Words can't describe the anguish and frustration....
I don't know how much more I can take ....
I've just been subtly dismissed by the 3RD Rheumatologist....
I'm not a hypochondriac....my symptoms are REAL....
I have inflammation and swelling from my fingers to shoulders and skin lesions in many areas including thumb nail involvement...
I have random sudden pains in various joints all day long.....
Just because my blood tests and MRI of my hand are NORMAL....DOESN'T MEAN MY SYMPTOMS AREN'T REAL....
I was practically cured with a short course of 10 mg of Prednisone and instead of transitioning into a DMARD....I get weaned off ....only to have everything come back with a VENGEANCE...
I was a normal, healthy person....who didn't complain about anything before this started.....
.......And all the doctor can prescribe is Cymbalta for "unexplained joint pain"......
I'M AN INFLAMED HOT MESS !!!!
I'm determined to find a doctor that will listen and diagnose the OBVIOUS !!!!
Awwww, ThreadDesigns, we hear you and extend our support to you.
Now forgive me if we've talked about this before, I've only just woken up and had two sips of my sleep slaying brain engaging mug of strong black coffee, but have you tried the dermatology route? Start off with a confirmed diagnosis of psoriasis and go from there?
And I'm also thinking this calls for us to find other members in NJ who may be able to recommend a PsA cognisant rheumy ... or do you already know where you are going next? HERE is just a quick taster. Feel welcome to post a separate discussion to attract their attention.
ThreadDesigns, I have been in a very similar place myself, as have many other people here. What you need in order to move forward is, as JulesG says, a rheumatologist who has a specialized interest in PsA. Finding that doctor (or rather, in my case, that team) turned the course of my life around.
Remind us what happened with Rheums 1 and 2. How did you select them? What major cities are you prepared to travel to if necessary? I will put my thinking cap on my old head if you can tell me that.
Jules’ suggestion about sifting through the members list is good, as is that about the separate discussion. If you post a separate discussion, you will get better responses if you mention potential location in the subject line.
You are not the first to feel that you are being treated like a hypochondriac! (Look up two newish members, PhillyLou and Flow and read their profiles!) I often say that for years my doctor thought I was a healthy person acting like a sick one. Now I realize that I was a sick person doing my level best to act like a healthy one.
This is a very difficult stage to go through. But when you finally get to the expertise that you need, you will be glad that you persisted.
It was about an hour before my follow up appt. with rheumy #3 when he personally called to tell me that it wasn't necessary for me to come in and I should start taking a pain killer for about a month before I see him again.....and even when I explained how my symptoms progressed in the wrong direction....that didn't change his course of action. I then took the next 20 minutes to compose myself after the conversation.....
I must have been channeling you Jules 'cause I came up with the same thought process....Go back to Dematologist #2 and have a follow up session to vent my frustration about the rheumy....I managed to get a same day appointment....
I'm definitely learning ...slowly...that "The Specialist" may not be SO SPECIAL.....I've been choosing specialty doctors without investigating their SUB specialty....What I mean is....just because I'm seeing a Dermatologist doesn't mean he or she is well versed in Psoriasis.....skin cancers could be their specialty for all I know.....
So Derm#2 is still not convinced I have psoriasis....not to mention psoriatic arthritis ...even with ALL my symptoms...He won't budge without clinical proof.....So we do another biopsy...this time a "punch" instead of a "scrape" like the last time. If you told me 2 months ago that I would have to pray to be diagnosed with a chronic disease, I would have laughed and said you were crazy....
I said when the results come in and we meet again on the 24th to take the stitches out, I'm not leaving the office without a long term treatment plan that includes some kind of DMARD.....I said I'm even willing to take the cheap crap - methotrexate just to see how I respond.....And If it works, I promise that I won't say " I told you so"....
.....stay tuned.....this story WILL eventually have a happy ending ......I'm determined....
The irony's not lost on me either. Like when you desperately want a swollen joint to stay swollen just until that appointment ...... it's an upside down world we're in at times.
Aha ..... a punch biopsy, that is what I had, not a scrape. The 'thing' on my arm so did not look like psoriasis but the punch biopsy showed it was. So in this upside down world of ours, I hope you have psoriasis!
ThreadDesigns said:
If you told me 2 months ago that I would have to pray to be diagnosed with a chronic disease, I would have laughed and said you were crazy....
Ah ThreadDesigns I feel for you. All I can really do is offer you emotional support as I am in the UK. But like you I knew there was something wrong for decades - and the doctors just smiled and told me to take pain killers, or at one time told me I should be happy to have my health as I had two eyes, two ears a nose and a mouth - I kid you not! Things got unbearable after my hysterectomy - I felt like I had been thrown from bed to operating table and back - all the surgeon said was 'I can assure you that did not happen'! So I took things into my own hands and googled my symptoms this led me to the Lupus Clinic in London Bridge. It is a private hospital ( I bypassed the NHS). There I saw my saviour, a wonderful rheumatologist called Dr Avinda Kaul. It took a while for him to sift through my varied symptoms and at one point he thought I might have Sjogren's Syndrome, but eventually settled on PMR and PSA. What had caused the delayed diagnosis was the fact that I do NOT have psoriasis, but some of my close family do. He also says that PsA is mainly diagnosed by symptoms not everyone has high inflammation makers. Do look into PMR it does have similar symptoms to PsA but affects the large muscles - hips, buttocks, shoulders. Prednisilone is the only thing that helps it. Good luck in your search for the right consultant - don't give up. I'm lucky I now see mine on the NHS, but still trying to get the perfect meds - I had to come off Prednisilone as I was on it for four years, now I'm on Humira injections one a fortnight. It helps quite a lot but it's not the complete answer.
