Update-Saw my PCP

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antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/3/2010 9:48 AM (GMT -7)   
Well I went to see my PCP yesterday to discuss my test results.....she showed me the results and it did not look good to me. According to the person who processed the RA test....less then 15 is negative...15-25 is low....25-35 is moderate....35-45 is high and over 45 is extremely high. Well mine came back a 57, which is why they are suspecting at least one other autoimmune disease, if not more, besides the RA. The one's the tester had indicated as possibilities were Lupus, sceleroderma, MTCD (I think) and Sjogren's. So, for good reason, my PCP is basically done with me. She has referred my to a Rheumy, but I can't get in to see him until August 3rd. His office is 90 miles away and the car ride will kill my back....but...what can I do. My PCP said once the Rheumy get's me all diagnosed and get's me on a drug regiment, she has no problem monitoring me and prescribing my meds. She will work with him on that, so I don't have to go that far all the time. I guess the really frustrating thing is there is nothing she can do for me now, while I wait to get in to the Rheumy. I kept telling her that I feel sooo awful....and she shook her head and said, "I know honey" then I would tell her aaalllll I do is sleep, but can't sleep for very long at a time because I hurt so bad....and again she shook her head and said, "I know honey" I could see the compassion in her eyes and I really like this doctor, but she just could not do anything! I just wanted to cry.....another month like this until I see someone and then who knows how long before I feel ANY better after that! I feel like my life had just stopped an is on hold right now.......We interrupt this life for a long pain and misery spell.....we will return to your life which is still in progress at a later time! And my poor hubby....he went with me and heard everything and was such a grump when we got home....snipping about everything! I finally looked at him and said....."this is all finally hitting you?.....just how bad it is?.....isn't it?" He just nodded and hugged me. Enough said!

Anyway.....thanks for letting me get this out! I am just so tired and so miserable and so very scared!

Love you all and take care everyone.....thanks for the virtual vacation and the bear story...they took my mind off of things for a moment!

Going back to bed!

Hugs,
Beckey

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 7/3/2010 10:41 AM (GMT -7)   
Hey Beckey , Sorry you had such a rough trip and that it was painful for you , your very brave to persevere like you are . Yeah thats the thing Beckey our health becomes our life , becomes our job . All our appointments are health related , the bills , the phone calls and yeah its really tough , but keep the faith it can get better and since this is the only game in town whats the alternative ? Also there is always the chance things will improve , I keep that thought in my mind always and it has happened for me and can for you , just hang in there and good job venting and getting it out ! Feel better soon , Mikel

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/3/2010 11:20 AM (GMT -7)   
Beckey I am assuming there are no other good rheumy's available to you is that correct? I know August sounds like a long time off especially when you feel bad but it will get here before you know it. It does sound like you have a very good PCP, but they are so limited in many ways in the beginning when a dx is first given to a patient. I am impressed that she is willing to work with the rheumy to avoid long road trips, so yours sounds a cut above most. Count yourself very lucky to have a good PCP, they are hard to come by too these days.

Hang in there and lets hope the RA will be all you will have to deal with, thats enough for anyone. There is a lot treatment available in that area and lets hope they find what works for you soon. Take care.

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 7/3/2010 11:53 AM (GMT -7)   
I'm so sorry about your pain and your additional wait for help.  I too have been waiting on a Reumy apt and it has been since May!  That is not said to minimize your wait...but to say that we are actually lucky to be getting in at all.  I could easily have gotten in with one in Savannah, but he does NOT have a good reputation with the people I know and a couple of my other Dr's even said they do not like to refer to him.  I even had his referral one time and cancelled because the "flare" had ended and I thought I was just making something out of nothing.....NOT now though.
 
Thank God my flare is beginning to settle down and I wish the same for you.  It was honestly MONTHS this time before my hands gave me any kind of break.  The best med for me was the Utracet when it concerned the Reumy problems and I know that it has been discussed here so many times that I won't go in to it too much again.  It's only a suplement for other pain meds, but gives me relief I don't otherwise get....enough said there....
 
I just wanted to give you some glimmer of hope because the flare for me seems to have passed somewhat and I've actually had a couple of nights sleep without being waken by horrific pain in my hands.  Of course everything else is still there, but having the reumy problems subside just a little gives me hope.  I wish the same for you!
 
