Negating Diagnosis

Hi,
I have just gone to see a new rhuematologist this morning. Here's the thing..the other dr beginning last year, said I had gout (treat flares) and no lupus but wrote in my chart that I did have borderline lupus due to a positive ANA. Then this spring said I DID have borderline lupus and when I asked her about it becoming active she said that it depending upon my syptoms which we discussed( I have super sun sensitivity, blue/red/purple fingers upon cold/freezing, Facial flushing/rash in her presence and joint pain, my obviously thin hair) (I do have other symptoms on the list on the LUUS Foundation Website.)

Anyway my primary care physician suspected due to an increase in pain of my muscles, back, hands, feet, chest, fatigue and he also did the pressure point test that he felt like I ALSO had fibromyalgia and sent my back to my rhuemy. She said NO I was too young and wouldn't discuss the symptoms. She said my lupus was active and that was my problem. My ankle swelling and pain she says and treats as gout even though it doesn't symptomate as such and takes forever to go away with the meds. She did say she would treat me AS IF I had Fibro but that I did not have it. I am not treated for Lupus either due to fatty liver disease and fear of hurting my organs.

Anyway I sought a second opinion with a Dr at Vandy and here it is: I have Fibro and he is of the opinion I do NOT have Lupus nor do I have Gout. He believes all is Fibro related. That the "lupus' symptoms are not really lupus and that the positive ANA are just a phantom test. That my ankle is NOT gout and he doubts the toe episodes I have had off and on for 10 yrs are gout either.

So I am now left with to diametricaly opposed views. Totally opposite views on what is wrong with me. Not that I want anything to be wrong with me-but I do want answers. I have done a lot of searching on forums reading about patients' symptoms and things and how vastly differing they can be versus what can be 'listed' on a medical website. I have had many symptoms for 15+yrs but some only 10 or less. The symptoms have increased in severity in the last 2 yrs and especially the last 6mo to 1 yr.

I do not take many meds for pain only as needed and that is tramadol, and naproxen and they were given to me for headaches and other pain not for what I have now.

I have been seeing a neurologist for 4 yr for the headaches I have had for 20 yrs and he finally gave up on me this past spring asking me if I could live with where we are now. I take meds for headache mtce, allergies, High blood pressure and thyroid disease.

So I am relatively in good health. I have had a number of symptoms(lots) most are fluctuating and vary in severity.

I guess I wonder what to do now. I feel more crazy than ever. I thought seeing a rumy in Vandy was better than where I am esp after the 'no to fibro coz you are to young' comment but to totally throw EVERYTHING out the window? I wonder. He did sorta go over my symptom list I had made up along with the number of yrs I had had them. He is doing bloodwork to negate the LUPUS but if positive that still doesn't mean I have it....and to see if I have high uric acid. But I am left with what now.

Oh yeah, my primary care dr left to go to another state and the dr he recomended me to (i have yet to see) has no sympathy for patients with Fibro. I guess I just want to hear from others that have been in similar boats.

Wow, that is tough. I don't have any advice, but I will tell you that I have had 3 different doctors for 3 separate issues at Vandy, and I have never gotten an incorrect diagnosis there. I know that doesn't really mean anything for you, and I know that both Lupus and Fibro can be missed or misdiagnosed, but I have a lot of faith in the docs at Vandy. I went there as a last resort to get my Meniere's Disease (inner ear disorder) diagnosed. I had seen multiple ENTs and Neurologists and had been told that I had everything from allergies to anxiety. After seeing one ENT at Vandy, he sent me to another one there who specialized in inner ear problems. I finally got an appropriate diagnosis and treatment there.

I know it must be extremely frustrating for you. There really is no such thing as being "too young" for fibro, though. It isn't an age related disease. People who are older may have more aches and pains due to aging, but fibro itself isn't an illness of older people.

Thank you so very much for taking the time to reply. I realize I left a lot out, but I was trying to convey what had me in a fog yesterday. Many of my symptoms I have had for years but have dealt with as "normal" and no reason to see a dr with them except for a few such as my chest pain that I have had for years and my family dr would say one time it was heart and the next lungs. I have in the last 5 yrs had heart tests to rule that out and have since been diagnosed with asthma and other lung issues and the dr have left it at that. I have pain on the deepest part of the inhale and the deepest part of exhale. Now this comes and goes. It will last 10 minutes maybe off and on for a day or a few days and then not again for a week or several weeks. I have had this for years. It is a sharp stabbing pain.

I have difficulty swallowing that started in the last 10 yrs just once in awhile but in the last yr or so it is about once a week or more often. I had an upper GI in OCT to rule out physical problems. No problems visible and Dr put me on nexium (found touch of gastritis) to see if maybe it was a touch of reflux even tho I had no symptoms of it.  Well it's been what, about 5 wks and last friday at lunch almost EVERY bite I had trouble with.  This issue usually happens on soft foods like mashed potatoes and the like or breads, not on foods with substance.  No one knows why.

I had low vitamin D and take supplements and now have it in "normal" range. Many of my symptoms were not "dr worthy" so I just had them and they would come and go.

My sun sensitivity started 10 yrs ago with a rash, horrible rash. UGH and in the last 3 or yrs if I am in the sun very long I get a throbbing headache, exhausted feeling, sick stomach, dizzy, awful feeling that depending how long I am in it will determine how long it lasts. That I just atributed to a 'sun allergy' and went on about my life. Same with the super sensitive eyes - my sunglasses are specially cut/tinted and have been since I was a teen.

I have had an increase in symptoms and severity in the last year and a half with the worst in the last 4 or 6 mo.

