Yet another Rheumy rant

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 1/26/2010 10:59 AM (GMT -7)   
Hello Everyone,  I'm here to rant about my Rheumy yet again.  This is the same guy that took me off Plaquenil and Imuran saying he's not convinced I have an inflammatoy condition, which sent me into a huge flare. horrible fatigue, pain and hives from head to toe.  Here's the run down:  I had hives, huge itchy red welts that would burn right down to the bone, then fatigue that was written off as a symptom of being a mother of two boys, then the joint pain in my hands started, gradually getting worse, my hair falls out root and all, but grows back in only much thinner.  My joint pain is now in my feet and starting in my right hip.  I get migraines 2-4 times a week, my eyes twitch, I get migraine halos, I get a red rash on my face when hot, in the sun or emotional.  I'm so tired that the only thing that allows me to do anything is the slight kick I get from the Lortab 10's I take 4-5 times a day.  I've got a new PCP and he's really smart, but I'm worried about what my dummy rheumy may say to him.  I had an MRI of my left hand last week.  Yesterday the Rheumy's nurse calls and says that he doesn't think it's inflammatory and to continue Fibro treatment.  I'm not on any Fibro treatment because none of it did anything except the Lyrica made me completely numb during sex.  I have less pain and more energy when I take 10-15mg of pred a day, but the Rheumy has me tapered down to 5mg and wants me off it all the way.  And of course everyone complains about the amount of pain meds I take, even though I've had reactions to Ultram and all NSAID's.  When I asked about the positive(speckled pattern) ANA and the high positve RA factor, he tells me that it must have been a false positve.  I've had it run  at least 8 times and only once was the ANA negative and that was when I was on Imuran, the RA has always been positive.  I think this guy must be nuts.  Now I'm having the migraines more often, cognitive difficulties, have had two episodes of muscle weakness in my legs so bad I couldn't walk, can anyone say CNS involvement?  Aparently my Rheumy can't.  At least my PCP is sending me to a pain clinic in two weeks and to a nuerologist March 3.  Hopefully, I can get good enough treatment through them that I can tell this goodbye once and for all.  My Rheumy options are slim.  If they take my insurance, they are two ghours away and either not seeing new patients or as one told me not taking new Fibor patients(this was based on dummy's notes).  By the way, I don't have and have never had any of the Fibro points and my PCP agrees that is the wrong direction.  I wish this was something that I could just say forget it and move on, but I know I need treatment and good treatment.  I do have a wonderful threrapist that is so nice and understanding and reassures me that I'm not crazy or a drug seeker as my last PCP tried to accuse me of.  I guess that's it .  Thanks for the rant space, it really felt good.  Take care and God Bless you all for your understanding ears.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Prednisone 15mg daily added 03/09.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/26/2010 12:32 PM (GMT -7)   
Jennifer, I understand not wanting to drive very far to see your rheumy, but I'm on my third and I have a two-hour drive to see him. It's worth it to have a good doctor! It sounds as though you need to do switch rheumies ASAP, no matter how far you have to drive to see him!

Good luck!
JoAnn

P.S. I have a disabled daughter that needs to see all sorts of specialists; we have flown from Southern CA to Baltimore MD to take her to a good orthopedic surgeon!
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/26/2010 1:47 PM (GMT -7)   
That's awful! I hope somehow a new rheumatologist with more of a brain appears in your life soonest.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/26/2010 8:20 PM (GMT -7)   
I would take the long drive over the crap you are putting up with. I am sorry but this guy is a moron.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 1/27/2010 6:46 AM (GMT -7)   
Thanks so much to all of you. I know he's an idiot, but I figured that my symptoms and lab results were fairly obvious that if it's not lupus,. then it's definately something autoimmune related, but this guy is still just not getting it. You know as per the advice here from so many others, I have kept a detailed medical history and symptoms list, along with all the meds we've tried and their various affects. I have it stored on my computer and keep it very current. I print it out for every visit and even have listed the 6 of 11 criteria which doesn't even include the new CNS symptoms. I really wish that better Rheumy's were easier to find. Thanks again so much for the rant time, the support and as always your kind words.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Prednisone 15mg daily added 03/09.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/27/2010 9:06 AM (GMT -7)   
((((( Jennifer )))))) Your doctor sounds similar to my second one and I only saw him 2x! I agree with the others about finding a new rheumy,even if he's 2 hours away, it may be worth it. Any doctor that takes their patient off all their meds and does not listen to them has no business being a doctor! That is ridiculous! You are suffering needlessly. If you get a new rheumy I wouldn't even tell your current rheumy that way he can't voice his opinion, all your new rheumy needs is the list you made of your symptoms and your lab results.

