new & muddling through

[snoopygirl]

    I am new to this board, new to autoimmune disease. I am still in the process of finding a diagnosis but according to my rheum scleroderma is looking like a real possibility. My symptoms include reynauds, tightening & contracturing of my rt hand secondary to tendonitis? (least the rheum said today, “you've got some significant tendonitis in there” & rx'd a medrol dose pack), I've got a dark red patch on my lt cheek that doesn't go away, swallowing dificulties, swelling of my calves & hands, a few dark patches on my calves & darkening around my collarbone with very small patchy white areas, stiffness in my hands, elbows & shoulders, fatigue, cardiac arythmias-paroxysmal sinus tachycardia which had been under control since 2000 but has flared up mightily in the last couple months.  That's the gist of the sx's. I am frustrated w/the lack of dx. He wants me to go for a swallow study. He said my labs were mostly normal but that doesn't mean I don't have something going on. He said scleroderma could cause my sx's but “I'm not saying you have that” he says. Says he will call me after getting the test results. oh, & on the lab it he said my vit D level was low & suggested taking a calcium/vit D supplement.

So here's my big questions-if this is sclero, is there anything I can do now to keep from losing function? Are the steroids ok to take or will they cause other probs? (aside from the typical emotional/eating probs they cause-I have a hx of asthma & have been on steroids many times so am familiar w/them but not in the sense of how they will affect scleroderma-kwim?) He says sclero is hard to dx as there is no one bld test that can say “yes you have it” & it can present differently in different people.

I don't want to waste another minute. I've been seeking a dx for quite a while. A family doc told me that I had too many sx's & that “you're only here on a short visit & we're not going to look for any zebras today. You'll have to limit your visit to 1 or 2 complaints & if you want to discuss the other symptoms you'll have to make another appointment. I'm just going to do a basic exam today if that's all right with you.”  Needless to say, I'm a bit skittish of doctors these days. He is just one of many docs who have blown me off. He found a murmer on my “basic” exam & said “that's a cute little murmer you have there but you already knew about that, right?” When I said no he got miffed & said, “Well I guess I'll have to send you to a cardiologist” The cardiologist wasn't any better. his NP seemed very concerned that my HR jumped 20-30+beats just changing positions & that it clipped along @ 122bpm just sitting on the exam table-he even asked me if I'd seen a rheum to be worked up for connective tissue disease (@ that time I was due to see the rheum for the 1st time in 2wks)but then when the cardio came in he listened to my heart for a few seconds & said everything looked fine that the murmer was probably a benigh functional murmer & nothing to worry about. He did do  a 24hr holter monitor but said it was fine. I have an apt w/a new cardio on Monday.

I don't know where to turn or what to do but I know i don't want to sit on my laurals. Any info is appreciated.  I live in Austin, TX. Does anyone know of good docs to treat scleroderma there?

I'm just looking everywhere I can for some answers & some relief.

thanks for enduring my venting….

snoop

[MaryP]

Use this link to request a doc

http://www.rbfbb.org/view_topic.php?id=54&forum_id=1

I know it's a really hard thing to hear “we know you have something going on, but we don't know what”. I think you're a smart girl to move forward now. There is a ton of information on this bulletin board and at roadback.org, should you choose to use AP. Good luck and keep asking questions.

[Maz]

Hi Snoopygirl,

Have just dropped you a private message, which you'll find by clicking on the “1 new message” above.

You may also find this scleroderma story from Woman's Day magazine, included just today in the Spring Edition of the Road Back E-Bulltein, to be an inspiration!

http://www.womansday.com/health/12875/i-didnt-recognize-myself.html

Peace, Maz

[Kim]

Hey Snoop,

Welcome to this board….you won't get the run-around here, nor will you ever be dismissed. 

Your symptoms are almost identical to how mine started and after having similar reactions from doctors, the first thing I had to come to terms with was I better get on top of this because these doctors were no help and only costing me precious time.  Once I read the books on Dr. Brown's work I was convinced that was the treatment choice for me.  I fired the so-called specialists and took the protocol to my PCP and asked if he'd help me with prescriptions and tests.  He read the protocol and had no problem assisting, but really couldn't offer much advice.  There are no AP doctors in my area so this got me started on the AP quickly which is so important as these changes come fast and furious. You should also know that many people with Scleroderma have normal blood tests and symptoms have to be considered in the diagnosis.  If there is an experienced AP doc in your area you are very lucky, indeed.

