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Lupus... MCTD...  Seeing Rumitologist Tomorrow... Lupus... MCTD... Seeing Rumitologist Tomorrow...

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  #1  
Unread 04-05-2005, 08:27 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Just wanted to update you all and let you know what is going on. My GP has refured me to a Rumitologist and I will be seeing them tomorrow.

My GP, Wound Specialist & Occupational Health doctor all feel that I have either Lupus or MCTD.

My GP has ran a bunch of test & stated he can't do anymore & that it's time for me to see someone else. My sedrate is in the low to mid 50's normal being 15. My ANA came back at 680 normal being 80.

The wound specialist & Occupational Health doctor both feel these numbers are not high as a result of my incision still being open, but are high do to other reasons. They both advised that these conditions would explain why my incision is just not healing. As I seem to be at a stand still with it closing.

I am nervouse about my appointment tomorrow as I have been feeling like a hypocondract the past few months. The Occupational Health doctor assured me yesterday that I am not, and if the Rumitologist does not listen to what I am saying or does not find anything to call her and she will see to it that I see someone else.

I still have been running a low grade fever since mid Jan. My body is all inflamed & swollen and my joints just ache to the point that some days I just want to cry. (Yesterday was one of those days). My hair seems to be falling out more then normal. I have been having problems with my finger tips & toes getting so cold I can't seem to warm them. My pain in my pelvic are does not want to go away. Some days it even affects me walking or my balance. My eyes seem to burn every time the light is too bright or I go outside. And I have started to get weriod headaches. Somedays I am so tired it is just a challange to get done what I need to do. I have the most energy in the morning. By mid day I am toast.

The occupational health doctor stated I am having a flare up, and that the rumitologist once he figures out what is going on they should be able to give me something to help. She also asked me if I could reduce my hours at work from 40-30 or even part time. But at this time it just is not feasable money wise. Dh said we may have to make it feasable depending on what the doctor says tomorrow.

I just wanted to update you all. And if anyone has any info I Lupus or MTCD that they would like to share I would greatly appreciate it.

Please wish me luck tomorrow as I don't know what to expect when I see the rumitologist.

Kim
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  #2  
Unread 04-05-2005, 10:16 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

(((Kim))))
Oh darlin...I was wondering why I hadn't heard from you lately, you don't feel well. I am glad that they are sending you to see a rheum doc..sed rate is a measure of inflammation, and/or infection, but they haven't found one in you yet and especially with all that joint pain etc. You know, this reminds me of a reaction I got to Bactrim (sulfa drug)..the reaction is called serum sickness. About 3 weeks after I started taking it (I had finished it) by 5pm, I would run a fever, my joints would swell and hurt so bad, I could not get upstairs in my apt. and by morning when I woke, the fever would break and the joints stopped hurting. This lasted for 7 weeks and it happened EVERY night, no matter what. Even if I took tylenol at 4pm, at 5pm it would start..there was no preventing it. So sulfa drugs are high on my allergy list. My DD had the same reaction to Cefzil when she was 5. Couldn't believe it! One night she came crawling to me, crying cause her legs hurt and she had a fever..knees were swollen, the whole nine. Just weird that she and I had the same reaction. That is exactly what it sounds like to me. Have you taken any antibiotics in the past few months? Might be worth mentioning at your appt. I pray that all goes well and that it is nothing major. Please let me know how it goes. i will be thinking about you. And Steve is right (write it down, might not happen again..lol) you might have to make if feasable if your health is compromised.
  #3  
Unread 04-06-2005, 04:10 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Marian,

Thanks for responding... Right know I am just starting to get depressed & fustrated with all of this.

I saw the rheum. doctor today and kind of feel like I was blown off. He asked me a bunch of questions about symptoms and did some what of an exam. The reason I say some what is because he did not examine me where I have the greatest amout of pain, my lower groin area. Where the crease is with the legs.

He said he does not think it is MCTD or Lupus, but said more blood work needs to be done. So he took 6 tubs of blood for a bunch of test & is repeating some of the test that my GP took.

He said he did not see any swelling in my hands, although it was first thing this morning & the swelling does not normally appear until latter in the day. He said I just have fat fingers... (Sorry, but I don't think they just got fat over night or within the past 3-4 months) I can get my ring on in the morning with out any problem but by evening I can't get it off. I also have swelling in other areas of my body.

So anyway I am to see him again in two weeks on April 20th for the results. Until then I am just stuck waiting... I am so tempted to call my GP and ask him to please get me into see a pain specialist. I just can't deal with the pain much longer. It is affecting me physically & emosionally. I just got pulled into the office for making a few dumm choices the past 3-4 weeks and my manager stated straight out this is not like me as I am so detail orentated. She knows it's because of the pain I am in.

