Posted 20 July 2007 - 08:43 AM
I did get the results on my blood tests on Tuesday, but it seems that you can test inconclusive or even negative and still have sclero or another CTD. Physically, I have at least the symptoms of CREST, although the skin on my feet and hands is very suspect, but my numbers weren't high enough to get an absolute diagnosis of sclero or lupus. The C3 and C4 complements were low, but that was about it for the lupus, and my CK continues to rise, which also might be caused by the FSHD (a form of muscular dystrophy).
Is it possible to keep getting low numbers even though the physical symptoms are worsening? It seems like an awful lot of blood to lose each time for antibody tests that may only turn up in 12% of people on one test, 25% for another. The rheumatologist I saw shut down once he saw the numbers, regardless of what was pointed out during the exam or even what other doctors have reported to him. Many symptoms are very lupus-like, but the doctor was closed to the idea of checking for the CEBV, or anything else for that matter, so I'll wait until I'm sicker before going back it seems.
Well, next month I will be going back to my neurologist for a follow-up about the FSHD and carpal tunnel, and get more electrodes and needles and zaps, oh my! That's cool with me since it will sort out quite a bit. Take care y'all!
Best wishes to my family here,
Posted 20 July 2007 - 07:43 PM
That sounds a bit dissapointing. I hate to hear that you have to get sicker in order to get better...so to speak. I hope that your doctor is still interested in treating your symptoms while waiting out the proof in your blood work. I might consider a second oppinion if not.
Best of luck with the Neuro!
Posted 21 July 2007 - 03:39 AM
It can be so frustrating when you know you feel something but the test doesn't show anything!!! When I first started having symptoms of SOB I let it go for a few weeks. Then it was making me crazy and I couldn't take it so I went to my dr. Unfortunately I had to see someone else in his office and the guy was rude. He did an xray and said he saw nothing and said I seemed to be breathing just fine. I explained to him what I was feeling so he said if it makes you feel better you can see a pulmonologist. A CT was ordered and a month later I was diagnosed with ILD. Obviously the first dr wanted nothing to do with me but I knew something was not right. I always have symptoms before anything shows up on any tests. It is frustrating but you might have to wait this one out before anything shows up. Hang in there.
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Posted 21 July 2007 - 04:12 AM
Thanks for taking the time to give us an update. I know how frustrating this must be for you.
My rheumatologist is one of the top guys in the country. He puts as much weight in the symptoms a person is having as he does the blood-work. A person can have the symptoms for a long time prior to the blood-work showing there is a problem. In addition there is lab error and other various factors.
It's really important for you to have good rapport with your doctor. If you feel you aren't getting what you need from this current rheumatologist, then it might serve you well to get a second opinion.
Just remember that the important thing is to treat the symptoms you have going on, make sure that is happening k?
Hang in there my friend.
Posted 21 July 2007 - 06:05 AM
Thanks for the update! I'm so sorry that you still don't have a diagnosis and that your symptoms are worsening more than improving. I find it interesting the differences between rheumatologists and how they diagnosis. The only antibodies test I had prior to diagnosis was ANA and it was 1:1400 or something like that. It simply indicated an autoimmune. My diagnosis was based on symptoms (a 3 page list that I took in), and the looksy at the capillaries around my fingernails. The polymyositis was diagnosed, again with symptoms and the blood test for the CPK (muscle enyzmes). Three years after diagnosis my pulmonologist did a scleroderma blood panel and it came up negative. However, my adolase was high indicating MCTD. Regardless of the results, my pulmonologist said that there was no question that I had scleroderma. (The only skin involvement is on a few fingers)
So I guess my point is to keep stressing the symptoms. Keep that journal updated and take it in each visit. I certainly hope you get some kind of diagnosis soon so you can start treating some of your symptoms, giving you some relief.
