RecipeForDisaster Posted June 16, 2019 Report Share Posted June 16, 2019 I'll be going to a rheumatologist for the first time... in addition to this impossible to classify hypotensive/syncopal/orthostatic/tachycardic illness that I have, I have a persistently positive homogenous ANA and confirmed immunofluorescence. I do kind of feel flu like most of the time and have a chronic sore throat, plus a bad neck, back, and shoulders. I'm not really sure what to expect. If they are going to draw a ton of blood (I sent them a boatload of labs, imaging, notes...) I'll need IV fluids, but I'd rather not bring them on public transportation. I have had negative tests for lupus and rheumatoid factor, so I don't even know what we're looking for. Any input would be welcome! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 16, 2019 Report Share Posted June 16, 2019 Ask them if they diagnose serum negative autoimmune diseases. A significant percentage of RA and lupus and probably other patients never test positve with their bloodwork. They get what is called a 'clinical' diagnosis. That means, if it looks and acts like lupus, they call it lupus. There are also nebulous categories like Undifferentiated Connective Tissue disease and Mixed Connective Tissue disease. Do they diagnose those? With your test results you may start out with Undifferentiated Connective Tissue disease until something develops further. If they diagnose like that, do they treat it? Some places won't give you meds until your bloodwork is positive. It took 10 years for my bloodwork to be positive for RA, but I was lucky and got meds anyway. The RA meds have helped me tremendously. Do some research on this so you can go in with information on 'beginning' or 'almost' autoimmune diseases. Those are my terms, but it seems to fit many people I know. Good luck. I hope you get a progressive doctor who is willing to look at more than black and white. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 16, 2019 Author Report Share Posted June 16, 2019 Thanks. It really seems autoimmune to me, especially since no one can seem to figure out WHAT it is.... and I have lots of unexplained other stuff too. That's just what I was saying to a friend-I hope he's creative and determined. I can't imagine leaving another specialist's office with "not my problem" as a result! I didn't get much choice in this referral, so my fingers are crossed, but he's at a major, and good, hospital. Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 17, 2019 Report Share Posted June 17, 2019 @RecipeForDisaster - based on your symptoms and a positive ANA they should be able to "label" you with autoimmune, and hopefully they will be able to treat you. Having said that - they may not address the orthostatic issues like your hypotension and syncope. Although research suggests that there is a link between dysautonomia and AI it is still a very new finding and I suppose it is possible that they want to just concentrate on the AI issues. So - I guess I am saying don't expect them to connect the two issues. But if they diagnose you and treat you for your AI related symptoms the dysautonomia might improve as well. Best of luck - think positive! Please keep us posted on your visit!!! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 17, 2019 Author Report Share Posted June 17, 2019 Even if they don't connect them, it seems like something else is wrong with me overall, so I'd really love them to find it. My expectations are pretty low, but I don't really know where else to turn for help with diagnosis and treatment (and I really don't love having autoimmunity going on unchecked). Thank you! Quote Link to comment Share on other sites More sharing options...
p8d Posted June 17, 2019 Report Share Posted June 17, 2019 I was sero negative for any autoimmune disease for thirty years before my ANA came up positive although I suspected AI for all of those years. Nobody would treat me until I had a positive one. I had a number of low level results but nothing positive enough for a definitive diagnosis so am labeled UCTD or MCTD depending on what my rheumatologist feels like calling it. I started on Plaquenil and that helped with fatigue, malaise, joint pain after about 6 months. Not tremendously but certainly noticeable. It has done nothing for BP/hr. My advice for the first visit is bring up every ache, pain, low grade fevers, mouth sores, malaise, dry eyes, joint pain, foot pain that you have. I never realized that the foot pain that had me buying new, expensive shoes was because my joints were swollen. I wasn’t terribly aware that my finger joints were swollen either but I knew I couldn’t get certain rings on my fingers anymore which was also a clue to him. In my experience rheumatologists are generally conservative and don’t want to treat without positive labs. I also have a positive on the Celltrend panel and my neurologist convinced my rheumatologist to allow SCIG. My choice of SC over IV because I already have migraines and am afraid of the aseptic meningitis. That’s helping a lot now too with AI symptoms but like Plaquenil, it’s taken several months. Still little effect on BP/HR but I am blood pooling less and BP/HR are reasonably stable. They will likely take blood unless your blood test results are recent. I had a number of tubes taken to rule out anything else and to test for further AI disease. It wasn’t the 24 I had taken by my neurologist to rule out everything for my diagnosis of dys but maybe 10-12. In my experience it seems that they make money off the blood work so everybody orders new tests. Please let us know how it goes. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted June 17, 2019 Report Share Posted June 17, 2019 I've been in the categories of undifferentiated connective tissue disease and mixed connective tissue disease for decades. Lots of symptoms. They told me people usually definitively develop lupus or RA eventually but I have not. My mom has RA and I'll sometimes have synovial nodules and swollen joints but still not RA positive. Nevertheless, my last rheumatologist did treat me with both plaquenil and when that didn't help enough, imuran, which is a pretty big gun. The imuran really helped. I felt close to normal for a long time. Unfortunately, when I acutely developed more POTS symptoms along with CRPS, gastroparesis and a few other problems, the imuran did not help them. I don't take it now. There's just so much wrong, and the risk with the imuran is not worth it given the total state of my health. It was my choice. I just wanted to let you know there's a wide range of willingness to treat based on the rheumatologist. My guy was the head of a large dept at a large well respected facility. I think he just had enough experience and confidence that it was the right thing to do. Sadly, he's since moved away. Good luck to you! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 18, 2019 Author Report Share Posted June 18, 2019 Phew. Thanks guys. I guess I'm bringing the IV kit on public transportation in case they draw all that blood! I really don't want to be on the floor of a subway car. I do have mouth and nose sores.... usually achy in many places, but part of that is frequently falling and getting hurt. Malaise, absolutely. I used to have my ANA measured often and it never came up positive until about a year ago(consistently positive since then) . After a bit of a workup, and it "only" getting as high as 1:160, I was told not to worry about it. Then my Mayo test said I had immunofluorescence and to look for non-neurological autoimmunity. Suddenly I needed a stat rheumatologist referral. Sigh. I'm very hesitant to use immunosuppressants.... I do so poorly when I get any infection at all. I will do so if I have a reason to, though! Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 18, 2019 Report Share Posted June 18, 2019 @RecipeForDisasterI am in the same boat. I have to see a rheumo for the first time since I had a severe AI reaction from a recent double ear infection. I had general AI symptoms for years but ANA and CRP was always OK ( ESR elevated though ). I am very concerned about seeing another specialist that is "just" educated in his filed, but may not realize about all the nuances of dysautonomia. I am scared that they may not realize the degree of medication sensitivity we have - so I will ask the rheumo to check with my autonomic specialist before starting any big-gun meds. I also get very bad from infections, so I understand where you ae coming from. I - in my case - have decided to hear what they have to say and then go from there. I hope you will find the rheumatologist to be kind, experienced and knowledgeable!!! Quote Link to comment Share on other sites More sharing options...
p8d Posted June 18, 2019 Report Share Posted June 18, 2019 Hi ladies. I found that Plaquenil hasn’t lowered my wbc except for cases where I am flaring or have had a cold. It’s more a DMRA drug than heavy biologic. @PistolI was pleasantly surprised that my rheumatologist knew about Dysautonomia. He explained that a few patients have it because AI and dys strike the same population. He wasn’t keen on IG therapy but my neurologist shared the recent research and is very persuasive. On the SCIG my recent wbc was the highest it’s been since I got sick. Like others have said he’s open to letting me experiment with steroid dosage. I have hydrocortisone which does cause tachycardia but haven’t needed it since I started the IG. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 19, 2019 Author Report Share Posted June 19, 2019 My ESR and CRP are normal too. I'm going in with an open mind and will bring any recommendations back to another one of my many doctors. I kind of had a hunch he might know dysautonomia because patients with AI diseases do get it. Of course lately I have severe rib pain that is restricting my breathing both in and out... I hate having something additional going on to muddy the waters, but the rheumatologist may be interested in it. Thanks! Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 19, 2019 Report Share Posted June 19, 2019 @RecipeForDisaster about the rib pain: I have symptoms of Ankylosing Spondylitis and my PT is convinced I have it, especially since MRI's are also suggestive of it. AS causes spine deformities and stiffness in the rib cage, in my case this causes rib pain and restricted breathing, like you mentioned. AS is also an AI syndrome - therefore the rheumo might very well be interested in the rib pain and shortness of breath, make sure to mention it!!!! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 19, 2019 Author Report Share Posted June 19, 2019 Believe me, I'll be mentioning it, it's quite painful and distracting! I don't want AS but if something helps him diagnose me, I'll take it. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 21, 2019 Author Report Share Posted June 21, 2019 Unfortunately, this was a total and complete letdown and waste of time. The doctor was uninterested and said this was a dead end as I don't have Lupus or RA (DUH thanks). The trip in total took over 7 hours, I waited months to get the appt and spent all those months preparing... sending labs, writing up a summary, etc. He spent maybe 5 minutes with me and got interrupted twice by his pager or phone, and once by someone WALKING INTO THE ROOM to interrupt me in the middle of a sentence (they wanted to know where the doctor was, what??)! I want my copay back!! I do wonder about AS... but I will not be getting any help from this guy! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 21, 2019 Report Share Posted June 21, 2019 Do you know if he believes in sero-negative diagnosis? If he doesn't, then your bloodwork was a deadend before you walked in. Knowing that a doctor doesn't believe in making those diagnoses lets you know what you are dealing with. Sorry you had a bad experience. I had a couple too before I found one willing to diagnose without positive bloodwork. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 21, 2019 Author Report Share Posted June 21, 2019 He wouldn't really even talk to me about anything. I don't know what his views are. I could have something like AS and then I wouldn't even need a seronegative diagnosis. I don't know if I have enough signs of anything autoimmune, but he did not touch me except to listen to my lungs in two whopping places. I doubt I'll be able to be referred to another one. I really hoped for someone who would actually assist me! Quote Link to comment Share on other sites More sharing options...
