PDA

View Full Version : New to this forum not new to immune diseases



ginlyn
06-11-2009, 02:22 AM
Hi all I am Ginlyn
In 1994 I herniated a disc in my neck, Since then I have been diagnosed with Degenerative Disc Disease in my neck from c3-t1, and Degenerative Disc Disease in my low back l4-l5. I was diagnosed originally with Fibro in 2000 because that was before the joint problems I then went back to Rhuemy who did not want to listen about joint problems and work for a new diagnoses. Found a new Rheumy the best who has since retired who listened to me, she dropped Fibro Dignoses to RA diagnoses on 9/11/2001. I have been trying to find a new Rheumy since then they are hard to find. I have since realized that a lot of my symptoms match more to Lupus then RA, Anemia, Rashes especially after being in the sun, except that I have rashes all the time on my hands, on the palm side on both hands on the palms, fingers with swelling, I have joint problems in my hands, swelling and stiffness, pain in both hands, wrists and knees and elbows. Sun sensitivity, my rashes on my hands get worse and then I get the butterfly rash on my nose and checks, and upperchest, some disc shaped rashes on my arms those are not all the time. Lesions in my nose or sometimes in my mouth. Fatigue, Muscle pain in my upper arms. I think that is all, So I am still on the Hunt for a new Rheumy who knows Lupus. To me that diagnoses scares me some, I had a 2nd cousin that died of complications of Lupus after have it for over 30 years. Thats it for now
Ginlyn:sleepy:

debbie-b
06-11-2009, 05:34 AM
Hi Ginlyn,

First I want to welcome you to your new family. I am a relatively new member here and I feel like this is my extended family.
I hope that you can find a new rheumy, that will listen to you and will do what it takes to get you help with your problems. It is very possible that you have both, RA and lupus. I have both, plus fibro and I am going to be checked for raynauds, scleroderma and sjrogrens. I am looking for a new rheumy as well, because mine is in such a hurry to get me out, he is dismissing my complaints, saying " that is normal with lupus, or that's lupus for you." I understand, that we don't have enough specialists and that they are very busy, but when I finally get in to see him ( after waiting for 3 months), I want to be able to talk to him and he should listen to me and help me.
Good luck to you.

Debbie

mountaindreamer
06-11-2009, 08:32 AM
hi ginlyn,

welcome to our little world-wide family of the sky....you will find so many people here who are certainly familiar with your situation, and who have incredible knowledge about our issues.

i am so sorry you are having trouble finding a rheumy...please keep trying, a good dr. is a crucial member of your team. As debbie said, you can actually have several overlapping diseases and syndromes....it is common for these to attach themselves to lupus. I suffer from lupus, fibromyalgia, RA, sjorgen's and raynauds....all are difficult to handle alone, and are really trying as a group.

i was diagnosed with fibromyalgia in 1996, in 2008 lupus was ADDED to the diagosis...fibro was not eliminated. I too suffer a lot with paind in my hands and wrists, redness in palms, etc. I really feel the fibro in my connective tissues around various joints, i can tell it is not in the bone, but in the small conntective tissue around the joint. In other areas of the body, the pain is truly in the bone/joint. i have learned to tell the difference and this helps my dr. in diagnosis and treatment.

so, explore around this site, ask questions, learn as much as you can about the various auto immune diseases, and search for a dr.

good luck, glad you found us.

dsunshine
06-11-2009, 11:57 AM
Welcome Ginlyn!
Sorry to hear about all the things you have gone through in the past few years. I know getting Lupus as a diagnosis is scary but once you are diagnosed then you can start treatment. As far as your cousin...that is a long time to live and endure Lupus. My great grandmother on both sides (father/mother) had Lupus and both passed on in there late to early 90's. I don't think from complications of Lupus at all. Lupus varies in all of us as so pleaes don't think the worse...think positive. It is not a death sentence.
Again welcome and I wish you health!

ginlyn
06-11-2009, 05:37 PM
Hi Ginlyn,

First I want to welcome you to your new family. I am a relatively new member here and I feel like this is my extended family.
I hope that you can find a new rheumy, that will listen to you and will do what it takes to get you help with your problems. It is very possible that you have both, RA and lupus. I have both, plus fibro and I am going to be checked for raynauds, scleroderma and sjrogrens. I am looking for a new rheumy as well, because mine is in such a hurry to get me out, he is dismissing my complaints, saying " that is normal with lupus, or that's lupus for you." I understand, that we don't have enough specialists and that they are very busy, but when I finally get in to see him ( after waiting for 3 months), I want to be able to talk to him and he should listen to me and help me.
Good luck to you.