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Posted 21 July 2007 - 07:26 AM
The first test that came back positive last year was the ANA, which was 1:320 with a nucleolar pattern. This year it has dropped to 1:80 w/ nucleolar pattern, which is still technically positive, but this rheumatologist figured that this titre means I don't have any autoimmune issues and never did, although two other doctors say I do. You'd think he would compare bloodwork instead of just looking at one sheet, for example, when the CK almost doubles in 6 months, the CRP jumps from an average of 0.3 for two years straight to 2.8 within a month, the fact that my lungs weren't functioning well for the past year (fevers, painful inhalation, SOB, very noisy at times, plus a recent bout with pneumonia), the ESR is always higher each time, etc., but the numbers just aren't either high enough or low enough for him. If someone tells the doctor that they have "little white icicles and stones" coming out of their face and back, you think that a skin biopsy would be ordered, but no. Odd.
In spite of this, the neurologist I see is very good, so maybe he's the best one to talk to since he actually listens and tends to notice "odd" things. His first clue to the FSHD two and a half years ago was that I was 39 and had no wrinkles or lines on my forehead and nothing to speak of on my face. Frankly, I never would have thought of that as a problem! How many of you have gone through all this frustration with doctors too?? Too many, and I truly sympathize with all of you! Thanks for listening, and I'll let you know how it goes with the next appointment then.
Best wishes and hugs to all,
Posted 21 July 2007 - 03:13 PM
Can you tell me what all is in a scleroderma blood panel? I want to ask my Dr. what the determining factors were for my diagnosis. I wonder if the nucleolar ANA pattern and positive TH/TO are enough for a diagnosis, even if I didn't have several symptoms. I have CREST, minus the S and ILD so I know I have scleroderma, but I am just a very curious person and want to know why.
Posted 22 July 2007 - 03:23 AM
I wanted to let you know that I saw your post, but don't think I could type that much at the moment. When the wrists are more cooperative later, I'll send it along.
Best wishes to you,
Posted 22 July 2007 - 05:36 PM
I wonder if your rheumatologist ever thinks about how doctors diagnosed back before all these fancy tests......maybe symptoms?
It's always the case that by the time my appointments come around, my symptoms have gone into hibernation mode only to wake up again 2 weeks later.
Sorry you haven't gotten any answers yet, and you've waited so long for that rheumatologist appt too.
You seem to have a good attitude about it. Hope you are feeling well.
Posted 23 July 2007 - 01:44 AM
Thanks, and you're right about symptoms disappearing suddenly! I keep the batteries for my camera well charged these days for evidence of the outward symptoms so it's impossible to deny there was or is something happening. Some areas you might not want photographed though...
It's a long learning process with the frustration, and I wish that doctors could have a "satisfaction guaranteed or no co-pay" policy. The financial aspect is somewhat of an issue, especially since I only get a modest disability check each month and the hubby's pay can vary weekly. However, we do have insurance, but there are others on the board like you that are in dire straights wondering where the money for the insurance and next round of meds will come from, so it's much easier in my case.
Thanks again to everyone, and I'll keep up the search for answers!
Hugs, lots of love, and best wishes to everyone,
Posted 23 July 2007 - 06:57 AM
I think that taking photos is a great idea! I thought of that also for the next time I wake up with hands like Shrek. lol.
By the time I saw my dr, all was back to normal, but luckily she knows me well and figured that if I came in to see her, that something must have been wrong. Initial blood tests proved me right. First time in my life I wished I was wrong..lol
Then I saw the rheumatologist a week later and she kept looking at me up and down...so I said...." I know I look perfectly fine, but I swear....two weeks ago I had puffy hands, incredible joint pain from head to toe, and I have this hand that goes numb at night and feels like it's on fire!
Still waiting for results of all the blood tests she ordered. Meantime I am feeling like my old self again and appreciating every minute of it.
Posted 23 July 2007 - 03:05 PM
Shrek hands? Minus the green I hope! My feet tend to do that more than the hands, and if I don't walk funny enough to begin with, that doesn't help. Your statement about enjoying every minute of feeling like your old self sounds like what I said to one doctor last year; all I have is today, and I can't worry about tomorrow. It's odd how you can feel like you've been set on fire and someone is trying to put out the flames with a steamroller, then it all ends like a fever breaking. At least it happens at times, so that always gives me hope!
Take care, and it's nice to be talking to you for the first time here!
Posted 24 July 2007 - 12:07 AM
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