Good luck with your appointment and God Bless!  Mine is FINALLY scheduled for the end of July and I'm semi-anxiously awaiting the results.  I just hope that they will find an answer since the flare has passed.....kind of figures that the worst seems to have passed before the appointment, doesn't it?
 
Best to you!
Retired Mom


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/3/2010 12:13 PM (GMT -7)   
Will your PCP let you have some prednisone to get you through until you see your rhuemy?
Mine did and it helped a lot (of cource I had already been diagnosed).
I am sorry you are having to go through this. And unfortunately a six week wait to see a GOOD rhuematologist is normal.

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/3/2010 2:08 PM (GMT -7)   
Thanks everyone!

Mikel, yes our health becomes all consuming, when we are sick! I am keeping up hope, partly because of your good news and partly because of my wonderful second family here! Thank you!

Straydog, there is a rheumy a little closer...50 miles away...but my PCP did not like him...at all! She said he is not very compassionate or willing to work with her to help her patients! My PCP is wonderful, she prescribes my pain meds for my back and gave me prednisone for 20 days.

Retired Mom, OMG, I am sorry your wait has been so long. Kind of the same situation, there is a rheumy closer and I could get in sooner but my PCP does not like him at all....so I will wait! I haven't given up hope yet! Thanks!!

Sjkly, my PCP did give me prednisone for 20 days. She wants me off of it for a week or so before because she said it can skew some of the tests, so she does not want to mess with that. She told me if I need shots (torudal (sp?) or demarol) let her know and she will do what she can to get me to my appt.

Thanks for responding.....you all mean a lot to me! You're an AMAZING group of people!

Take care of you....all of you!
Beckey

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/3/2010 2:59 PM (GMT -7)   
Sounds like you should hold onto your primary care doctor-she sounds wonderful.
It also sounds like she is doing everything she can to help you.
I hope your rhuematologist is as good.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/3/2010 5:25 PM (GMT -7)   
 
 
   Dear Beckey,
 
     I am so glad you stopped by. *hugg*  I was wondering how things were going with referral. Though, goodness, I would never had thought you would have to wait so long to get in as a new patient. The though of you having to go 4 more weeks is heart breaking. I am so very sorry you have to wait so long. Do you have a "wet heat" heating pad yett? If not it might be a good idea. I can imagine your joints are aching very bad by now.
 
     I hate having my doctors so far away. It buggs me to no end. My primary care and now my spine specialists are in my little town. But the rest of them are waaay out in albuquerque!! Its an hour and half drive and we never know what areas will have road construction. It is so very frustraiting! Mostly because it is very hard to sit in the car for so long. I get a deep ache in my hipps. Also, having to go to a major city also means a major wait list. rolleyes Doesnt help atall. The eye surgeon, rheumatologist, endocrinologist, disease specialist and ENT are all in Albuquerque  shakehead Bringing terma care heat wrapps helps.. a little. Not much though.
 
     Most of all I am so sorry you will have to endure through so much pain before you can begin to get to a diagnosis, let alone a treatment plann. I will pray that this rheumatologist is worth the wait. Try to hang in there the best you can. You are in our hearts here.
 
*warm hugg*
   dani
 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/3/2010 7:22 PM (GMT -7)   
Thanks Dani, you are such a compassionate lady, as are most of the people here.....but knowing what you go through each day and you still have such a real concern for all the rest of the "family"!! I know that you are very young....younger then most of us and much younger then me, but somehow....you just give off that motherly concern!! I lost my mom 6 years ago and I don't know how many times I have said...."I want my mommy".....I am 44 and still "want my mommy!" Please do not feel like I am referring to you as old!!!! It is just that security that comes across in your posts!! You are incredible!! Not to say that everyone else isn't, because they are too.....but they are more like very caring siblings.....you have the motherly touch!! Your bumblebees are very lucky, because you are a TRUE mom!!!!

Sjkly, yes, I feel very fortunate to have ended up with the PCP I have. Before her, I had a male PCP, who was even better! He was the best doctor I have ever met in my life......he moved to another state and I cried so hard when he left! Still keep in touch with him....but was worried about my next PCP. We live in a VERY small town! 1 clinic with 2 doctors that are husband and wife and 3 APRN's that I can't stand....because they THINK they are doctors! Anyway....like I said....I was worried, but it all turned out VERY well!!

Thanks....my incredible friends/family!!

Hugs,
Beckey
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