I believe I do have gout. My grandmother had it and I do believe I have it in my toe, Not my ankle tho. It doesn't feel like my toe and it doesn't respond to the meds like the toe. I do remember there being blood tests to back it up at the time and that I still had uric acid but she didn't want me on meds all the time.

Now the LUPUS is a whole other matter. I have done a LOT of reading of material concerning lupus including forums to find out what real people who have it say. Just like Fibro since the lady I work with has it really badly, took her a yr and a half to be diagnosed a yr and a half ago and she is in total denial over the whole thing, She seems to think she will be pain free with the right meds and be like she used to. I don't know, but anyway I have done a lot of researching real people who have both conditions.

Anyway thanks to the research and hearing from people like you all I realized I had so many symptoms and for so many years of Fibro it wasn't funny. I also have the symptoms of Lupus but not like I think maybe I should. So I don't know. I do know the ANA is NOT The only test that should be run and just because it is pos or neg doesn't really mean a firmative answer. It has to be the whole. And honestly I was having a pretty good day when I saw him yesterday.

I also did not have the records from last yr with the blood work. DUMB me brought the wrong file. So I am going to look for the file with all my last years' bloodwork relating to both diagnosis (gout and lupus) and send them to him so he can review them. That would help him immensely I believe. I Do feel like the Fibro is a valid diagnosis after all the research I have done and it explains so very much for so very long that has gone on with me.

I do also believe the gout is valid. I am however, on the fence with the Lupus and really have been with everything I have read. But wonder what else it could be. I don't think ALL of this is FIbro. I really don't. And I am at loss about another Rhue. He came recommended. And if He believes this is ALL Fibro and not anything else then he will stop here. He is only doing the bloodwork because he had nothing else to look at...and because I wanted him too.

I cannot take Lyrica but have tried it and got relief. I cannot take codiene, hydrocodone or flexeril. I am taking amnitryptiline already for headaches and have tramadol, naproxen for pain given for the headaches and gynological pain. New Rheu has decided to try zoloft for the exhaustion.

So there you go, there is a little more about me and my issues.

Thanks for taking time and talking with me, I appreciate it...

I'm sure you realize then that lupus and fibro have many of the same symptoms.  It's good that your doctor is trying to rule that out.  You also can have fibro and lupus.  We have members with both.

 

I had a few times where I couldn't swallow at all.  Now, THAT is frightening and I had visions of stomach tubes dancing in my head.  It turned out to be anxiety.  I don't have many problems with anxiety because I can recognize it for what it is...fear...and can basically dismiss it.  But this really threw me when it happened.  I wrote on the forum about it and a few others had that happen to them, too.  What they did, when they couldn't swallow, is cough!  I tried it and it worked.  I guess the coughing relaxes the muscles in the throat...just a guess but sounds good to me!  So, you might want to try that next time.  I'm again glad you have seen the doctor about this.

 

Sun sensitivities can also be caused by medication you are taking.  If you were already prone to sensitivity to the sun, the meds could make it worse.  But, sometimes we have to take these medications anyway.

 

You could have gout...many people do.  But my problem, even though my doctor was sure it was gout, didn't respond to the medication. 

 

I'm glad you check everything out instead of self-diagnosing.  That's the best thing to do.

 

Sherrine

To clarify a few things: the rheumy I saw yesterday was the one at Vandy and the other Rheum is here in KY and she is the one who said i could not have FIBRO because I was too young. That is one of the reasons I immediately sought another opinion. I knew that was incorrect.

I have tried to do as much researching as possible without becoming "dangerous". But by the same token, I do not want to sit on my hind quarters and just accept what the dr says as fact without question.

 I have several dozen if not more symptoms (too many to list here) and most I didn't 'put together' as pieces of a bigger puzzle until I was research Fibro for my friend. THat is when I began to have "ah ha" moments. So when My Primary care dr suggested Fibro I was kinda prepared for him saying he thought I had it (well, sorta) but not for my rheumy's reaction. That is why I wanted to go to Vandy. But the Vandy dr's total denial of gout and lupus is quite surprising. That is why I am going to hunt up records from last yr and see if I can't get them forwarded to him...just for his information prior to bloodwork coming back. It may not make a diff but it might. I don't know. Either way I am still left with a what do I do situation.

 I am taking Vitamin D supps to keep the level up there. I am going to go back to yoga...I don't know that it really helped but I liked my me time.

As for anything else...I will try the zoloft he is prescribing and see how it goes. We shall see. I am not scheduled to see any rhuematologist until march(Ky) and april(vandy) so I have time. I have days where I think I am fine. But if I am hugged or something...it hurts to be touched. That type of thing. I don't have many "good" days though.

But Thank goodness I don't have super bad days like my friend I work with. I have days it is super painful to walk in my back and hips, or in my knees and feet. Somedays the hands hurt really bad. But you know I just go. My KY rhuem told me to try the Naproxen 3 times a day on days like that. I try taking it when I am hurting badly but it seems to just take the edge off but at least that is better than not doing anything.  and I don't always remember to take it on schedule either.  The tramadol takes the edge off sometimes. Again, better than nothing.

I feel like I am complaining too much considering how badly others are. I just feel overwhelmed right now. I can't say much at home, my fiancee totally doesn't understand and fusses if I complain. I am making a concerted effort to not say anything about how I feel. Or anything. If there is something I can't do, well, I can't do it. But I have tried to print stuff out and have intelligent discussions but alas, no luck.

Thank you all for listening. And I am very sorry I got everyone confused with my rambling. I wanted to get the gist of it down and then succeeded in being too wordy and confusing everyone. Again I apologize. Thanks so much. I really am thankful for the support.

Blue in Ky