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View Full Version : PCP has suggest rheumatologist..thinking it may have been Lupus all along...rash ?s



leslieann226
07-02-2011, 03:31 PM
Hi All

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

Gizmo
07-02-2011, 03:45 PM
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.

leslieann226
07-02-2011, 03:56 PM
Hi Gizmo

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.

Gizmo
07-02-2011, 06:43 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.

lovedbyHim
07-02-2011, 09:04 PM
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.

tgal
07-02-2011, 09:23 PM
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

steve.b
07-03-2011, 01:02 AM
welcome leslie.
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.

again welcome.

Nonna
07-03-2011, 03:33 AM
Welcome Leslie

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

Toni

Peridot20_Gem
07-03-2011, 09:46 AM
Hi Leslie,

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

leslieann226
07-04-2011, 02:40 PM
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

Peridot20_Gem
07-04-2011, 05:07 PM
Hi Leslieann,

Do you get your blood work today because of the different country's it's hard knowing if your infront or behind.lol

Please keep we updated and i bet you can't wait yourself unless you've already had them.

Love Terry xxx

leslieann226
07-04-2011, 05:33 PM
I'm having it drawn in the morning....tomorrow morning July 5th =)

not sure how long it takes to get the results but my PCP has a website and I can see the results as soon as they get them

Peridot20_Gem
07-04-2011, 05:41 PM
I'm having it drawn in the morning....tomorrow morning July 5th =)

not sure how long it takes to get the results but my PCP has a website and I can see the results as soon as they get themLeslieann,

Oh well it's the 5th here now and 01:38am in the morning.lol

There's a few member's who can get there's on the website...i know my results through letters being sent to my GP to keep him updated but i've asked for print outs and my s.d of a rheumo won't do it but i'm lucky to have a great Dermo who's not pleased with him at th mo.lol

I'll wait to see what your results am mate. xxx

steve.b
07-04-2011, 08:30 PM
please ask for a copy of your results.
keep them, as they are your first complete set.
they are a good base line to compare all of your other results to.

Peridot20_Gem
07-05-2011, 07:56 AM
Hi Lesieann,

Please let us know how your blood works have gone and keep we updated please. xxx

leslieann226
07-05-2011, 01:13 PM
thanks Steve...I did request a copy be sent to me. The lab tech said they may be done by tomorrow but most likely, thursday the 7th, so now I wait. I'll share with you guys as soon as I know.

I have all these things I'm learning that might have been signs all along. I've had night sweats every single night for at least 10 years, protein in my urine on and off for many, many years and severe heat intolerance. How did no doctor every put these things together?? Frustrating to say the least.

Here's a photo of the rash I had on one of my knees....it's the pink/brown dots, not the spider veins. (I've had the veins since I was 15 years old) it's not the clearest photo, but it gives some idea of what they looked like. Most are gone now after flaking off.

3963

magistramarla
07-05-2011, 02:24 PM
Hi Leslieann,
Welcome to WHL. You are lucky to have a doc who is "on top of things". You have been given some good advice. Keep good records.
I hope that you are lucky, and soon get a correct diagnosis.
Hugs,
Marla

Peridot20_Gem
07-05-2011, 03:56 PM
thanks Steve...I did request a copy be sent to me. The lab tech said they may be done by tomorrow but most likely, thursday the 7th, so now I wait. I'll share with you guys as soon as I know.

I have all these things I'm learning that might have been signs all along. I've had night sweats every single night for at least 10 years, protein in my urine on and off for many, many years and severe heat intolerance. How did no doctor every put these things together?? Frustrating to say the least.

Here's a photo of the rash I had on one of my knees....it's the pink/brown dots, not the spider veins. (I've had the veins since I was 15 years old) it's not the clearest photo, but it gives some idea of what they looked like. Most are gone now after flaking off.

3963Hi Leslieann,

So more waiting mate for your tests but thanks for letting we know.

I've just been looking at your pic...for a start off your suffering with broken blood vessels which can disturb the heat to your body only the same as Raynauds people and DVT breaks the vessels like that, now that pic's got my imagination going.

Luv Terry xxx

Peridot20_Gem
07-05-2011, 04:11 PM
Leslieann,

Just been looking and it looks like dermatitis mate...i can't say one 100% as i'm not a doctor and it goes brown when drying up before flaking off, you should be seeing a Dermo really to help you get it treated. xxx

leslieann226
07-06-2011, 03:52 PM
Well, I just looked online and it says "negative" with no numbers next to "Ana Ifa,W/Refl Titer/Cascade"

I'm assuming when I get my copy in the mail, the actual numbers with be there...not sure why they aren't online.

