I have learned my lesson. Listen to the Veteren's on this site!

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freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 12/10/2009 4:52 AM (GMT -7)   
Hi everyone
Just wanted to let you know that after 2 yrs I am looking for a new Rheumy. I was told from the beginning that it was important to get someone who is knowledgable in MCTD. I thought my Dr. was the answer because of his position etc. Well I admit he was a great Dr as long as I was feeling well, but his attitude, lack of general caring and wrong diagnosis has come out loud and clear these past few months. To bring you up to date, in September I saw him and told him my knees were swelling and my feet would hurt some mornings when I walked around. His answer was lose weight, fibromyalgia, took me off Chloroquine up'd my Mexthotrexate to 25mg once a week and keep my prednisone taper going (( was at 4mg).
My feet and legs were getting worse. I would walk and stand one day then couldn't the day after. Also, my liver became inflammed in September after upping my methotrexate. I spoke to him regarding this, so he told me to reduce the methotrexate back to 20mg and to continue my taper. Well then just started getting bad almost on a daily basis. I got an appt to see him. I again pointed out my swelling knees, and showed him my right ankle (swollen). I told him about the pain in the bones of my feet and tightness in my ankles. My mouth was full of sores and my hands started swelling again. So his answer? he put me back on 250 mg daily of Chloroquine (previous it was 500mg 4 days a week). Took me off methotrexate and told me to continue my taper of prednisone.

Well things progressed terribly worse and all he did was tell me to up my prednisone to 10mg. Well I had to see him in middle of November because I was immobile. I couldn't walk on my feet and my knees killed. My pinky finger on one hand was purple at the joint. And he looked
at my knees and said "oh yes looks like fluid" so he took some for analysis and gave me cortisone shots in both knees. He said finding the fluid is a good thing "Because now he knows how to treat me"??????- I was floored. I left and the next day didn't feel alot of pain in legs, but then all
hell broke loose. One knee started with constant throbbing that I could stop. I called again only to be told that he couldn't believe I would have pain like that after the injection and to up my prednisone to 20 mg. No painkillers or anything were prescribed.

Well to bring you todate. I ended up back last Friday and took my husband so he could see what this guy was like. Again, he admitted about the fluid and started to tell my husband how this fluid is a good thing. He drained some again and gave me another shot of cortisone in my bad leg and sent me with Percocets and told me to stay off it for the weekend. I am to up my methotrexate to 25 mg once a week; stay on chloroquine, but reduce my prednisone to 10mg. I asked about my hands and ankles swelling. He dismissed them. So now I spend 5-6 hours every morning trying to stop the aching and pain in my feet and ankles. My knees do not flex much and I keep getting a shooting pain behind one that will actually make me cry out loud. My pinky finger is swollen so badly and I can't make a fist. I have made the decision to go elsewhere. But in the meantime, could anyone give me suggestions on how to handle this pain with my feet and ankles. I deal with my hands, but I don't know what to do that will help me walk. Is there any kind of painkiller that is prescribed for this? Thanks for listening
and for warning me

Liz


MCTD 11/07-Omeprazole 20mg;prednisone 10mg;Chloroquine 250mg; methotrexate 25mg once per week;folic acid 5mg 6days/wk;wellbutrin 150mg.2x day; Ativan 1-6 mg as needed; imovane 10mg nightly

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/10/2009 8:28 AM (GMT -7)   
Liz,

Your worst pain is the pain-in-the-neck doctor you're going to and I second your decision to find a new rheumy, as fast as you can. I believe that suffering unnecessarily because of a doctor's incompetence or uncaring treatment is just awful. I hope you can get into someone real soon.

As far as painkillers go, I can't give you advice there. Do you have a PCP that will help you while you're between rheumy's? Do you need a combination of diuretics and pain meds? I don't know...just throwing out ideas.