ThreadDesigns, that rheumatologist tells some very interesting things. I know you are very busy, but it’s well worth the watch.
Seenie
E.Rose said:
Ah ThreadDesigns I feel for you. All I can really do is offer you emotional support as I am in the UK. But like you I knew there was something wrong for decades - and the doctors just smiled and told me to take pain killers, or at one time told me I should be happy to have my health as I had two eyes, two ears a nose and a mouth - I kid you not! Things got unbearable after my hysterectomy - I felt like I had been thrown from bed to operating table and back - all the surgeon said was 'I can assure you that did not happen'! So I took things into my own hands and googled my symptoms this led me to the Lupus Clinic in London Bridge. It is a private hospital ( I bypassed the NHS). There I saw my saviour, a wonderful rheumatologist called Dr Avinda Kaul. It took a while for him to sift through my varied symptoms and at one point he thought I might have Sjogren's Syndrome, but eventually settled on PMR and PSA. What had caused the delayed diagnosis was the fact that I do NOT have psoriasis, but some of my close family do. He also says that PsA is mainly diagnosed by symptoms not everyone has high inflammation makers. Do look into PMR it does have similar symptoms to PsA but affects the large muscles - hips, buttocks, shoulders. Prednisilone is the only thing that helps it. Good luck in your search for the right consultant - don't give up. I'm lucky I now see mine on the NHS, but still trying to get the perfect meds - I had to come off Prednisilone as I was on it for four years, now I'm on Humira injections one a fortnight. It helps quite a lot but it's not the complete answer.
Addendum! My consultant is Arvind Kaul not Avinda!
E.Rose said:
Ah ThreadDesigns I feel for you. All I can really do is offer you emotional support as I am in the UK. But like you I knew there was something wrong for decades - and the doctors just smiled and told me to take pain killers, or at one time told me I should be happy to have my health as I had two eyes, two ears a nose and a mouth - I kid you not! Things got unbearable after my hysterectomy - I felt like I had been thrown from bed to operating table and back - all the surgeon said was 'I can assure you that did not happen'! So I took things into my own hands and googled my symptoms this led me to the Lupus Clinic in London Bridge. It is a private hospital ( I bypassed the NHS). There I saw my saviour, a wonderful rheumatologist called Dr Avinda Kaul. It took a while for him to sift through my varied symptoms and at one point he thought I might have Sjogren's Syndrome, but eventually settled on PMR and PSA. What had caused the delayed diagnosis was the fact that I do NOT have psoriasis, but some of my close family do. He also says that PsA is mainly diagnosed by symptoms not everyone has high inflammation makers. Do look into PMR it does have similar symptoms to PsA but affects the large muscles - hips, buttocks, shoulders. Prednisilone is the only thing that helps it. Good luck in your search for the right consultant - don't give up. I'm lucky I now see mine on the NHS, but still trying to get the perfect meds - I had to come off Prednisilone as I was on it for four years, now I'm on Humira injections one a fortnight. It helps quite a lot but it's not the complete answer.
Thanks E.Rose.....I'm going to watch the lecture....
Oh....and btw....Now I know what the "fatigue" symptom is .....Random ....out of no where....I felt like I was beat up and so physically tired earlier today.....3 advil brought me back from feeling like a zombie.....Now I can add that to the "case study" of me....
Hi ThreadDesigns - I sometimes think the the fatigue is the most annoying part of the condition. Constantly feeling exhausted and unable to do all I want to do. I assume your screen name indicates you enjoy sewing. I do too and I find being in my sewing room creating something helps me feel productive and useful. Quite a few years ago I wrote a children's book which is a story but also educational about healthy eating. I had to self publish which in itself was an education. Anyway to get to the point I couldn't afford illustrations so now I'm making 14" dolls of all the characters, that'll keep me busy for the next few years! Today I'm starting on the Fast Food Fiend! I am also enrolled with the Royal School of Needlework at Hampton Court - they are really accommodating of my limitations and let my husband carry up my equipment. I do hope you are feeling better today - keep us posted on your progress.
ThreadDesigns said:
Thanks E.Rose.....I'm going to watch the lecture....
Oh....and btw....Now I know what the "fatigue" symptom is .....Random ....out of no where....I felt like I was beat up and so physically tired earlier today.....3 advil brought me back from feeling like a zombie.....Now I can add that to the "case study" of me....