Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Question About Bloodwork


  • Please log in to reply
8 replies to this topic

#1 Katie

Katie

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 12 November 2007 - 08:12 AM

I will be as brief as humanly possible. Well, for me at least!

At 8: started having problems with Raynaud's. Mom and grandfather have/had it too. Its there for sure, but not as extreme as some I've heard. Never really get blue, just white (holding cold can, etc. and skiing is just no fun at all). Main effect is that I hate cold weather.

At 22: got mono and had lingering problems with fatigue. Had trouble working for a while. Low fevers. Informally diagnosis Chronic Fatigue. Got better gradually, and especially so after first pregnancy, during which I felt great. Afterwards, felt weird/weak at times but nothing to extreme. But I did get nipple vasospasm (HORRIBLY painful) and still have to wear a shield to breastfeed (with second baby). Nipples would blanche really bad.

Second pregnancy: sick a lot. Tired a lot. Cold that wouldn't go away.

After second pregnancy, in March: having trouble doing stairs, but not anemic, no thyroid problems, B12 fine, etc. Falling down when I'd get up in the middle of the night. Weak. Getting a lot of what doctor says are cherry angiomas (a few more every week). Maybe related to breastfeeding hormones?

In July: Had weird TIA episode. Given history, doctor was worried about MS. But MRI was fine, as was limited EMG and pretty thorough nerve conduction studies. Whole right side of my body felt weird. Tired, felt like I was having trouble breathing, worried about heart. Dizzy for a couple of weeks. Doctor said "I don't know" but I had tested positive for strep twice in 2 weeks despite antibiotics (with fever of 99 but no sore throat) so he chalked it up to that.

I can function, work full time and have kids, but I feel run down and like I'm getting worse. Feel like my quad muscles are going. Felt bad enough that I went to ENT (but ENG was fine) and to rheumatologist.

When rheumatologist examined me: told me he suspected connective tissue problem, UTCD or MTCD, particularly lupus because of a partial molar pregnancy I lost at 20 weeks before my first successful pregnancy. Took note of esophogus problems (sister had 10 cavities at age 30 from reflux, dad has had esophogus stretched), TMJ, Raynaud's, fatigue. Sort of had me thinking that he was on to something, because his interest was piqued by my physical symptoms (I have mild right foot pain with exercise that had been chalked up to RSD, but nothing shows on X-ray, etc. Took Vioxx a while, now I'm just not as good at working out). Also: I pop constantly. Especially my feet. Like many things I've listed, it could be nothing, I realize, just the way I am.

So I go back thinking that I will finally get some sort of diagnosis. But my bloodwork was PERFECT. B vitamins, thyroid, a couple of lupus tests, SED was fine, ANA was fine, I'm not sure about scl but it sounds like he ran everything. So he just sort of dismissed the physical findings that he'd gotten me focused on once he saw TOTALLY normal bloodwork. Wouldn't even give me NSAIDs for my foot pain because I'm still breastfeeding. So it was another wasted appointment. Every time I go in, doctor is concerned about my symptoms, forgets the details of my complaints and tries to reassure me. primary care physician was convinced I had a thyroid problem based on symptoms and physical exam and even the rheumatologist said he couldn't feel my thyroid. But tests (including panel done by primary care physician) came back perfect, high if anything.

Since then my right wrist has been acting up, feels gummy and sometimes painful when I do certain tasks. Feel like I can't bend back all the way, but it may just be tendon or ligament related. It's the outside, not like carpal tunnel. My hands are SO dry all the time. Especially between fingers. But this may just be carrying kids and washing my hands too much. I don't seem to have shiny/tight skin. Everything that is wrong could be explained away. It's the weakness/fatigue that are really bugging me the most, and I just feel like something is wrong. I'm not going back to the doctor any time soon unless I'm running a fever.

Has anyone ever had bloodwork like this, and still be diagnosis with a connective tissue disease? If I'd had + bloodwork, I think I would have been diagnosis and had more investigative tests done. My symptoms would warrant it. I suspect something autoimmune b/c of my past history of chronic fatigue, and the fact that my sister had ITP as a child and IBS as an adult.

Sorry to be so long winded.

Thanks!

#2 Katie

Katie

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 12 November 2007 - 08:34 AM

Wanted to add a few more things:

I had HORRIBLE constipation with second pregnancy. HORRIBLE. I could eat fiber all day long and barely get things moving. It has persisted since I gave birth (9 months now) and is sometimes much, much worse. This is pretty new, I never really had to think about it before. Not sure if this is related, but it is really annoying. I have to think about it every day and eat fiber, drink water, avoid cheese, etc. to make sure everything stays on track. I eat 2 fiber tabs a day, drink tons of water, plenty of fruits & veggies, cereal for breakfast and still struggle.

Right before I got pregnant, I could have SWORN that I had a bladder infection (get them a lot). But no. So I was diagnosis with Interstitial Cystitis, or however you spell it! I bought Prelief. But got pregnant a month later, and the issue disappeared (at the time, I had to give up a.m. OJ and avoid sodas, tomatoes). Well I thought I had another bladder infection recently, but, again, nothing. So I guess it sort of flared again.

I've always had problems with my foot, but my right hand only recently started to feel arthritic/painful. I can manage but there are just too many things going on at once. Also, I noticed that I have three cherry-angioma like things on my lips. But, they are small, not all visible like the telan. things I heard about with CREST. Don't think I've ever had calcinosis either. But I am increasingly covered in little red dots. But not "oh my god" numbers of them, but I see new ones every week! I have telan. on my calves and on my feet, but I figured that was b/c of pregnancy. And I have some around my nose, but not too too bad. I do have a bigger red dot on my nose, and one on my upper lip, that are somewhere between cherry angioma and telan., if there is a difference.

