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Discussion Starter · #1 ·
here's the thing,
I've been feeling like ****, a vague, undifferentiated ****, for about 10 months now. (I live in the states) And as soon as our insurance kicked in I set up an appointment w/ a GP, was diagnosed w/ Raynaud's & sent to a rheumy (I also see a psych). The rheumy & GP took blood samples on the 1st visit, told me how to deal w/ the Raynaud's, told me that if anything new came up to make another appt w/ the rheumy, sent me home.
(the bureaucracy of the healthcare system here means that you get about 5 minutes of face time with the doc, after waiting for 2 hours, so on those first few visits I lost my patience by the time the DR actually came in to see me.)
then I started getting fevers at night that would cause me to feel like I was freezing w/ no way to get warm, about 6-9 raynaud's attacks per day, no appetite at all (I eat a big breakfast with my wife each morning, then more or less forget about food (or am made sick by the thought of it) until 10-11 pm), the feeling that each part of my body weighs 200 lbs, spitting headaches, I awake about 10 nights per month, exhausted but not tired, I became very clumsy (dropping things, stepping on my own feet, hitting my head all the time, etc), difficulty breathing, pains in my chest, along my shoulder muscles (at my neck & at my arms), and pains in the ligaments behind my knees.
So I made another appt w/ the rheumy. this was about 2 months after initial visit, she told me my blood work looked good, that this was all in my head, I was imagining it & doing it to myself. very dismissive, she kept looking at her watch & the door during our visit (all 5 minute of it). She also told me that I have "a remarkably bad case of raynaud's" and that I should make another appt w/ the GP.
since she said it was all due to stress & that if I relaxed it would all go away, that's exactly what I did. (never mind the fact that a majority of these symptoms began while I was on my honeymoon, & quite relaxed). relaxation or not, I didn't feel any better. Everything is still happening to me (though to a greater or lesser extent on some days) So I decided to force the issue, to intentionally do the things I "thought" were making me sick to see if I still did or not. Then, whenever I was in the summer sun I couldn't look above my feet for the pain it gave my eyes, if I was out for more than an hour I would become very confused, forgetful (like going to the grocery store w/out realizing it & buying a bunch of things that don't make sense & that we didn't need), or not know where I was. My face began to burn & itch across the the bridge of my nose & on my forehead up around my eyes. there were days I literally couldn't think at all, but I didn't even realize it. I have become very snippy with people, biting their heads off for no reason (I'm a very patient & calm guy though).
so I made another appt w/ the GP. I talked to my folks about the family's health, one uncle has Crohn's, both grandfathers and one grandmother had rheumatoid arthritis, an uncle (on the other side) died at 57 of idiopathic pulmonary fibrosis.
At this visit the GP took an EKG, and a chest x-ray, and prescribed albuterol and allegra because he thinks I'm developing allergies. then scheduled another appt in 4 weeks.
does this make sense to anyone?
I was able to obtain a copy of my blood work, turns out I did test positive for ANA antibodies, but to a small degree.
what's going on?
any help would be greatly appreciated
sorry this was so long & rambling
 

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Hi Sweet Tee and welcome to the board.

Here is what I tell everyone and I say it emphatically........YOU KNOW YOUR BODY BEST!!!!! If you feel something is wrong with your health then you must push on until you get some answers.

It sounds like your doctor is less then desireable and maybe you need a better GP or Rheumy to treat with, one who will listen and not judge. You have a lot of things that could be Lupus however it could also be something else auto-immune in nature. Lupus can mimick many things. Did you check out the criteria for Lupus and if so how many of them do you have? 4 or more makes it more likely Lupus and your blood work does NOT have to be positive for a dx of Lupus. Some folks have the dx of Lupus but their blood work looks fine.

A doctor must look at the whole picture, not just blood test results. I would try to contact your local LFA chapter to see if you can find a recommendation for a Rheumatologist that specializes in Lupus and get on with seeing a better, more compassionate doctor.

I wish you luck and remember that a lot of us dealt with what your dealing with for years before we got a diagnosis. Keep going until you get answers as you know your body better then any doctor. They work for us.....we do NOT work for them.