Not sure what to do now. I wrote to my doc so I'll wait and see what she thinks. The swelling was terrible when I woke up this morning and I can't understand that. Why would it get worse while I'm lying down?? makes no sense to me.

I have an appointment next wednesday with the knee specialist to begin the process of the workup for the knee replacement. I'm thinking he may have some helpful insight. We shall see, I suppose.

Frustrated right now...and in pain =(

tgal
07-06-2011, 07:21 PM
Hi Leslieann

Often times if ANA is negative they never go any further (such as TITER and such). Negative is all that your report may say. I really hope that that you get some answer soon because the waiting game is always the hardest

Gizmo
07-06-2011, 09:04 PM
We've found out the hard way that getting the right diagnosis takes time, patience and research. Maybe you have an autoimmune disorder - maybe you don't. With all the complications you've had with EDS it seems to me that your collagen elasticity disorder could be messing with you. My daughter had severe knee pain for 9 months. It got so bad we had to pull her out of school, she couldn't put weight on that leg, and she would cry in her sleep because of the pain. The MRI was supposedly "negative" but we got copies later and discovered that the radiologist thought it was infected. Long story short, we found a surgeon who did exploratory surgery and found 2 plica (connective tissue growing where it doesn't belong) in her knee that were the cause of the pain. The geneticist who later diagnosed EDS said that happens with collagen elasticity disorders.

I don't remember - have you seen a dematologist for your rash? If it gets worse again, you should probably push for that. They can take a skin biopsy and maybe get some more information.

steve.b
07-07-2011, 01:05 AM
leslieann,
my wife has undergone a total knee replacement.
it was 4 weeks ago yesterday.
the after operation therapy is very intenseafter you get over that it isnt so bad.

she still plans on having the second one done in about 2 months.

i fully reccommend it.
it is painfull stretching torn muscles, but it is worth it.

Peridot20_Gem
07-07-2011, 09:12 AM
Well, I just looked online and it says "negative" with no numbers next to "Ana Ifa,W/Refl Titer/Cascade"

I'm assuming when I get my copy in the mail, the actual numbers with be there...not sure why they aren't online.

Not sure what to do now. I wrote to my doc so I'll wait and see what she thinks. The swelling was terrible when I woke up this morning and I can't understand that. Why would it get worse while I'm lying down?? makes no sense to me.

I have an appointment next wednesday with the knee specialist to begin the process of the workup for the knee replacement. I'm thinking he may have some helpful insight. We shall see, I suppose.

Frustrated right now...and in pain =(Hi Leslieann,

Your copy through the mail should be the same as what your viewing online and we all know the bloods can play up but i just hope you have'nt got it because it's one terrible disease at times and working with meds like other members do for relief is terrible alone.

I can't get my head around the same issue as you've pointed out my joints are swollen through the day but come more they're alot worse, unless it's to do with heat during the night.

It's making me wonder if your bloods come back negative again if your re-tested, if it could be possibly RA and it's really playing up bad and try and get your Doctor to send you for a full MRI scan to check your joints as well if possible.

Love Terry xxx

leslieann226
07-08-2011, 03:49 PM
I talked with my PCP yesterday and she still wants me to see a Rheumy even though the ANA was negative. She said they can be negative at times with autoimmune disorders and that the symptoms are enough for me to need to be seen.

She said they sent my info to the new doc and they will call me with an appointment date and time.

I don't want this diagnosis at all but at the same time, if there's something that can be treated and make me feel and function better, I am all for it. I'm pretty shaken right now....my ankles feel hot today and just ache so badly and my knees are huge. Sitting here with ice everywhere as I type.

Any secrets to helping with the pain would be much appreciated.

trying to be patient and hopeful,
Leslie in Pittsburgh

leslieann226
07-08-2011, 03:54 PM
Hi Leslieann,


I can't get my head around the same issue as you've pointed out my joints are swollen through the day but come more they're alot worse, unless it's to do with heat during the night.

It's making me wonder if your bloods come back negative again if your re-tested, if it could be possibly RA and it's really playing up bad and try and get your Doctor to send you for a full MRI scan to check your joints as well if possible.

Love Terry xxx


Terry...

My bedroom is freezing...always. it's the only way I can sleep. and I sleep with ice on one and sometimes both knees.