Good luck getting in to see someone else.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 12/10/2009 9:57 AM (GMT -7)   
Hi PATTYLATTY

I am seeing my GP tonight to discuss what I can take to get me over this hurdle. I have a program I am using through my health benefits. It is called Bestdoctors, and they will actually take my medical charts to a round table at Harvard Medical school and redo pathology etc then submit questions to specialists throughout the world regarding my diagnosis. Their findings are sent back to me to determine whether I have been misdiagnosed and also the treatment plan I should follow. They further refer me to the hight qualified in my illness in the geographical area I choose. Right now I trust my diagnosis as I had 2 opinions, but I have opted for the referral service right now so that I may get someone who is up-to-date on the meds and treatments for me. I am just hoping that damage has not been permanently done. I will let you know what transpires over the next few days.

And thanks for that encouragement, it is really needed.

Liz

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 12/11/2009 7:04 PM (GMT -7)   
Gosh... I feel so bad for you... I know what it is for your knees and hands and fingers to swell up...
When this happens to me... and I don't think mine is as bad as yours... Hot water is the only thing that helps me.....
I sure hope you get some relief.....

freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 12/12/2009 5:38 AM (GMT -7)   
Thanks Weleetka
I use heating bags and parafin wax on hands, but the bones in my feet and ankles just kill me everymorning. I did go to GP who gave me some tylenol 3's, and I have got names of Rheumy's in my area so my GP is sending an emergency referral. I'm so angry at this other Dr. I just wish this wasn't all happening at a time of year when we all need that extra bit of energy and feeling good for the holidays. Right now, I am so down I can't do anything around my house. I haven't been shopping for gifts and I used to love Christmas.

Liz








MCTD 11/07-Omeprazole 20mg;prednisone 10mg;Chloroquine 250mg; methotrexate 25mg once per week;folic acid 5mg 6days/wk;wellbutrin 150mg.2x day; Ativan 1-6 mg as needed; imovane 10mg nightly

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/12/2009 7:26 AM (GMT -7)   
I am stuck finding a new rheumy because mine left the state. I suggest that you limit how much you stand/walk for now and maybe look into physical therapy in the pool as a method of pain relief and to keep your range of motion. I wish I had more advice but I definately agree it is time for a new rheumy.
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, Sjögren'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


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 12/12/2009 11:39 AM (GMT -7)   
Redrose77

Have you heard of Bestdoctors.com?- this is how I am a list of Rheumy's in my area. This service will also send all your records to Harvard Medical School where they go over diagnosis and treatments then will consult with Specialists around the world for their opinions. A report with their findings is sent baclk to you. Some reports will be re-diagnosis and or treatment plans. I was going to do this part too but I figured I got 2 diagnosis of MCTD, so for now if I can find a Doctor that specializes in this, or 2 of the 3 overlaps then I will be happy.
I can't stand or walk much. I thought about pool therapy but would have to do it in hot water as I cannot tolerate a chill at all right now.
I thank you for you response and hope you get a new Doctor soon.

Liz

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/12/2009 5:39 PM (GMT -7)   
from my experience pool therapy is in 98-99 degree water which is very warm and feels very good on the joints.
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, Sjögren'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


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 12/23/2009 9:01 AM (GMT -7)   
Hi Redrose77
Sorry I didn't see your post earlier. I have just inquired about the pool therapy available in my area. Thanks for letting me know about the temp. because I would never have called.
Just to update all on what has been happening. I am still pretty much immobile, but just found out from my GP that a big part of the pain and stiffness in my bad knee is because of a large (4.8cm) Baker's Cyst!. So I have spent 4 months consistently going to and calling my Rheumy who saw my constantly swelling knees, and rather than him ordering doppler tests (he is a vasculitis specialist)he sends me to the family Dr to do it. Now the outcome is this cyst which can be aspirated by either Ortho Surgeon or a RHEUMATOLOGIST! Talk about going in circles. Well I do have an appt to see my Rheumy on the 30th, but I can almost guarantee he won't check my results until I am sitting in his office, so I know right now he won't do the aspiration next week. He will try to push it over another month or so. I do have another referral sent to another Dr and I am praying I get a call within the next month!
It is bad enough having to deal with a chronic illness, but not having a Doctor care about you is the absolute worst feeling in the world.