By the way, I am in New Jersey. Where are you located?
 

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To add to what Karol said... anytime your symptoms last that long & can be that severe... it's worth it to revisit a rheumatologist. Although in your case, I would recommend going somewhere else for a second opinion. While many doctor visits don't last long these days... an initial workup and first follow up visit should take considerably longer than 5-10 minutes. 30 is about the minimum I would expect in order to take a thorough family history, medical history, symptoms and physical exam/check.

Just because things looked OK at one point in time, it doesn't mean the bloods won't change. For many people, they do change and become positive after a number of months or years. Furthermore, there is such a thing as sero-negative lupus; about 2-5% of people test negative to ANA but can be diagnosed through other means such as other positive bloods, or a positive skin biopsy if there are rashes, or through symptoms .

Good luck to you - start looking around for another doctor. It's definitely in your best interest to get another opinion.
 

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Discussion Starter · #5 ·
I live in Chicago now, but will be moving back to Atlanta (my hometown) in a few months. which is why I'd like to get this answered and on the right track. though I know it can take years.
and on a given day I can 6 or more symptoms from the list, but they come and go.
thanks again
 

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Discussion Starter · #6 ·
thanks a ton for the reassurances. it's really comforting to know that others have been there too. I thought I was going crazy before I went to the rheumy, then she pretty well had me convinced.
I'll check w/ the HMO & see what I can do about the 2nd opinion, I've got another GP appt set up in a month, and a psych appt in 2 weeks (I'll be getting some neuro tests done), see if anything changes.
can I request more blood tests at the next GP appt?
and what can you do to help the confusion? I just had my first albuterol & allegra doses today; something threw me into a rage.
does that sound familiar?
thanks again, maybe I'm paranoid, but it's hard to talk about without feeling like I'm making a mountain out of a molehill, and I'm really afraid of crying wolf
 

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Hello and welcome,

Having this disease alone will try the most patient of persons, and especially if you have it, and others are dismissive of your symptoms.

Apparently, my bloods were negative for years before showing a "sky high", positive as the Rheumy said. My G.P. blamed the difference in values on the lab of course, but it could be that they just turned, and when they did they did in a big way..

You might try requesting more bloods be drawn, and that they are sent to a different lab this time. A Rheumy will order more specific tests also.

Albuterol had a steroid in it..I believe. It can make you feel very agitaged, and irritable. Be easy on yourself, you really do sound miserable and misunderstood, and even dismissed.

I understand the feeling. Please, whatever you do, do not let them tag you as
only a mental case...It will delay your treatment, and you could get significantly worse in the mean time.

This happened to me.

Sandy
 

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Hello Again,

My sister lives right outside of Atlanta and I know that the doctors there are really very good. There is Emery and like the Mayo Clinic or John Hopkins they are world renowned and known for excellent care with qualified specialists too.

I think you may have better luck once you move back to Atlanta and I would suggest you start over again there. You will probably be much happier with the care you will receive.

I have major GI problems that no one up here can figure out and I am now entertaining the thought of Emery or John Hopkins for better doctors and hopefully some concrete answers.

I wish you luck and please don't ever feel like your crying wolf. You know your body and you know when things are not right. My blood work looked awesome for years and years although I felt horrible. All of a sudden things changed and started to show up in the bloods which helped paint a clearer picture.

It took time but the answers did come. Keep us posted as to how you make out and maybe you should call some doctors in Atlanta now to get the appointments set up so that you get ahead of the game.:wink2::wink2::wink2:
 

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Discussion Starter · #9 ·
it's funny you said that, Karol, I'm actually trying to get into a graduate school program there, and my wife is a PA applying to work in the Emory ER.
maybe it'll work out
thanks for the advice, I'll let you know how things go...
 

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Graduate program for medicine??? And your wife is a PA, WOW, this is great because now I am really confident that you will get better care once you return home to a place where you belong.

Yes, please keep us posted and make those phone calls now to get the ball rolling and set up some appointments.:wink2:
 
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