This program is not a quick fix, but does work!  Within a few months you will probably notice your symptoms not progressing anymore, and then slowly (sometimes painfully slowly) reversing.  Now is the time to read and ask questions because it is different for everyone and you will learn something from each person.  You'll also learn it is up to you to lead your doctor and decide when adjustments are necessary.

Whatever you decide to do you can always ask questions here and hopefully someone can ease your fears.

Wishing you the best…….kim

[Goodwife]

Snoop,

welcome to the board.  Good luck in your search for a definite dx.  Your symptoms do sound like sclero. or lupus, or an overlap of both.  Like others mentioned, bloodwork sometimes can be negative for these, but the symptoms still exist.  Read everything you can on this site and proceed from there.  Ask any questions – someone can help you.  My hubby has Sclero. and had somewhat mild symptoms, but quickly worsened, before we found AP.  Now, over a year later on AP, he is doing wonderfully.  But it was from NO help from our rheumy.  We were our own doctors, our GP was open minded enough to write scrips for the mino and monitor bloodwork.  So far so good.  We just take it one day at a time and resign ourselves to the fact that we will probably always be dealing with issues, and that he may have to be on AP forever.  We'll see.  Best of luck to you, take care,

[snoopygirl]

thank you all for the encouragement. I'm on my 2nd day of steroids & taking ibuprofen round the clock but still no relief for the tightness & awful pain in my hand. I can't even stand to have my 2 yr old squeeze my finger!

Questions: Does sclero cause vit D deficiancy? (sp) He said my vit D was low.

                   Does sclero cause tendonitis? Is the tendonitis what causes the             pain/tightness in the hands?

Things are pretty crazy round here this wk & I haven't had much time to do research yet. Still muddling through. I go for my UGI on the 9th & the rheum said he'd call me w/the results.

One other thing I've noticed is my heart will pound & head ache w/the rushing sound of a freight train in my ears when I exert myself or bend down, sometimes it's not even what I'd normally call exertion-it happens when I walk up the single flight of stairs of my house that my heart will either race & pound or just pound really hard but not nec. fast & I will get the headache as I mentioned above. Could this be signs of pulmonary hypertension? Or am I just reading way too much? I mean, it's been going on long before I started reading but now i'm trying to put a reason together for why it's been going on. KWIM? I stupidly tried a water aerobics class last night & I kid you not, since the class I have had a horrible headache & cannot go up the stairs or bend over w/o literally feeling like my eyeballs are going to pop out of my head & my ears are going to explode. It's not like a migraine-I'm experienced w/those too. This isn't like that. In Dec of last year I had an episode where my rt pupil blew. It was 100% fixed & dilated yet I was walking & talking-was hosting a party in fact! Which really freaked out the staff & the EMTs that transported me from the smaller outlying hospital to our trauma center. The docs couldn't figure out what it was & the MRI/CT showed nothing so they gave me Torodol & sent me home. It took about a day for my pupil to go back to normal.  Anyone have any thoughts? I keep freaking out now & checking my pupils but they seem fine. Pupils don't normally blow w/migraines, do they? Anyone?

Thanks

snoop

[Kim]

Hey Snoop,

Sorry you're such a mess right now.  All the pressure in your head could be a lingering sinus infection—-just a guess, of course.

SD does cause big time tendinitis.  Collagen forms on the tendons making them less pliable.  I am constantly stretching something otherwise I'd be stiff as a board.

Your eye/pupil condition is curious, for sure.  I have pain behind my right eye and that pupil is always larger than the other.  The ophthalmologist said there is inflammation—-another partial/non-answer that we're all getting frustrated with.  Few doctors are willing to do the hard work of figuring out what's behind all the bizarre symptoms of SD, and quite honestly, I'm not willing to go through endless testing anymore.  I'm diligent about the semi-annual PFT, chest scans and blood tests, but the rest I've learned to pay attention to symptoms. 

Hang in there……kim

[snoopygirl]

Thanks Kim! My headache is feeling better today. I don't know if I pulled something in my neck & that's what triggered it or what. My neck is really stiff on one side & has been for a long time so it's not hard for me to pull something wrong in there & trigger a mass HA. 

AP- is antibiotic therapy? Why do rheums not normally rx this? What are the typical treatments prescribed? What does ap therapy consist of?

Thanks,

Jen

[Author]

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