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Rheumatologist...do they do anything?

Nov 10, 2015 8:00 PM

I had a rheumatologist I was paying out of pocket that helped me burn through my savings who diagnosed me the 2nd time with fibro. The first was my obgyn 10 years prior.

My PCP is great. She actually ordered all the tests the rheumatologist wanted so at least the tests were covered. She has monitored and increased meds where needed.

I searched for 9 months trying to find a rheumatologist that would take my insurance. The ones my insurance covers in the seattle area (Swedish and UW) sent me to thier pain clinics without seeing me due to the fibro diagnosis. Both pain clinics said there was nothing more they could do for me.

Anyway I finally found one who will take my insurance and actually see me in Tacoma an hour away if the traffic is good and have had the appointment set (Nov 12) for 3 months.

Two days away and I am wondering what good it will do. Has anyone been diagnosed with fibro, cronic pain syndrome or similar that had any luck with a rheumatologist after the fibro or cash was diagnosed?

I am feeling less than hopeful to say the least.

Nov 10, 2015 8:20 PM

Shammagren, at first I only had the fibro and OA, so my rheumy doc referred me to pain doc. Then I began having more all over pain, vague swelling, blisters/rash in my mouth, dry eyes/mouth/throat/skin. I returned to her and when she saw the blisters she sent me for a mouth biopsy. It came back sjogrens. She sent me for eye evaluation before starting me on Plaquenil. It was about 9 mos between my first visit and my sjogrens symptoms being dx. I was also dx with hypothyroidism at the same time. As others have alluded to, one autoimmune disease generally leads to others, so now I have 3. Good luck! (((Hugs))) & a prayer this doc will be helpful! 🙏🌼

Nov 10, 2015 8:42 PM

Thanks flappy I was diagnosed with hashimotos thyroiditis first, then no vitamin d, then fibro by my obgyn, she was a great dr and no one else would help me. Then anxiety with severe panic attacks and anxiety ocd. Along came high blood pressure and metabolic syndrome thanks hypo thyroid. Then reactive airway disease, cronic pain syndrome and so on. Through out my life migraines, infections and skin issues.

Then to the first rheumatologist who really didn't do much as I already had all the diagnosis.

I know there is something else going on. My eyes, nose and mouth are always dry, beyond dry and I only have some relief drinking water in the shower. I have a constant headache. My physical therapist seems to understand the pain best and after looking at my Mri's said I don't know why they are telling you that you have 2 Herniated discs thorasic and cervical when every lumbar disc is messed up.

I just don't know that a rheumatologist can help with all this. I guess I am feeling the frustration I try to push down all the time. Sorry to be such a baby I know others have much bigger problems.

Nov 11, 2015 5:48 AM

You can get some type of eye test that checks the degree of dryness, and I think can determine sjogrens. You could ask an ENT to do a oral biopsy, or have your rheumy doc refer you for one. My ENT only did 3 areas for biopsy, but according to lab doc should have done 5 areas. I still showed positive.
The rheumy can't help the spinal discs except give meds; a orthopedics, neurologist, or pain specialist would be better for that. Your meds could be partly to blame for dryness. My dryness has caused nosebleeds for years, once requiring a cauterization. I w will keep you in my prayers. I know how frustrating and nerve wracking it can be! 🙏🌼

Check out this site: www.sjogrens.org

Nov 11, 2015 11:55 PM

Thank you flappy I have wondered if I have sjogrens as dryness has been an issue before the bag of meds.

Unfortunately, I tried 2 pain specialists and they both said there is nothing more they can do for me. I went to a neurologist who all she did is test me for Parkinson and said i don't have it and sent me on my way. I am waiting for the spine clinic to call me with an appointment or to say there is nothing they can do for me.

You would think after 10 plus years I would be use to this run around.

Tomorrow is the rheumatologist so guess I will see what happens there.

Nov 12, 2015 11:43 AM

Hopefully they'll refer you for a buccal (cheek) biopsy with an ENT doc. If not, go see an eye doc or your PCP and request the biopsy. Good luck! 🙏🌼

Nov 12, 2015 8:49 PM

Thanks flappy I came home with a long list of blood tests the rheumatologist wants and additional xrays.

She made me feel like I was starting from square one all over again. She couldn't understand how so many other rheumatologist and pain clinics could just do nothing.

She said I have a very bad case (is there a good case) of fibromyalgia that I can barely be touched at all and I get bad flu like stuff and it just cycles with minimal relief. Pain, flu, hives not always in that order but always together. She is not ruling anything out until there are more tests.

I guess it was worth the hour drive and hour and a half back due to a wreck. The bad is she is so busy I can't get back in until may.

Nov 12, 2015 9:21 PM

WOW!! You have to wait all the way to May to see her again?!?!? That's really a long time! Do they have a thing where they can put you on a waiting list and if someone cancels then they can call you and you go in sooner??

Nov 12, 2015 9:37 PM

Alwayz, they dont, they are in such high demand they said they rarely have cancellations. They are so serious about cancellations that they have all sorts of if you don't cancel within or are late for an appointment they won't see you again.

She is referring me to a fibromyalgia specialist or clinic I have already forgotten to see in the mean time IF they will take my insurance. The hell of being on state medicaid.

Nov 12, 2015 10:19 PM

I spoke with my Rheumatologist about possibly having Sjogrens and he ordered labs... but it was all blood work. He is taking me off Doxepin, put me on a low dose Pred pack, and then trying me on Plaquenil. Are there certain tests for Sjogrens that HAVE to be done for diagnosis? Is he jerking me around? My labs just showed severe inflammation, even with all the meds I'm on.

Nov 13, 2015 10:37 AM

Here is info on sjogrens testing which some is blood work

http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/tests-diagnosis/con-20020275

The problem with this and a million other things is they all have similar symptoms so it is hard to figure which one. The curse of autoimmune issues.

Nov 13, 2015 10:40 AM

Also I always look up every blood test and see what it is being done for specifically. Most the time they just say we will test you for X then order 10 or more tests and I find by looking it up it is for numerous things.

Trying the link again

http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/tests-diagnosis/con-20020275

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