Debbie
Debbie b
I understand what you mean that I had a Rhuemy also that you were lucky to see and talk to for 2 minutes. The last time I saw one of my last Rheumy on October 31st I felt dismissed and that was the last time I went to her.

ginlyn
06-11-2009, 05:44 PM
hi ginlyn,

welcome to our little world-wide family of the sky....you will find so many people here who are certainly familiar with your situation, and who have incredible knowledge about our issues.

i am so sorry you are having trouble finding a rheumy...please keep trying, a good dr. is a crucial member of your team. As debbie said, you can actually have several overlapping diseases and syndromes....it is common for these to attach themselves to lupus. I suffer from lupus, fibromyalgia, RA, sjorgen's and raynauds....all are difficult to handle alone, and are really trying as a group.

i was diagnosed with fibromyalgia in 1996, in 2008 lupus was ADDED to the diagosis...fibro was not eliminated. I too suffer a lot with paind in my hands and wrists, redness in palms, etc. I really feel the fibro in my connective tissues around various joints, i can tell it is not in the bone, but in the small conntective tissue around the joint. In other areas of the body, the pain is truly in the bone/joint. i have learned to tell the difference and this helps my dr. in diagnosis and treatment.

so, explore around this site, ask questions, learn as much as you can about the various auto immune diseases, and search for a dr.

good luck, glad you found us.
So I have a question Phillis the constant red rash on my palms and fingers is partofthe Lupus? I have had this for as longasI can Remember. I asked one of my former Rhuemys what that could be from she said she did not know. She asked me why I have anemia? and told memy ESR is 3 times higher then it should be. Now you know why she is a former Rheumy.
Ginyn

ginlyn
06-11-2009, 05:48 PM
Welcome Ginlyn!
Sorry to hear about all the things you have gone through in the past few years. I know getting Lupus as a diagnosis is scary but once you are diagnosed then you can start treatment. As far as your cousin...that is a long time to live and endure Lupus. My great grandmother on both sides (father/mother) had Lupus and both passed on in there late to early 90's. I don't think from complications of Lupus at all. Lupus varies in all of us as so pleaes don't think the worse...think positive. It is not a death sentence.
Again welcome and I wish you health!
Thank you dsunshine

purple_butterfly
06-12-2009, 06:49 AM
This is certainly a difficult disease to diagnose and manage. Just when you think you have the symptoms on the run, another flare.
A good rheumy is so hard to find. I am still on the hunt for one that believes I am having a flare despite the "normal blood tests for someone with lupus". My current rheumy does not believe in the fibro diagnosis and feels that this is a diagnosis used when a doctor does not know what is wrong with you. Hence, my search for a new rheumy.
I hope you get some answers soon. At least then you can move on to treatment!!

mountaindreamer
06-14-2009, 06:22 PM
hi ginlyn,

i sent you a PM answering your question about the red rash....let me know how you are feeling.

Angel Oliver
06-15-2009, 03:08 PM
Just to say welcome to the forum and so sorry to hear of what you are going through.Hopefully we can all help you through this ....here...and chatting to each other...i find it helps to me...to get through my day.

lots of love
Angel.xxxxx

Saysusie
06-16-2009, 10:10 AM
Hello and Welcome to our family.
Lupus is such a difficult disease to diagnose because so many of the symptoms resemble and/or mimic other auto-immune diseases (of which there are about 80!). Many of these disorders can cause rashes. Did you read Mountaindreamers PM about the rashes? I'm sure that she answered many of your questions, but feel free to ask more if you need more information.
As has been mentioned by other members, finding a good rheumy is very difficult as many of them act as if they don't want to be bothered with us or that they don't believe us. Often, when finding a new rheumy is not possible, we have to become aggressive with our doctors, demand that they listen to us and that they take us seriously, and demand that they treat our symptoms appropriately. In order for us to do this, we've had to become experts on our disorders, their treatments, their medications (and side effects), and how the disorder affects us. Also, we've had to take someone with us to our appointments in order to help us to be our own advocates.
We, here at WHL, are here to help you do all of those things so that you are better able to ensure proper care by your physician. We are also here to help you in any way that we can, to answer your questions, give you information, provide comfort and understanding, and to let you know that you are not alone! Again....welcome!

Peace and Blessings
Namaste
Saysusie

ginlyn
06-18-2009, 07:08 PM
I think I may be in a Lupus flare but I am not sure but the symptoms are more then I am up to listing so I will have to get back to it another day.

ginlyn
06-18-2009, 07:15 PM
Saysusie and everyone who welcomed me I am sorry I have been slow at getting back to everyone, I just want to thank everyone for being so nice. Since I started on my illness journey in 1999-2000 an it looks like it is not over yet of all of the people and groups I have joined you have been the most welcoming and kind ever and as long as I am up to it I will be here often.
Ginlyn