[jbsmith85]

Hey,
I have recently been to the Rheumatologist for a diagnosis of Lupus. I have had nearly all the symptoms for about a year (noticably). My Rheumy said that she was 99% sure I had Lupus before she even ran the blood tests. Then she ran all the blood tests and they all came back fine. However, I just had my spleen removed due to very low platelets (which lupus can cause) and my Hemotologist said hey thought it might be Lupus as well. But since all of my blood work came back ok, My Rheumatologist said she cannot treat me because there is no proof of Lupus even though she still thinks I have it! I cried in the doctors office because of how miserable I feel. I am almost in tears now because I feel horrible. I can't live like this. The extreme fatigue and pain and everything is doing me in.

Does anyone have any suggestions of how I can get some help for this?!
Thanks

 

[Katharine]

Hello JB

I am so sorry to hear how rough things are for you now. I would be extremely angry if my doctor was saying such a thing. I have never had postitive ANA but do have a lupus diagnosis (from a skin biopsy).
A lupus diagnosis can also be given by an experienced rheumatologist on clinical symptoms alone. It is rare as most people have positive ANA but it does happen. Some rheumatologists may not give an actual diagnosis of lupus (which is an advantage for insurance purposes etc.) but will diagnose UTCD and still treat the patient as they would be treated for lupus - It is the treatment that is the importnant thing. Some rheumatologists will also try a treatment to see if it works...

Lupus is a very complex disease to diagnose and it isn't always easy for doctors to come to a firm diagnosis. It is also not lightly diagnosed but I still feel you should be treated for the symptoms if you do have so many of them.

If you take a look at alternative criteria here
http://www.thelupussite.com/forum/showthread.php?t=63963
it should confirm whether you have other the other lupus symptoms.

Katharine

 

[Maia]

If you have any rashes, take pictures of them. Then ask to see a dermatologist about a skin biopsy as we have had several members diagnosed that way when blood tests failed to show anything. Sometimes it takes years for bloods to turn positive.

Do you know what things have been definitively excluded as causing your symptoms? If you live in or near an area with lots of Lyme or other tick borne illnesses then you may want to ensure that avenue has been thoroughly investigated as well. (I had Lyme after lupus and quite honestly the experience was very similar).

Otherwise, I agree it would be in your best interest to ask if you can start some basic treatment to see if it helps "whatever" it is you have. Some doctors will do a 1-2 week trial of prednisone to see if it improves the symptoms if they aren't sure the problem is autoimmune - if the prednison helps then they may start you on Plaqeunil or continue the prednisone at a lower dose until another medication can take effect.

A dx of UCTD can and is often given to people with symptoms like yours (which do sound severe given you had to have you spleen removed). Treatment for it is essentially the same as that for lupus. I would ask your doctor about trying some treatment, and worrying about the dx later.

 

[jbsmith85]

Thank you guys for your reply. I have an appointment with a dermatalogist but its not until June . I have the "butterfly rash" and another rash on my neck and chest and back. My family doctor is treating me like I'm not serious about my symptoms or something. I was the one that had to bring up a possible lupus diagnosis to her and she then sent me to the Rheumatologist. I just don't understand why my Rheumatologist is 99.9% sure I have Lupus and because my blood work was ok, she can't treat me for anything and I have to feel like this all day. It is two months until my wedding and I don't want to feel fatigued and in pain on my wedding day. But that looks like the path I am on since my family doctor won't do anything and I'm at a stop. I was on prednisone 60mg a day for about 9 months due to my low platelet count and i will NEVER go on that stuff again, that made everything worse except it helped with fatigue...but then I COULDNT sleep and I gained 40lbs in a month. My arthritis was WORSE after prednisone. Yeah, never again.

 

[Katharine]

Hi again,

It's good that you have a dermy appointment. Make sure that you also take those photos in case your rashes suddenly disappear on the day of the appointment!!