I just don't know what to do.

Kim
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  #4  
Unread 04-06-2005, 05:53 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Kim,
Doesn't sound like this doc visit was worth the trip to me. you have fat fingers...I would have gone off..LOL...You can't wait 2 weeks in pain like this. I would call your doc and get into PM until they can figure out what is going on with you. Did this rheum doc have any explanation for what is going on with you? Hun, I know you are frustrated, God knows I do. I wish there was something I could do to help.
  #5  
Unread 04-06-2005, 06:12 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Marian,

No, he had no explaination besides the incision causing all of my problems... (By the way he did not even look at the incision either).

Truethfully, I think what ever is going on is slowing down the healing of the incision. Just my thoughts. The wound specialist stated the past 2-3 weeks it has not gotten any smaller, just a hair bigger.

DH says he does not understand how I can have pain in the groin area since I have nothing left inside of me. But I do. I still can't sleep on my right side because of the pain. I just wish I had some sort of idea what is causing the groin pain, the fevers, and the bad body aches as well as swelling.

I hope the GP will not give me a hard time about wanting to see a PM. But I just can't deal with the pain anymore. I plan on calling there office first thing tomorrow. I hope he does not make me come in.

I will let you know what he says.

Kim
  #6  
Unread 04-06-2005, 06:31 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Yes, please do let me know what happens when you call. I am sure he will want to see you.'
I am a little peeved about this doc you saw today...sounds like he was blowing you off and dropped the ball big time.
  #7  
Unread 04-06-2005, 06:59 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Hi Kim
I am sorry your appt. didn't go well.Some dr's just don't get it. You wouldn't have been sent there if your GP didn't think you needed to go. That dr. should have listened and examined you thoroughly. I hope your blood tests give you some answers and choices for treatment.
Good luck Kim. I know how frustrating it is just to wait. My open incision took its time to heal too, but I think alot of it was due to stress.One day before long you will turn the corner and be able to enjoy a painfree life. I hope it comes quickly for you.
s
Peggy
  #8  
Unread 04-07-2005, 04:32 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

I called my GP's office during lunch... And spoke with the nurse... She said she would check with the GP to see if it was okay for me to be refered to pain managment. She called me back & stated the GP gave the go ahead, but she tried calling and they dont take my insurance... I could of told her that... She tried calling my old PM doctor who is on the other plan. She said that I need to call my insurance to see if there is even one in Green Bay that I can see.

Well I called the insurance and there is one Guy in Green Bay, or I could travel to Appleton, which is about 25-30 mins from my home & they have a male & female pain managment doctor there. I think I would like to see a female if I can... Just plan seems they are more understanding about these issues. I figured I would be proactive & I called there office just to see when they had openings. The receptinist said they maybe able to get me in on the 21st or if they have any cancelations they could put me on the list, possible if the GP calls she may be able to push the appointment up some as well. I told her I will have my GP office call tomorrow to set up an appointment. I think the travel may be my best bet at this point. Have not had much luck with the doctors here.

So hopefully I can get in with in the next two weeks. I have enough pain meds to last me until then. I have been afraid to take them because I always have this fear the pain is going to get worce & then I will not have anything to help.

Kim
  #9  
Unread 04-07-2005, 05:13 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Kim
I'm sorry the doc visit wasn't more productive. I hope you can find a good PM doctor to help at least make you more comfortable.

I do have a suggestion regarding the swelling. I have major issues with a swelling stomach, but whenever I see my accupunture doctor on Fridays, my belly is not at its most swollenness (is that a word? ) as I see her earlier in the day, I have a short day at work on Fridays and I haven't eaten much. This past Sunday I had dh take some pics of my swollen stomach with his digital camera so that the doc can see firsthand what I am talking about. She thought this was a good idea and I am hoping when I show them to her tomorrow it may give her some more clues. Sooo....when you notice some major swelling, perhaps you could have dh snap some pics. It's worth a shot, or picture , in this case. It certainly can't hurt. As long as I have been dealing with the pain and swelling I can't believe that I didn't think of it sooner.

  #10  
Unread 04-07-2005, 07:21 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Kim,

Thank you... That's a great suggestion... One I never would of thought of. I will have DH take some pictures before I go see the Rheum. again on the 21st.

I too am hoping I can get into a good PM doctor. I just have not had much luck w/doctors in the town I live in so I am going to take the 25-30 min drive in hopes of good care.

I hope your pictures provide some awnsers for you. Good luck tomorrow!

Hugs,
Kim
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