Awkwardspondy Posted June 22, 2019 Report Share Posted June 22, 2019 I'm sorry the rheumatologist you saw wasn't helpful. If you are concerned about possibly having AS, you can try to get another doctor to test you for the hla b27 gene. Over 90% of people with AS have it. You can have AS and test negative, just as you can be positive and not have AS. But if you have back and joint pain that gets worse with rest and better with activity with morning stiffness that lasts several hours, then it is a step in the right direction. Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 22, 2019 Report Share Posted June 22, 2019 @Awkwardspondy - based on your forum name I assume you have AS? My PCP, PT and chiropractor all believe I have AS based on MRI's ( arthritis everywhere and sacral fusing ), rib and back stiffness, joint pains worse with rest and in the morning. Recently I had a severe double ear infection and triggered an autoimmune reaction with swollen parotid glands and now have to go to the rheumatologist for the first time. Strangely - my ESR is always elevated ( 64 ) but WBC and ANA are always negative. 9 hours ago, Awkwardspondy said: You can have AS and test negative, just as you can be positive and not have AS. This statement makes me hopeful that they will not dismiss my symptoms 23 hours ago, KiminOrlando said: Do you know if he believes in sero-negative diagnosis? If he doesn't, then your bloodwork was a deadend before you walked in. This statement makes me worried that I will be sent home emptyhanded … I have had AI symptoms for 10 years and my PCP has always shied away from a referral due to the negative ANA but since my symptoms this time are so severe ( and plainly obvious for AI ) we are going that route finally. Quote Link to comment Share on other sites More sharing options...
p8d Posted June 22, 2019 Report Share Posted June 22, 2019 Oh @RecipeForDisasterI am so sorry. I had a similar experience with the first rheumatologist I saw but the second one listened and did a thorough exam. I have found that joining Facebook dysautonomia state groups can sometimes help find a Dr familiar with dys and who listens. It might be worth asking there for a recommendation for a rheumatologist. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 22, 2019 Author Report Share Posted June 22, 2019 I'm not on Facebook. I found my doctors didn't even want to send me to a rheumatologist to begin with, so I don't think I have a shot at seeing another one anyway. It's ridiculous. I mean, my ANA turned positive not too long ago and has stayed there... I had new (4 days) chest wall pain when I saw him and he wasn't interested at all. My sed rate, while still within normal range, is the highest it's ever been. I can see if my hematologist will test me for that gene. I'm very let down about all of this. Not that I want AI, but it seems I do have it, and I can't get anyone to care or look into it. Now I have this awful chest (front left) pain that limits me to 1/4 breath, going on a week, and no one seems very worried about it. I got X rays but not the expiratory films you need to rule out free air, and some labs... that's it. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 22, 2019 Report Share Posted June 22, 2019 What kind of insurance do you have? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 23, 2019 Author Report Share Posted June 23, 2019 Federal Blue Cross. The problem isn't my insurance but getting the PCP to send referrals out. They have done so literally about 12 times now, in a few years, and the specialists always require that. Plus, I've asked each doctor and all of my friends and family, and absolutely no one can recommend a rheumatologist!! There must be a lot of bad ones ... I keep hearing "I know some but none I would refer you to". If I heard of one that was promising, I'd bug my PCP, but I'm not going to take another shot in the dark. It stinks!! Quote Link to comment Share on other sites More sharing options...
p8d Posted June 23, 2019 Report Share Posted June 23, 2019 I wasn’t on Facebook either but joined for 3 days when my beloved PCP left his practice. I asked the state group for recommendations, got one and deleted my account. I had visited a few before but was very disappointed. One was obviously scared to treat someone who takes so many meds. The recommendation from someone with dys has been very good. She’s with the local medical college where they have a dys neurologist and is familiar with it. I don’t do social media but in this case it was worth it for a few days because, like you, I was not having any luck with recommendations from family or friends. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 23, 2019 Author Report Share Posted June 23, 2019 I really want to avoid joining even for that long, unfortunately. I am totally amazed that about 12 physicians I see in 3 states don't have a single -recommended- rheumatologist. It makes me think that we might not have any decent ones.... wouldn't one of them know one?? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 23, 2019 Report Share Posted June 23, 2019 (edited) There are very few GOOD Rheumatologist. Even fewer of those who can understand how dysautonomia mixes with autoimmune. I drive 6 1/2 hours to see mine 2x a year at an out of state University research hospital. I had to change PCPs to get there. I also had to ignore the advice and diagnosis in multiple cases. Glad I did. Edited June 24, 2019 by KiminOrlando Correction Quote Link to comment Share on other sites More sharing options...
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