[pammyd]

I have been suffering for 2 years. I have been diagnosed w/reynauds, interstitial cystitis, possible vasculitits. My joints swell up, I have permament rashes over my nose and cheeks Now I have rashes on the palms of my hands, my joints swell so much sometimes I can't walk. I am in sooooo much pain almost all the time. I can go on forever with symptoms, but my blood work keeps coming back normal.
One doctor looking at my swallen knee, actually said to me that my blood work was not showing up with any swelling, so I had none. I couldn't believe that bloodwork would be more important than his own eyes!!!
I don't know what to do. Every time I am told that everything is "normal", I want to cry, crawl under a rock and disappear.
Any suggestions???

By the way they are still giving me lupus meds, but everything is normal.

Please help.

 

[LolaLola]

Dear Pammy, my bloods were negative for a very long time, yet I was really ill.
I had to see Dr. D'Cruz privately in London at first to get taken seriously. Bloods are not the whole story.

My local Docs, said to me that "whatever it was I should learn to live with it, and think of it like I had been crushed in a car accident, rather than look for an explanation". I had the sense to leave those idiots to it. I know we aren't made of money but sometimes a private appointment with an experienced Lupus Consultant who has time to listen, can be a great start.

I am sure others here will have suggestions too.
In any case, you are not mad just desperate.
x Lola

 

[Maia]

I can certainly understand your feelings - although I was diagnosed with lupus quickly a few years later I had a number of new and worsening and disturbing symptoms & even with a lupus diagnosis I was treated much the same as you have just described. Very frustrating - & being treated that way makes it all about 10 times worse all by itself!

That is nearly preposterous - that doctor saying you can't have swelling after seeing it himself only because bloodwork is normal. I too have never had an abnormal SED rate, and had a fair share of doctors tell me my lupus was not active because that was not elevated (despite terrible worsening symptoms like protein in urine, joint pain, malar rash, fatigue, etc. etc. etc.!). My new rheumatologist says pain=inflammation whether it shows up in bloodwork or not.

There are good doctors out there - but it takes a while sometimes to find them. Surprising John Hopkins wasn't better.... you can ask for recommendations from people here in the Find a Doctor forum.

For you, since you do have rashes, have you seen a dermatologist about them? They can take a look, and given the difficult past few years for you getting a diagnosis and treatment, they may biopsy it and see if you can get a definitive diagnosis for lupus that way. We have more than a few members here who get a diagnosis through skin biopsy. Affected, and unaffected skin (& even unaffected un-exposed skin) can all lead to a lupus diagnosis.

Good luck! Hope you get somewhere soon. Are you on any treatment at all for the illness/pain?

 

[Katharine]

Hi Pammy,

I have just read this post and the other one in answer to someone else's. I'm so sorry you're feeling as you are now and can really understand your frustration.

Like you I felt ill for years and was brushed off by my doctors. I then was lucky enough to go into remission for two years and even ended up convincing myself that I had imagined the whole thing or somehow made myself ill. Then, it all started coming back, only this time it just got worse and worse. I kept going back to my GP who is a good man and who doesn't ignore me and he kept testing ANA and all sorts of other things like lymes, mono etc. Nothing came back positive. According to my bloods I was a perfectly healthy person. Of course the problem was that as a perfectly healthy person I was finding it incrreasingly difficult to work, walk, or move in any way.

I had to keep looking back to who I knew I was. I used to ride 6 or 7 horses a day, I loved walking and am black belt in aikido. So, I don't think I'm a lazy slob but that was kind of the impression some docs gave me. My GP referred me to a rheumy (well actually he said you can go and see a rheumy if you want) and at first she couldn't piece things together at all. She took me seriously enough but she's pretty young and absolutely wanted my bloods to show something more than highish CPK and a slightly raised sed rate.

At first I felt totally abandoned and didn't even go to see her for 6 months. Then as things got even worse, I went back and she said "Oh I haven't seen you for a long time" (she was actually surprised). Anyway, I kept complaining and mentioned dry eyes and mouth. What with that and the photos I had kept of the one time I got a really severe malar rash, she sent me to a dermy to test for sjorgens.

Annoying little being that I am, I also took the photo to the dermy who, although a stand in for the normal dermy and looked like she'd just left school, got all excited about that and decided to test for lupus too. She took a small punch biopsy from an unaffected part of non exposed skin (on my stomach).

In the meantime the rheumy had said that if we didn't get any results back from the latest batch of bloods then she would try treating me as if I had fibro to see if that would help. Of course, I knew I didn't have fibro and so did she.

Then, suddenly one day, I have the rheumy on the phone, almost in a panic, saying don't start any fibro meds you're skin biopsy came back strongly positive for lupus and you must start plaquenil right away.

So, it was a long road but I did get there. Since then all my docs have been wonderful and my rheumy has possibly learnt to be a little less reliant on bloods

My bloods still have never come back ANA positive. My lymphocytes and leucocytes are often out of whack. My vitamin D requires constant extra vitamin boosts to keep it anywhere near normal. I have had very high anticardiolipin antibodies and tend to have very high C3d (whatever that is) and C1q but that's it (I think, me memory not that good for these things)!!

yikes, are you still awake :lol: ?

What I meant to say was. You know your body and you just have to keep going back until you get answers. Maia's idea of getting a referral to a dermy is a good idea.

Katharine

 

[pammyd]

great idea1

Hi there

Thank you guys soooo much.