I really hope you find a good rheumy soon and your health begins to improve. Take care and keep us updated.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 1/28/2010 9:04 AM (GMT -7)   
I can so relate. I am on my 3rd rheumy and drove 2 hours to see her.

okay a little background quickly - I've been in pain for about 5 years, but became really ill may '08. in bed for months until prednisone was prescribed by my angel of a PCP. 2 months later Rheumy #2 wanted me to taper off the pred immediately. back in bed! then in May '09 I needed to help my dad get through his wife's cancer and death. she died in June and Rheumy took me off the pred then. why? because although I have ana of 1:180 +, malar rash, severe joint and super severe deep muscle pain and weakness, fatigue, photo sensitivity, chest pains when I breath... he was sure it was fibromyalgia alone. now the only time in the last 2 years I can function at any level was on the prednisone. no matter what I said to the rheumy he just told me that I had a bizarre form of fibro. ??? also once he got frustrated with my protests and told me I was too much of a control person and just didn't like not being able to control how I feel. well no $#!^ sherlock, who would.

cut to last Monday - went to the SIU school of medicine to see a rheumy there. come to find out - my rheumy (of whom I spoke above) ran the antibody tests IN DECEMBER OF '09!!!. not only do I have a pos ANA but I have a positive anti-sm.!!! of all the tests you can take for lupus that is the most conclusive. not having a positive anti-sm does not mean you do not have Lupus but it is extremely rare to have a positive anti-sm and not have lupus.

I am just sure my rheumy had really good reasons why he never told me about the anti-sm but I tell you one thing. my dh wants me to make an appointment so he can go with me. I do not have the money to bail him out of jail so, I don't think so.

so here's the bottom line. I am much worse than I was a year ago so how much damage has been done by not treating me? I know my family has suffered! I wake up sobbing my upper arms hurt so bad when I roll over.

the new rheumy is going to support my PCP for my care. thank God. plaquenil with pred until is kicks in is the plan.


sorry - I didn't mean to push you off your soap box, I was just trying to join you :) mad smhair
Marie- 45, mother of 6 & grandmother of 2



"All we have to decide is what to do with the time that is given us."" ~ Gandalf


louise47
Regular Member


Date Joined Feb 2010
Total Posts : 138
   Posted 2/15/2010 10:29 PM (GMT -7)   
OMG! I'm a little late but I am joining in too. What is wrong with these doctors? I am getting worse by the minute and they aren't treating me with anything but Tramadol which is worthless!!!! when I have the fatigue and muscle pain. GERRRRRRRR

BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 2/16/2010 12:47 AM (GMT -7)   
I have to agree my rheumy doesn't believe in Fibro and he's a professor and it's scary that he's teaching rheumy's under this belief. I would have never known that i have Fibro as well as what ever arthritic condition i have. if i hadn't gone to another Rheumy. You have to find one that will help you live life the best you can.

Good luck

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.


louise47
Regular Member


Date Joined Feb 2010
Total Posts : 138
   Posted 2/16/2010 3:16 PM (GMT -7)   
Thanks Bryan

lifeispeachy
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/10/2010 5:28 PM (GMT -7)   
At least you're getting Tramadol, Louise! I'm in constant pain and was told to take Tylenol... and if it still didn't subside, then I'd have to go on Prednisone. ::sigh::
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