On my way to the rheum tomorrow morning with my questions, reach and photos. I really hope to get some answers, buuuut, we all know hoe that can go.
I just have to remember to beNICE and not come off like a whack-a-doo. It’s really not as easy as it sounds.
I’m having a case of fat fingers. Please forgive my terrible typing. It would have been way worse without auto correct.
Good luck, Grumpy!
Seenie
PS Some of my best friends are whack-a-doo.
How did it go today GrumpyCat?
Of course, I woke up 2 days before my appointment feeling great, In comparison to the previous weeks. That was frustrating because this doc has never seen me at my worst. We agreed that I would come back in5 weeks because I should feel horrible by then, and I will have visible joint swelling, redness, tenderness and my new little tendon friends should also be visible.
He is heading toward fibromyalgia, which ordinarily would just piss me off, but again every time I see him, I feel pretty good, so he has no objective evidence to base any other diagnosis on. However, he should note that I have been on Cymbalta , Flexeril. and Paxil (all used to treat fibro) with no success. I’m not to crazy about the fact that he prescribed another SSNRI when I already was taking a 90mg dose of cymbalta (also a SSNRI) and I was still taking the max dose of Paxil at the time (an SSRI). My primary noticed it and dc’d the Paxil. I agreed to keep taking the Savella for 6 weeks, because I feel good now and I just had an infusion so it’s difficult to say which is helping from the docs point of view. Plus if I do this we cal RULE OUT FIBRO, so that in the future, I don’t have to deal with this crap again.
I am having episodes of Raynauds, which is a new symptom. I told him about this, but he seemed unimpressed. Maybe he is just adding it to the symptom list. I showed him pics to prove it as well.
The good part is, we had a very good discussion. I was honest with him about my other Rheumatologists. I told him that so far he seems concerned, and believes me. I told him that i need him to let me be involved in my care, to question when i dont understand or when something contradicts my own research. he seemed fine with this and seemed shocked at the treatment i had gotten at other doctors offices. I do think that once we are able to build a stronger rapport of mutual trust that he will be a great doc for me.he seems a little more cautious than I want him to be. I just want him to believe me base on my word, but he doesn’t know me yet, so it’s hard to really expect him to do that.
I am a little frustrated that he is so focused on my sed rate and CRP being normal. (They have always been normal as in NEVER have been elevated). My ANA ratio is 1:1280 with a homogenous pattern, my rheumatoid factor is17.2 and I have a high Anticadiolipin Ab IgM Qn, at 19. When you look at what IS THERE, it reads to me, as either SLE or Lupus Like Syndrome which is also called Medication induced Lupus. If you add the skin issues on my face, chest and back, the Raynauds, splinter hemorrhages in my fingernails, the type of deep bone pain, and episodes of calcinosis when taking steroids, and the labs together it makes me think LUPUS. what do you guys think?
strugglingmusician said:
How did it go today GrumpyCat?
Hmmmmm…no answers, but at least you are now seeing someone who listens, believes you and sounds like he thinks out of the box. That can only be good news, even if it’s frustrating.
Trust your body to start “behaving” just before you go to the doctor’s! Go figure: it never fails. Just like my car, which never makes that funny noise when I make an appointment at the repair shop.
GrumpyCat, I’m sorry you don’t have answers yet. But I have a feeling you will get some.
Seenie
PS I know nothing about anything that I’ve never had. Lupus? Nope. Sorry.
I’m scary when I start to do my own research!
Hmmmmm....no answers, but at least you are now seeing someone who listens, believes you and sounds like he thinks out of the box. That can only be good news, even if it's frustrating.
Trust your body to start "behaving" just before you go to the doctor's! Go figure: it never fails. Just like my car, which never makes that funny noise when I make an appointment at the repair shop.
GrumpyCat, I'm sorry you don't have answers yet. But I have a feeling you will get some.
Seenie
PS I know nothing about anything that I've never had. Lupus? Nope. Sorry.
