PCP has suggest rheumatologist..thinking it may have been Lupus all along...rash ?s
I'm glad to have found you all. I've lived with another chronic pain condition for 10+ years, so I know for sure, if I want to learn the best place to come is to those that live this every single day.
My PCP just suggested I see a rheumatologist and she is suspecting Lupus. I had an elevated ANA many years ago and Sjogren's was ruled out and then I was diagnosed with Chiari Malformation, so the ANA fell by the wayside as the chiari explained many of my symptoms. I have to wonder, now, if lupus has been there all the time and if it is actually responsible for some of my symptoms.
First, I've had profound swelling and stiffness of my knees and ankles with pain in all four. I also always have a bright red chest with patches of redness on my face and neck. I've lived with horrible pain in my long bones for 10 years now and I have severe fatigue for that long as well. Most mornings when I wake, I feel like I have the flu. Something new is a rash on the inside of my knees and i have questions about this one.
This new rash almost looked like pink freckles when it started, but there were a TON of them and that part of my skin hasn't seen the sun since last summer. The next thing I noticed was I couldn't shave over them...they are raised and rough and they turned more brownish as time went by. If I shave over them, most of them are bleeding everywhere. This lasted about 2 months. Right now, most of them have literally flaked away.
Does this sound like a lupus rash??? Also, my right knee has the worst of the rash and I've been having tons of trouble with that knee. I need a replacement at 43 years old. Does the rash appear over joints that are being most affected by lupus??
My PCP has ordered the screening blood work that I'll have done this tuesday and then we shall see about the rheumatologist based on those results.
Any insight would be really appreciated. While I'm afraid of the diagnosis, I know how important it is to take care of this before it affects any of my organs. My last urine was abnormal with casts in it and I do get fleeting chest pain.
Thanks so much for reading and for being here. I look forward to learning from all of you.
Leslie in pittsburgh
Leslie, welcome! You may have to be patient on replies to your post, since our members may be away for the holiday weekend.
Did you have surgery for your Chiari? That diagnosis keeps being tossed around for my daughter, since she has many symptoms that are consistent with Chiari or tethered cord, or even craniocervical instability.
I read somewhere once that the average time between onset and diagnosis of SLE is 10 years! And that people see something like an average of 5 doctors to get that diagnosis. I'll have to find that site again to confirm my memory. The point being, it is entirely possible that you have had lupus all this time and not been diagnosed. Rashes aren't a major problem for me, so I will let others address that issue. When I get a rash on my hands from the sun, my knuckle joints do get very tender, but that is the only time I have a rash associated with joint pain. It's great that you have a PCP who is on the ball and checking you out. It sounds like your joint pain alone should get you a ticket to the rheumy - even if your labs are normal. A negative ANA doesn't mean you don't have lupus. Check out the many "stickies" in each of the forums for A LOT more information on this. I hope you stick around and let us know the outcome of your search for answers.
Thanks for the Welcome Gizmo =)
I've had the decompression and the tethered cord surgery and I've been diagnosed with cranial settling (I have Ehlers Danlos as well), so you can understand how I've ignored some of these symptoms or blamed them on the other conditions. I'm not a doc, but I have become very good at spotting Chiari on an MRI and I'd be happy to take a peek at your daughter's. Where are you?? I might be able to help you find an expert too. let me know! makes me feel useful to be able to help.
The swelling and stiffness is what is really remarkable now. One knee is really bad and I had a scope in January and I know I need a replacement, BUT the other knee actually swells WORSE. and the ankles are swelling at the same time. This is what my PCP noticed...along with my burning red chest that has nothing to do with the sun!
The 10 years is something....wouldn't it be crazy if this has been a big part of my pain the whole time?? I just changed to this PCP and I was shocked she was so "on top of things" on our very first visit. Honestly feel lucky to have found her...not easy to find a PCP that isn't overwhelmed by all my issues.
I just had a shunt placed about 10 days ago so my headaches are better, but then the bone pain returned with a vengence. I gotta say, that is probably the worst....this deep, aching pain in my bones. and with the headaches improved, it just made this pain feel even more fierce.