Well I will sign off for now, but I want to wish everyone great health and happiness for this holiday season and in the coming year.

Liz
MCTD 11/07-Omeprazole 20mg;prednisone 10mg;Chloroquine 250mg; methotrexate 25mg once per week;folic acid 5mg 6days/wk;wellbutrin 150mg.2x day; Ativan 1-6 mg as needed; imovane 10mg nightly

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/27/2009 11:11 PM (GMT -7)   
I would definately replace your doctor. If you were in Michigan I think I know a good rheumy but need a few more visits to be sure of him.
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, Sjögren'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


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 12/28/2009 6:27 AM (GMT -7)   
Thanks Redrose7
I feel better knowing this is others opinions too. I will be seeing my current Rheumy on the 30th and I hope this cyst can be aspirated right away. My Family Doctor has sent an emergency referral to another Rheumy who has an excellent reputation, but I don't expect to hear anything until the beginning of January. But what gets me is after an examination and recording my history since this past summer, my Doctor put on the referral that my MCTD is "uncontrolled". Gee I can't wait to hear what my Rheumy says about things this Wednesday. I will keep you posted.

Liz
MCTD 11/07-Omeprazole 20mg;prednisone 10mg;Chloroquine 250mg; methotrexate 25mg once per week;folic acid 5mg 6days/wk;wellbutrin 150mg.2x day; Ativan 1-6 mg as needed; imovane 10mg nightly

freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/11/2010 6:59 AM (GMT -7)   
Hi Everyone-
Well, I have been back to my Rheumy twice since my last post. On the 30th, I got confirmation that this Doctor has no time or interest in dealing with my issues.
I told him about my Baker's Cyst and he dismissed it. He looked at my blood results and fluid results (taking from knees) that were done in Nov and Dec 4th, obviously for the first time and got angry. He started to cover up the fact that he had not bothered to check on these prior, by saying that he has been trying to figure out "what we are missing". Aside from my sed rates spiking between October to November, the cell count in my knee fluid was incredibly high. Apparently, noone should have more than 2000 cells in the fluid. My count was 50,000. He saw that my knees were still swollen and I again told him about my ankle pain and finger joints. Well, he removed more fluid, and said this will help my Baker's cyst and gave me a double dose of Cortisone. Then he again asked me about my psoriasis (which I brought to his attention on every visit), then he decides that he just figured it out.

My new diagnosis is Psoriatic Arthritis!- I asked him if this means that I in fact do not have MCTD, and as usual he dodged the question by saying "You have Psoriatic Arthritis now". He gave me instructions to wean off Prednisone, Stop Chloroquine, continue Methotrexate and gave me a prescription for indomethacin, but did not clarify dosing instructions, because as he was rushing out he informed me that " I have to go, I have a patient that is on a wheel trains schedule"...... I am sorry, but my reaction was WT......!

I went home, and of course spent my New Years trying to nurse these Knees that were ignored for months, but would not start the NSAID because I knew I had to see him for follow up on Jan 8. Which I did. I was his first appt for the day, there was noone after me waiting to see him, and he still managed to rush through my appointment. I was able to question him on the diagnosis and whether this was instead of MCTD or on top of. His reply "well when you first came you presented with the symptoms and anti-bodies needed for MCTD, BUT it never progressed. I am confident you have psoriatic arthritis now. So basically, no straight answer was given.

Right now, I am waiting for this other Rheumy's office to open so that I can call to see the status of my referral. I did start this NSAID, but aside from headaches and a bit of dizziness, I really don't trust the Doctor so I am stopping it. Right now I am still on methotrexate, prednisone and I will go back to tylenol 3 if I get back pain, but I feel not too bad.

I will sign off now, but I won't list what I have because honestly I no longer know!

BTW Happy New Year to All-

Liz
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