It sounds like you're doing a fantastic job on your research. I'm very impressed. The fact that some of your labs are normal shouldn't point to a diagnosis of fibromyalgia, especially with all of the other symptoms. Plus you've had good control in the past. The Raynauds is an interesting addition, but can be associated with many autoimmune disorders. I'm sure your pictures were pretty, especially if you get red white and blue all at once. Personally I don't get too much blue, I stay more towards white. But I did get frostbite in the past due to this.
Keep up the good work, as well as a dialogue with your doctor. As long as the doctor is willing and able to work with you, you may have found a good one.
Yeah drug induced Lupus is possible, but you get the same numbers with Chicken Pox. (The rash for Lupus is very specific) Really all the numbers mean is you have autoimmune antibodies. believe it or not there are a fair number (5% or so) of PsA patients who have developed sufficient antibodies to set off the ANA. There is some basic research ongoing to develop testing for specific antibodies from PsA so we may actually have a blood test in the near future.... We just got one for Fibro (don't know much about it.)
Frankly lets hope if it is anything that its not the Drug induced Lupus. You can rid of it but it means starting all over with treatment, and the options become limited (for a while)
Hopefully there are none of the male members reading from here on because I am about to reveal a secret that is only passed from father to son. Your Doc was listening when you were talking about episodes of Raynauds. However all men are programmed from a very early age to never respond to anything dealing with a woman's internal thermostat with anything more than a nod or occasional "mmmhmm." The entire institution of marriage depends on it.
Years ago my dad came over to help me build my house. (too bad there wasn't reality TV, we could have had a hit series. Imagine two College profs one an Engineer/Actuary the other Research Study designer/statistician building a house together) We were finishing up the heating system when I noticed we had two thermostats. I asked why and Dad told me one was to control the furnace to be installed in a secret location known only to me and him and the other was to hang on the wall for my wife, mother and mother in law to use. It was hooked to nothing. That way at least half of the couple could be guranteeded comfortable in the evening while the other half could get up to adjust the thermostat at will (about every 10 minutes a various times as I recall) and have hope of being comfortable. A regular couples argument was thus eliminated. To this day I think the man should have gotten a Nobel peace Prize. The most brilliant application I have ever seen was in our church (the auditorium seats 1000) the "thermostat" is on the platform. Twice or three times a service one of the pastors "adjusts it" You can see just about half the congregation sigh every time they do.(guess which half) I hope God is a man for their sake, he would understand. lying in church otherwise could be a bad thing.
We don't mess with the thermostats, we just adjust our clothing. The fans are another story completely. Too funny.
Ordinarily, I would agree with you, but I’m not your typical woman! 
I’m usually like a polar bear, and if I were a horrible person, I’d set the thermostat at 68 and freeze my family. Since I’m not, I’m roasting at 75. I’m hot when I sleep, I take cold showers or I will sweat for an hour after. I got dressed a few minutes ago because my night shirt is thin and I don’t get so hot it in. I could run nude across Antarctica and melt my trail in the glacial ice!
Yeah drug induced Lupus is possible, but you get the same numbers with Chicken Pox. (The rash for Lupus is very specific) Really all the numbers mean is you have autoimmune antibodies. believe it or not there are a fair number (5% or so) of PsA patients who have developed sufficient antibodies to set off the ANA. There is some basic research ongoing to develop testing for specific antibodies from PsA so we may actually have a blood test in the near future.... We just got one for Fibro (don't know much about it.)
Frankly lets hope if it is anything that its not the Drug induced Lupus. You can rid of it but it means starting all over with treatment, and the options become limited (for a while)
Hopefully there are none of the male members reading from here on because I am about to reveal a secret that is only passed from father to son. Your Doc was listening when you were talking about episodes of Raynauds. However all men are programmed from a very early age to never respond to anything dealing with a woman's internal thermostat with anything more than a nod or occasional "mmmhmm." The entire institution of marriage depends on it.