I had spoken to a lady who also had normal bloods for 6 years while she suffered and finally got diagnosed with Lupus through a skin biopsy of her face, but she had told me that her rash had gotten so bad it looked like blisters, so I thought I had to wait until my rash got that bad. I am going to get on the phone today and call around to a dermatologist and give it a try.

They are medicating me with plaquanil. They also give me hydrxychloroquin for the Reynaud's, which is very bad on me, my whole body turns blue and not only when it is cold. They have said I have a posible underlinining vasculitis. Plus I take another 6 meds because my bladder swells up and it gets very painful. I also take sulfasalazine for arthritis and swallen joints.
That is what confuses me the most. They treat me like I am wrong for wanting to put a name on what is making me suffer. Like I should just go away, but they medicate me with these medications. Unfortunately, they don't seem to be working well. I don't know if there are other treatments out there besides these, but I know that they won't try anything else on me until they have proof that I have Lupus. My pain doctor told me that the only other thing out there is steroids and that I just had to learn to live with the pain. I'm ok with that, but for some crazy reason it is important to me to know what t is that I have, even though I am sure that it is Lupus, I still want a diagnosis. Is that so wrong?

Thanks again for the great advice!

 

[Lily]

Hi Pammy,

I am sorry you are suffering so much with no firm answers.

I was a bit confused by this statement:

They are medicating me with plaquanil. They also give me hydrxychloroquin for the Reynaud's,

Plaquenil is the brand name of hydroxychloroquine. It won't help with Raynauds, but there are other meds which will help it.

Have you ever considered getting another opinion? Sulfasalazine is known for causing a drug induced lupus syndrome in some people. Seeing as they don't seem to know what you have and are covering a lot of angles with meds prescribed, a second opinion might be invaluable to you. I would try and see someone who is a Lupus specialist Rheumatologist to get this sorted out.

Is it your GP handling this for you or have you seen a Rheumatologist already?

Welcome to the site by the way, I hope you gain much knowledge and support here

love
Lily

 

[Raglet]

actually I beg to differ about plaquenil not helping reynauds. I have found that since I have had my blood thinned out by warfarin it has helped my reynauds considerably. Doesn't stop the vasospasm, but the blood seems to get through the narrowed arteries better. I haven't needed any iloprost infusions for my reynauds since I have been on warfarin.

It is therefore possible which plaquenil (which has a milder blood thinning effect) could help reynauds. Who knows, stranger things have happened.

cheers

Raglet

 

[Lily]

I guess that's a possibility Raglet, who knows! maybe mine would be far worse if I wasn't on Plaquenil.

love
Lily

 

[pammyd]

Sice they have put me on the plaquanil my raynaud's has gotten under control, not completely but my color is a lot better. I used to look dead. Now my lips are the only thing that is constantly blue.

The sulfasalazine the rheumy is giving for what he believes I have as Reiter's syndrome because nothing else has worked. That is the last thing he has put me on just recently. It scares me a bit that you said it gives Lupus symptoms because I have had these symptoms for 2 years and they are already alsmot too much to handle, I don't think I could take much more.

The other medication they are giving me is Nifedipine, which I believe is also for Raynaud's. Although I thought that plaquanil was used for Lupus, which is why I said I felt very confused at being treated like a nut when I suggest that there is something really wrong with me, and yet being medicated as if I did have Lupus. I really feel that is one or the other.

Either I am sick, or I am just nuts!

I have not gotten a second opinion, I have gotten at least a dozen.
At first every time I went to the doctor the first time they saw me they would suspect Lupus, but after they tested my blood they would say either they didn't know what was wrong with me to go away, or that there ws nothing wrong with me.
This last rheumy was nice enough to take me seriously, said I had all the markers for Lupus but he couldn't diagnose me yet because of my blood testing normal and at least attempted to treat me, unsuccesfully so far, but at least I feel like someone is trying to help me.

Someone here said they have never tested positive in their blood but that they had a biopsy test positive so I mae a dermatologist appointment for next week. I am going on the 27th and I am going to ask that my rashes be biopsied. I don't care what I have to do in search of a diagnosis. I am suffering and nothing can be worse than this.

Thank you all for your replies it really means the world to me to know that I am not alone.

 

[Lily]

(((((((((((pammy))))))))

Either I am sick, or I am just nuts!

:hugbetter: Sick by the sound of it or the rest of us are nuts too

If you have only recently started on the Salazopyrin and you have had Lupus symptoms prior to that then there's no possible reason to think that it will skew the picture. You may or may not have a reaction to it, not everyone does, so just keep an eye out for worsening problems. I am sure he is aware of it and you can contact him if it seems to be making you worse.

Have you been on the Plaquenil long? It can take quite a long time to work for many of us but it is an excellent drug for Lupus once it does work. He must think you have some kind of Connective Tissue Disease to have started you on that, they are all treated with it. Often in early stages it's hard to work out which CTD you have, thankfully the one drug is a starting treatment for all of the CTD's.

This last rheumy was nice enough to take me seriously, said I had all the markers for Lupus but he couldn't diagnose me yet because of my blood testing normal and at least attempted to treat me, unsuccesfully so far, but at least I feel like someone is trying to help me.

Hold onto him tight pammy! At least he has an open mind on what you might have and is willing to treat without a firm diagnosis. Which is more than we can say about a lot of docs we hear about here.

The Nifedipine is used to treat Raynauds, usually in more severe cases. My Raynauds is quite mild compared to many thankfully.

I just wanted to wish you good luck with the Dermy.

Let us know how you get along,

love
Lily