Finally got an appt. with Rheumy.... but it's not until Nov. 9th!

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Regular Member

Date Joined May 2010
Total Posts : 200
   Posted 9/3/2010 5:58 PM (GMT -6)   
Hi guys, just me with an update....I was beginning to wonder if I would ever hear back from the office and finally got a letter in the mail today. I was expecting a phone call. I am glad they approved me but that is a long time to wait!

Do most of you see a Rheumy or just go to your primary care doctor? Who diagnosed you?

I am wondering now if I should just call my pcp and ask if he knows how to test for Fibro. I am sure I would get in much quicker... however, i don't really care for this dr. too much and don't want to change doctors right now. But I could still see him just to diagnose me and just keep my appointment with rheumy... it could be for a second opinion if need be.

argh.....I am just so impatient to find out what I have. But..... I guess I have waited this long...


Regular Member

Date Joined Aug 2010
Total Posts : 101
   Posted 9/3/2010 6:39 PM (GMT -6)   
Hi Bridget,

I started out with my PC doctor first being dx over the years with irritable bowel, chronic fatigue syndrome, migraines, anxiety, stress, and depression and constant chronic pain allover my body. about 2 yrs ago my mother was dx with stomach cancer and I had to take care of her and I became very depressed and the pain began to get worse. My mother passed away on 8-8-08 and after that all heck broke loose I became even more depressed my pain became even more worse and my PC would not listen to me when I told her something was very much wrong with me she just kept telling me i was grieving the loss of my mother and things would get better as time passed on, well it did'nt get any better and it has'nt so finally the pain in my back, neck and shoulders became so bad I could'nt take it I decided to go to a pain management doctor who finally referred to my Rheumy who dx me with fibro and things have gotten worse since then.

Sorry so long.

Dx: IBS, Severe Migraines, Chronic Fatigue Syndrome, High Blood Pressure, Low vitamin d levels, Anxiety, Severe Depression, ringing in the ears, dizziness, impaired coordination, constant chronic pain all over my body.

Meds: Lyrica twice a day 25mg, Cymbalta 30mg at bedtime with lunesta 3mg at bedtime, NUCYNTA 100mg 1 Tablet 4x's a day

Forum Moderator

Date Joined Nov 2008
Total Posts : 5923
   Posted 9/3/2010 6:47 PM (GMT -6)   

I was diagnosed by an internist/allergist. A friend had told me he was a great diagnostician and she was right! I hadn't even heard of fibro but he told me he thought that's what I had after looking at my chart and asking questions for 2 hours (I had a fat chart even in 1992!) He did the tender point test, too. He's been my PCP ever since. He did send me to a rheumy once and she agreed, but didn't think she could do any more for me than he does.

I can't believe you have to wait until November! That's crazy. What is this medical system coming to? I don't see anything wrong with going to a PCP first.

...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 9/3/2010 7:40 PM (GMT -6)   
Hi Bridget, I was diagnosed by a rheumy. You can call and asked to be put on
a cancellation list. Perhaps you will get in sooner. Wishing you the best of luck!

Hugs, Robin wink

Regular Member

Date Joined May 2010
Total Posts : 167
   Posted 9/3/2010 10:21 PM (GMT -6)   
Bridget,   It does seem like a long time, but I'm afraid I got ya beat. I finally was called and told I can see the only Rhuemy in town, get aload of this.....  drumroll please ~~~~~~~ ~~~  ~~~~~~~~~~~  March 17th 2011!! I really was pretty shocked. So I got on the phone and called 7 other ones in 2 nearby towns and one said January, but they were way more expensive, and I have no insurance. 345.00 for the first visit.  I'm hoping this isn 't the norm for rhuemys, the rest were also booked till next year.
So all I can do is call to check for cancelations, theres no waiting list. Gee I'm glad I'm not dying or something!!  I do need to find out how soon I will need a hip replacement.  My regular PPC already diagnosed me with fibro. I think its a good idea to ask your PPC if he or she can diagnose you, It can't hurt, and you may get some peace of mind. 
I am glad for you though about the rhuemy appt, and hope you can find out asap if you have fibro or not. I know it is so frustrating not knowing for sure.
Looking forward to your updates.
Blessings, Debbie S

Regular Member

Date Joined Jul 2010
Total Posts : 62
   Posted 9/3/2010 11:37 PM (GMT -6)   
I  had gone to my ppc first, thinking I knew I had carpal tunnel of the least of my symptoms and just tired of feeling so horrible all the time.  She said she thought I *might* have fibro and wanted to send me to a rheumy.  I believe that appt took me about 6 weeks to get in. 
The rhuemy dx'd me at that appt with not only the carpal tunnel I already knew I had, but with OA and fibro.  I think she could have knocked me over with a feather when she dx'd me with the OA and fibro.  Don't know what I was expecting, but that sure wasn't it!  She's been my rheumy ever since and I see her for all of my appts except my yearly physical.  Now it usually doesn't take me more than a couple of weeks at the most to get in when I need to see my rheumy, without a trip to urgent care. 

