maybe two months to get an appt in Frankfurt (still have to get all my info to them)...

I had full genetic/chromosome tests done regarding the miscarriages.. and the MTHFR was found.

When this attack occurred they ran every imagineable test, only the ANA (1:2560) and a few other strange results came up. All the in-depth testing for Lupus etc came back neg. The original Dr said that it can be typical that they will only show up later, the 2nd Dr was one of those who needs to see the + results to believe it. This is why I am going to Frankfurt to hopefully get an answer once and for all.

just so confusing!

Again, thankyou and I am hoping that you wonderful ladies are enjoying pain-free days :) xox
 
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