Last edited by leslieann226; 07-02-2011 at 04:00 PM.
My daughter also has EDS, and we have been out to Baltimore 3 times to see specialists. Her MRI has been looked at by 2 neurosurgeons, one of whom specializes in EDS. He's in Bethesda. She is also in contact with an opthamologist in Dallas who has EDS and severe headaches and has experimented (on herself and her affected children) with Diamox, a diuretic used for glaucoma. My daughter has been taking Diamox since January for the headaches and gets (temporary) relief within an hour. Are you going to the EDS conference this month? All 3 of the specialists she sees on the east coast are speaking there.
Wow, so you had all 3 complications of EDS!! That is frightening, but I understand that they often go together. My daughter knows a girl her age who also has all 3.
It's hard to find docs who know about EDS. My daughter also has an autoimmune disorder and we found a rheumatologist who is at least willing to learn, keep an open mind, and has a sister with a related genetic disorder. I don't know how you go about finding a rheumy who has at least a little experience with EDS. You might ask your PCP for several names, and then make a meet and greet appointment or write a short letter with your history and see how they respond. You probably have WAY more experience in this than we do, as my daughter was just diagnosed with EDS 4 years ago.
Your symptoms certainly are similar to many folks on this site. I'm sure you'll get lots of good info when everyone gets back from their holiday. It's actually a good sign, I think, that it is so quiet. Some of the folks here are virtually home bound by their photosensitivity and pain, so hopefully their absence means they are doing something fun.
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Hi Leslieann, so glad to have you join our family. I'm sorry you are feeling so poorly and don't have the answers yet. I encourage to to read everything you can and ask all the questions that come to your mind and hopefully someone will be able to help you. I get rashes mainly on my legs and arms as a reaction to the sun. I have gotten these for years. My face gets the butterfly deep red flush that raises sometimes, but rarely pimples on it. At most three blisters at a time. I wish you the best in your search ! Glad to have you join us dear.
Hi there! I just wanted to take a moment to welcome you to WHL. Please make yourself at home. Feel free to look through old threads or start new ones if you feel like it. I am keeping this short because I am on my phone and it and I do not always see eye to eye!
Thanks again for joining and I look forward to getting to know you
there is 63 auto immune disorders.
there is a thread with all of these listed, and a brief summary of them.
i am sorry you have multiple problems, many of us have also have multiple issues.
As Steve said many of us have multiple issues. Lupus is also sneaky. At least as far as I am concerned. I had it since I was a teenager and did not know it. Chalked it off to "growing pains". Finally diagnosed at 61, so you never know.
As Mari(tgal) said read the threads; they help a lot
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A large warm welcome to our family of WHL and there's so many threads to learn the condition from concerning A1 diseases to Autoimmune Diseases.
The symptoms you suggest of swelling of the knees and ankles is a main issue with the Disease and a thread was done actually about your red chest which is pigmentation from Lupus. The fatigue with Lupus sufferers never ends besides a foggy brain and also a flare up on the skin.
The rashes come when Lupus is working it strongest and i know how you feel because i'm 43 this year and was born with it but never diagnosed till 3 yrs ago with things concerned to the lupus and a year before that i was diagnosed with Raynauds with a dermo.
I do hope the blood shows things so you can get sorted for seeing a rheumo but i'll state this incase some readings show negative, Lupus fluctuates and plays with the blood so you could have readings come back negative when they could be positive and there's so many member's always having to go back and get their bloods tested again and it can become quite flustrating at times.
Leslie what ever dioagnosis you have we're a worldwide site and such carrying member's who will help in as best way possible with full support.
Luv Terry xxx
Last edited by Peridot20_Gem; 07-03-2011 at 09:49 AM.
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thanks so much to all of you for the warm welcome and encouragement....I'm getting my blood work in the morning, so we shall see. I'll share when I get the results. And Gizmo...I'll be in touch about your daughter
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