I did have an MRI of my right knee last october. Would an MRI show something like RA?? That was before all this swelling in the four lower joints started though. I had some swelling in my right knee, but not as bad as now.

leslieann226
07-08-2011, 03:58 PM
leslieann,
my wife has undergone a total knee replacement.
it was 4 weeks ago yesterday.
the after operation therapy is very intenseafter you get over that it isnt so bad.

she still plans on having the second one done in about 2 months.

i fully reccommend it.
it is painfull stretching torn muscles, but it is worth it.

Steve...

thanks for your reply. I am soooo ready for this knee replacement!! I see the knee replacement specialist this week and I'm hoping to do the surgery in September. I'm even open to have both replaced at the same time if he's willing.

Thanks so much for the encouragement. I'm way too young to have this much trouble walking. Give your wife my best....hope she is doing great!

tgal
07-08-2011, 04:06 PM
Hi there,

The MRI question is a good one. MRI are SUPPOSED to show the damage to the knee but often times they do not. Some doctors prefer using an ultrasound on the but it is just doctors preference. Also, you say it was before all of the swelling so there may not have been anything to see last year. It might be time to go back to a doctor and have it looked at. Keep us posted!

leslieann226
07-08-2011, 04:58 PM
thanks for the advice. I'm going to a knee doc this week that only does replacements and he will more than likely be doing another one. His secretary also mentioned a possible MR-arthrogram ....not sure if this will show the inflammation, but I'm going to talk with him about both knees and the swelling.

steve.b
07-09-2011, 04:19 AM
with regard to getting both knees done at once.
my wife was considering it. but it was not really an option.
the government is paying for her ops. and they refuse to do both together.

after seeing the rehab, i agree do not do 2 at once.
you need the support of 1 good leg to help the quicker recovery.
the muscle is cut to allow access for the operation.
in the first 6 weeks is when all of the scaring of this cut muscle happens.
after 6 weeks, if you do not have sufficient movement, the chances of full movement is dramatically reduced.
one of the other patients who had his operation on the same day as cherie, is about to have his knee reoperated on.
to cut the scar and break open the muscle, so it can reheal properly.
having both knees done at the same time, doubles the risk of having this second operation.

talk carefully to your doctor about this risk.

leslieann226
07-09-2011, 01:12 PM
Thanks so much for the info Steve...I'll be sure and talk with the doc about it.

Gizmo
07-09-2011, 08:36 PM
thanks for the advice. I'm going to a knee doc this week that only does replacements and he will more than likely be doing another one. His secretary also mentioned a possible MR-arthrogram ....not sure if this will show the inflammation, but I'm going to talk with him about both knees and the swelling.

When my daughter had the arthrogram of her hips, the ortho doc ordered a long acting anesthetic and steroid injection be done at the same time. While the extra fluid in her joints made her pretty sore for a few days, the pain really dropped once the meds absorbed.

leslieann226
07-14-2011, 12:39 PM
Completely in shock yesterday. I went for a second opinion, all ready to plan on my knee replacement, and after being told for 10 months by a different ortho doctor that I need a replacement, I was told by this surgeon that I am NOT ready for a replacement yet. I was completely floored. Why in the world do I have such horrible pain then?? Why can't I do steps and walk up the tiniest of slopes??

THEN he tells me to consider an inflammatory cause. UUGGGHHH!

I am so tired of this pain, I thought a replacement would at LEAST end this particular pain. I haven't slept through the night since last september.

Still waiting for the rheumatologist my PCP referred me to to call me with an appointment time.

On the way home yesterday, I ran into my cousin. She told me her other brother was just diagnosed with lupus (her oldest brother has had it for 10+ years)

Frustrated, confused and waiting

Peridot20_Gem
07-14-2011, 05:01 PM
Hi Leslieann,

That sounds a bit backwards mate saying you need a new hip but you don't need it yet...never heard nothing like it in my life, so in other words it's carry on till the pains unbearable.

It looks like a 3rd opinion is needed, you always gey one saying against another and he wants you to have the inflammatory cause to see if that helps and if it does it holds off them doing a new hip.

Oh i am sorry about the news of your cousin's older brother is he ok or shocked??...it seems like it runs through the family.

I really hope they're coping ok and yourself besides, do takecare mate.

Hugs Terry xxx

steve.b
07-14-2011, 07:56 PM
my wife also went through the doctor problem.

find a second surgeon.
our first one wanted to break her bones and reset them at a different angle.
the second said.......
there worn out, when do you want the operation.