Years ago my dad came over to help me build my house. (too bad there wasn't reality TV, we could have had a hit series. Imagine two College profs one an Engineer/Actuary the other Research Study designer/statistician building a house together) We were finishing up the heating system when I noticed we had two thermostats. I asked why and Dad told me one was to control the furnace to be installed in a secret location known only to me and him and the other was to hang on the wall for my wife, mother and mother in law to use. It was hooked to nothing. That way at least half of the couple could be guranteeded comfortable in the evening while the other half could get up to adjust the thermostat at will (about every 10 minutes a various times as I recall) and have hope of being comfortable. A regular couples argument was thus eliminated. To this day I think the man should have gotten a Nobel peace Prize. The most brilliant application I have ever seen was in our church (the auditorium seats 1000) the "thermostat" is on the platform. Twice or three times a service one of the pastors "adjusts it" You can see just about half the congregation sigh every time they do.(guess which half) I hope God is a man for their sake, he would understand. lying in church otherwise could be a bad thing.
not all at once. First they were blanched, like after you press on a spot of skin but a bigger area, then as they started to warm in the car they turned a blackish blue color for a while before they became more pink. My natural skin color is pink, so that wasn’t abnormal.
Stoney said:
It sounds like you’re doing a fantastic job on your research. I’m very impressed. The fact that some of your labs are normal shouldn’t point to a diagnosis of fibromyalgia, especially with all of the other symptoms. Plus you’ve had good control in the past. The Raynauds is an interesting addition, but can be associated with many autoimmune disorders. I’m sure your pictures were pretty, especially if you get red white and blue all at once. Personally I don’t get too much blue, I stay more towards white. But I did get frostbite in the past due to this.
Keep up the good work, as well as a dialogue with your doctor. As long as the doctor is willing and able to work with you, you may have found a good one.
Lamb, I also don’t mean to sound like I’m not open to other ideas, but I feel like either I have the worst case of PsA ever seen or there is something else wrong. Something else, just seems more logical to me.
There is definitely something else going on.
Those labs are consistent with all kinds of possibilities. I hope you didn't think I was seriously suggesting you had chicken pox did you?
But don't discount it. You symptoms are also consistent with internal shingles which is similar to fibro......
Your research has lead you to the most serious possibilities, I just don't want you to get dwelling there. That causes flares. and viscous circle begins. I know you are positive, trouble is positive people really get hit hard if they get negative. I'm here with you. It WILL get sorted out.
I know you would never say that! I just want to KNOW what’s happening. Lupus was my first stop because it was easiest. My next project is fibro. I made a list of things that sound similar to what I am experiencing a d will research each one. It makes me feel stronger to have knowledge. It gives me power over this disease!
Also, internal shingles sounds awful, btw. I will certainly add it to the list!
br/>
tntlamb said:
There is definitely something else going on.
Those labs are consistent with all kinds of possibilities. I hope you didn’t think I was seriously suggesting you had chicken pox did you?
But don’t discount it. You symptoms are also consistent with internal shingles which is similar to fibro…
Your research has lead you to the most serious possibilities, I just don’t want you to get dwelling there. That causes flares. and viscous circle begins. I know you are positive, trouble is positive people really get hit hard if they get negative. I’m here with you. It WILL get sorted out.
I love your approach. Oh add this blood test to your list:
FM/a
Done!
Do you take hydrocodone? The reason I ask is that I have a theory that if you take hydrocodone for an extended period of time your body can no longer produce its own natural pain killer...actually that's not really my "theory", I'm pretty sure that is just a fact. When I 1st started experiencing my PsA I was taking hydrocodone almost daily for months and months. The last 3 or 4 months I have not taken any hydro and my PsA is mild to say the least. My theory is that my body finally got used to being off the hydro and started again producing it's own natural way of dealing with the pain, which is much more effective.
What do you think?
Am I crazy or is my feeling that many of these "auto-immune" diseases are very similar and are being treated with very similar drugs? It seems diet, exercise, attitude, and stress-reduction are still KEY elements for pain management. Many of you are still getting blood tests upon blood tests and taking multiple (upon multiple) conventional drugs for pain relief. Is anyone on this site considering alternative approaches or at a minimum, integrative approaches to management of these diseases?
Im with you Melody...I feel like the "treatments" themselves that these mainstream pharmaceutical drug dealers are promoting are just compounding the problem. Then again, that is easy to say when you are not the one experiencing the flare up.