Thanks again.

#3 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 12 November 2007 - 09:58 AM

Hi, Katie. Don't apologise for being too wordy. I know you are frustrated with all the new conclusions you are starting to put together, but try not to panic. First of all, it is possible to have negative blood results and still have an autoimmune disease. Many of us in this forum do not have positive markers. For us, clinical symtoms are needed to make a diagnosis. You say you are not going to see a doctor again, but perhaps you just need to find the right one. Diagnosis under these circumstances can be difficult. You may find some helpful information in our Difficult Diagnosis section.

The members here are helpful and supportive and I am sure you will find some of your questions will be answered. Welcome and hugs to you.


Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 Katie

Katie

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 12 November 2007 - 04:12 PM

Thank you so much. That answered my basic question--it is possible to have negative SED and ANA and still have an autoimmune problem. The rest of that was unnecessary but a relief to get off my chest! Thanks for the forum & opportunity. I definitely suspect limited or diffuse sclero or systemic (one of those!) that is still mild but I mainly just want more energy and not to feel so weak.

All of the doctors I have seen in the last 6 months (primary care physician, rheumatologist, ENT, neurologist) have announced my great test results as though I will be so relieved, and haven't even addressed follow up, because I am fine, right? Same person you were so concerned about, same symptoms, but their magic ball says "healthy" so I just have to ignore my symptoms.

My last rheumatologist said his door is open, and I can come back, but there is nothing he could diagnosis or treat. I really had him pegged as the one that would figure it out. He said he's heard of an ANA negative lupus in the literature but it probably doesn't exist (like it's a unicorn or something). I didn't mention sclero because I knew he'd probably think I was just digging for a diagnosis, and he was pretty firm that, if all of the tests he ran came back negative, it was not a connective tissue disorder.

I do plan to go back to the doctor eventually, but I just need a break from getting my hopes up only to be told again that I am fine because the tests say so. Argh.

But thanks for the info!

#5 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 12 November 2007 - 05:41 PM

Katie,

Sorry to hear about your symptoms. Watch out for any symptoms which might indicate any organ involvement. It is not that uncommon to have involvement of lungs (difficulty in breathing), stomach, esophagus (GERD), etc. My case was reverse, I had negative blood results, but positive ANA as well as high SED rate. It took doctors over five year to diagnose and by the time number of organs were compromised.

Take care!
Kind regards,

Kamlesh


#6 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 13 November 2007 - 12:03 PM

Hi Katie,

I'm positive I'm not the only one who can sure understand, as well as relate to the frustration you have described in your quest for answers, pertaining to the fatigue/weakness.

Four years, after I underwent test upon test... and feeling as though I might well be a hypochondriac (even though I felt worse as time passed), I finally went to my internist, who knew something was terribly amiss, but referred me to a gastrointerologist,, because my doctor admitted "it was way over her head"... even though she was one of the best internists in our area... stilll is! In MHO, she was smart to send me to this dr, because he was able to give me a clinical diagnosis.
Though I was in shock for long afterward, I was grateful to know I wasn't a hypochondriac after all. My husband knew I wasn't well, too, but was also very frustrated, due to the long period of time from the start to final diagnoses.
(as a matter of fact, I saw the gastro on Friday... (my sister-in-law had a colonoscopy and I was her ride)... who remembered me and that he had diagnosed me with Sclero!
He asked how I was doing and that he was glad to see me!

The link jefa put up is very helpful, for one of many reasons. Many doctors don't like to put a formal diagnosis in your file, if it might affect insurance coverage.
Nevertheless, knowing is important, in that the patient can begin the proper treatment.

I wish you the best and hope you continue to post here. You are so much better informed/knowledgeable than I, when I was first diagnosed. A computer is a wonderful window to information, thanks to forums such as this!

Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#7 Katie

Katie

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 15 November 2007 - 07:17 AM

Thank you so much for all of your responses! (and reading the book I wrote!)

I guess, at this juncture, I just have to decide if/when to see a second rheumatologist. The first one I saw was so nice, but because my bloodwork showed nothing, that's the end of if as far as he is concerned. I went there without a referral from my internist (didn't need one) but I think my internist probably thinks I am overreacting, etc.

Whatever is wrong migrates (which makes me seem even crazier). My knee had been bugging me, but now it's not. Now it's my wrist, which is actually getting visibly swollen, and I can't bend my hand back toward my body except a tiny bit without pain. And now that it's cold, my hands are getting dry and cracked again. Isn't it sad that I'm excited I have something visible to show to my husband, to say, "hey, I swear, this is for real!" Ha! Anyway, maybe I'll go back in January. I do worry about heart/lung involvement but I'm just not having symptoms so extreme that I would feel justified in requesting further tests, when my blood work is fine. I kind of have a hunch that once I get a cold, that won't be the case anymore, so maybe then I'll protest a little more loudly about the fact that I've been getting new mild chest pain with colds (that I have never before gotten, I never had lower resp. problems befor). But it may just be that my immune system is awful. I am trying to make peace with the uncertainty! Luckily I'm too busy to worry about it too much!

#8 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 15 November 2007 - 07:32 AM

Hi Katie -

Welcome to the Sclero Forums! I'm a bit late for advice, but I'm sure glad you've joined us.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 17 November 2007 - 05:45 PM

Hi Katie, Welcome to the Forums. I too am so sorry to hear that you are having so many issues with your health. I do understand how difficult and frustrating it is to know that something is not right....but no one can find out what. Sometimes time will tell all, and other times you just get better! I hope for your sake, things really do just get better. Please keep posting, and in close contact with your doctor if anything changes, it is better to be on the safe side!
*WestCoast*

********