Regular Member

Date Joined May 2010
Total Posts : 200
   Posted 9/4/2010 4:20 PM (GMT -6)   
Debbie.... WOW! That is an extremely long time to wait!! I guess I can see that if he is the only one in town, but still..... I am in a similiar situation with not many to choose from. Do you live in a small town?

I guess the Rheumy would never know if I see my PCP first.... still have to wait until Tuesday to call and see if he even knows how to test for it.

On a slightly different note.... have you guys seen the newest diagnostic standards? A friend of mine sent me an article that said they are going to start to phase the tender point test out and use different criteria to diagnose Fibro.... i am not sure if that is a good thing or a bad thing! If I find the link again, I will post it on here.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17057
   Posted 9/4/2010 4:32 PM (GMT -6)   
I see a board certified Internist for my fibro and everything else I have.  He doesn't have a problem treating me.  And, if he felt I should see a specialist, he would refer me.  Works for me!
Forum Moderator/Fibromyalgia
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Regular Member

Date Joined Jul 2010
Total Posts : 36
   Posted 9/4/2010 9:24 PM (GMT -6)   
It is common for me to have a 3 month wait to see my PCP, let alone, a specialist!  I keep saying that if people really want government healthcare, this problem will only get worse!!

Regular Member

Date Joined Jun 2010
Total Posts : 197
   Posted 9/6/2010 4:03 AM (GMT -6)   
Long wait indeed.... I have a very dim view of any and all of the PCP's I have had or have. None of them seem to be good for anything except getting an antibiotic for a UTI or a referral to a doctor that is trained... That's a sad outlook but it's my experience.

I was diagnosed by a Rheumatologits and a fantastic one at that. Someone suggested a cancellation list and I thnk that's an awesome suggestion. I would also take the time to prepare yourself for the visit. Make sure you are keeping a journal daily of your pain, the level and places. Any and all thngs that seem to make you worse or better and get your list of questions together... I hate to say it but if this doctor does not take the time YOU need and take interest in your condition, you may find yourself waiting another 3 months to get into yet another doctor office. Remember, the doctor works for you, when often times they seem to believe that they should be in charge.... like my mom always told me... I am the boss of me... LOL.. I wish only the best of you.

This is a journey, a long and winding road....
Savella, Lyrica,Mobic,Tramadol,Flexeril,Omeprezole,Vitamin D3,

confused Okie
Regular Member

Date Joined Apr 2009
Total Posts : 164
   Posted 9/6/2010 8:29 AM (GMT -6)   
I once waited 7 mths to see a rhuemy that turned out to be a big disappiontment, lol. I have a great one now (waited 3 mths to get in and have gone to him 19 mths now) that I was referred to by my podiatrist. I no longer see the podiatrist, because he seemed to get angry when I told him the surgery for my PF didn't work. I go to my rhuemy again on the 20th, so glad.
I would say going to your PCP may help if they know what to rule out. Research all the test needed and go see if they will run them, it would get you one step further if you have the test in hand and it may even show something else. I can't remember all the things I was tested for, but some of them were RH factor, ESR, CRP, lupus, tick fever, brain scan, MRI' need to get started because if you wait till Nov and you have ins, you will start over again on your deductible in Jan. Hope your PCP can help.
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.

Regular Member

Date Joined May 2010
Total Posts : 200
   Posted 9/6/2010 3:49 PM (GMT -6)   
"confused Okie"... Hi! Actually, I have already had all of the testing done. I think I got everything ruled about but Lyme disease, which the neurologist was not concerned about at all. Maybe it is not real common here. If the rheumy wants me to get it done though, I will. But I tested negatiave on the ANA... also thryoid is normal, sugar is normal, B vitamins were normal (though B1 was a bit on the low side).... also got MRI of lumbar, c-spine and brain.... only found out I have a bulging disc in lower back... otherwise neck is normal, and no lesions were found in my brain, so MS was ruled out (I was concerned about that because my Aunt has it and I started with more neurological problems that have mostly gone away)

I will see if my pcp is experienced with Fibro and if not I will see the Rheumy... but I will not cancel the appointment with him. I do like the idea of being put on a cancellation list. The doctors here are not that great though (the pcp's) so I would not be surprised if he knows nothing about Fibro. Also, if all he does is the tender point test and I "fail" I might still want to see a Rheumy, since some people are saying that don't always have all the tender points.

Regular Member

Date Joined May 2010
Total Posts : 200
   Posted 9/6/2010 3:51 PM (GMT -6)   
oh, I also got the EMG test and nerve conduction test (so awful!)... and he said everything was in normal range. also, tested negative for rheumotoid arthritis, though sometimes I feel more like it is arthritis I have with the crampy, achy hands and pain near joints.
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