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

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Unread 07-28-2005, 04:52 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

You are still VERY early post op. Fatigue is a very common complaint at this point in your recovery. The ladies on The Road are a year or more post op, so our experience currently may not be the same as you're experiencing now. Please visit thePost Op Forum to see how others are doing during this stage of your recovery.

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Unread 07-31-2005, 07:59 AM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

so sorry kim that you are going through all these complications..and not finding solutions..I know I had to go through a lot with my drs and trying to keep them on track and interested seemed to be a real issue..fat fingers..come on, drs know that fingers are the 1st thing to swell...I got 2 nd opinions and I am so glad I did..had I let the 1st uro I found do the surg repair I needed, I would have been in sad shape..lucky I found a wonderful compassionate dr who really built confidence in me that I would make a full recovery and I did..please keep pressing the issues and don't give up...hugs and prayers..kat
Unread 08-11-2005, 05:54 AM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Hi Kim - all your symptoms are classic lupus, I felt like I was reading about myself when I read your first post! I also have lupus and with the help of meds, I have been in remission for 4 years now. I am shocked that the rheumatologist didn't put the pieces together and give you a diagnosis. The cold hands and fingers sounds like Reynauds Syndrome, which is common with lupus. The blood vessels in the hands (and sometimes feet also) collapse and that's what causes the cold feeling. The hands will sometimes turn blue, red or white also. And at times, I have fat fingers too! It doesn't surprise me the rheummy was dismissive with you, most of them are when it comes to lupus, unfortunately, and we often have to fight for a diagnosis. Don't give up until you find someone that can help you, it's important that you be treated.

If you do have lupus or a related automimmune disease, your surgery may have kicked your immune system into high gear and you are more symptomatic now than you were before the surgery. Hang in there until you get some answers.
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Unread 12-23-2005, 04:39 PM

Here it is almost a year latter and I'm still dealing with the same problems. I had requested my medical records from my gastro doctor as we have moved & I have an appointment w/a new family doctor & am due for EDG for my Barrett's esophagus.

I found it intersteting that he had tested my sedrate at that time as well and it was what he thought to be remarkablely high @ 41 mm per hour. And he had recomended more test to be done but for some reason they were never done. (I don't know why)

I just find this rather intersting that I've had a history of a high sedrate for a while & it proves my incision was not the cause of the high sedrate, or at least not the only cause.

I am beging to wonder if I don't have arthrits along with the nerve damage as the weather has changed in WI I have no developed pain on both sides of my groin into my hips & joints in that area.

I have my apt w/my new family doc on 12/29. I pray that she can bring some awnsers as my family is all fustrated & some think its in my head. But to me this just proves its not.

Warm holiday wishes to all! I pray for awnsers & pain releif as we come to 2006.

Love to all my sisters!
Unread 12-24-2005, 02:52 PM
Lupus... MCTD... Seeing Rumitologist Tomorrow...

Good luck with the appt Kim! I do know the frustration of dealing with the same symptoms for a long time. I am still searching for answers, but along the way have found some clues, but still don't know why these things are happening . I have good days and bad days, so treasure the good ones and rest up on the bad ones.

to you and yours. I hope you have a wonderful Christmas. I'm sending xmas s to you.

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