Even if you start treatment now, anything other than prednisolone is going to take at least those two months before the wedding to work but please don't worry. I was very ill last year when I got married but I can assure you the adrenaline will carry you through the actual day I must admit though that both hubby and I spent the three following days basically doing nothing other than lazing around at our hotel and sleeping :lol:

It's a pity the pred didn't help you. You were on a very high dose which is probably why you got so jittery and gained weight so fast. All in all, pred is best avoided if possible but for some people it just isn't. I have to take between 12.5 and 15 mg a day but I'm fine at that dose and sleep far better with it than without. It's an individual thing and a question of taking time to find the right meds for each person. As I said before there are plenty of treatment options. It sounds like you really need to try and get a biopsy done which might be able to confirm a diagnosis for you.

Katharine

 

[LolaLola]

I am assuming you are in the UK. If all else fails for you please consider going to London either privately at first or NHS to see Dr. D'Cruz, he will not be distracted by blood test results.
Good Luck.
x Lola

 

[SoCalEric]

First, welcome to the forums!
Sorry to hear of your troubles. A Lupus diagnosis can take years. I had numerous troubles for years. I had a case of ITP (is that what your were diagnosed with for your spleen?) years before my diagnosis. For ITP I was put on 100mg of prednisone and that did get my spleen to "let go" of all my platlets. That problem has never returned..and I still got my spleen. A couple of years later other troubles started poping up, too numerous to list here. I was told I was "going though a bad phase" and basically being treated as a hypochondriac. Then blood and protien started showing up in my urine and things REALLY got fun! Got diagnosed (Lupus Nephritis) and started chemo very soon afterwards.
I'm a little surprised by your problem with Prednisone. It's probably THE most common drug for Lupies, we all have a love/hate relationship with it. It's always helped with my joint pains (NEVER made things worse). 60mg is a pretty high dose and 9 months is a LONG time to be on that high a dose so I can understand your feelings on the stuff. Yup, it'll keep you awake, makes ya hungry (hence you gain weight), puffs up your face. But I can't imagine not having it. If you do have Lupus you may have to learn to live with Pred. As Katharine kinda said, most other Lupus meds take awhile to kick in, and I doubt any Doc. would give them to you without a diagnosis. Other than chemo (drug was Cytoxan) I've never been on any of the other common Lupus meds, other than Pred. Even so, there is no "magic pill" that can make us feel better, most the meds just try to control things.

Best Wishes to you...and have a great wedding!
Eric

 

[jbsmith85]

To SoCalEric:
Yes, I was diagnosed with ITP as well, but the prednisone did not help the platelets and thus I got my spleen removed. My platelets jump up and down now. One week they are at 245, the next they are 90. The lowest they got was 40 that was pre-spleen removal. But yes, I was on a high dose for far too long. My face was horrid. I had acne, face hair (not very lady like, haha) It was a mess. But, I just feel so horrible though. I have severe pain in my joints, my back. I have severe migranes (which I have had since I was 4 years old..I even had a cat scan for them when I was 6 and they found nothing). My fatigue...oh my god. I hate it! I just want some help and yes, you are right...they are treating me as a hypocondriact as well and it is so frustrating!!!

To LolaLola:
I'm from the US, I still have yet to make a profile

 

[elisabethm]

:welcome: Hi JB how well do you know your doctor have you seen her lot.As i got a positive lupus result 2years ago when i saw my own doctor after i had seen the rhumy and he said that i probabily had it all my life as a lot of things tied in then i went to see another rhumy in feb of this year and he said not sure if it is lupus.Got a letter this morning to go for more blood tests but i have to see my own doctor tomorow and i will see what he says.I would go with what he thinks as i have been going to the same practice for years and the rhumy spent about 10min with me so if you have seen your own doctor for a long time would you trust what she says i know that the rhumy has the last say on it but i will wait and see what happens tomorow Elisabeth

 

[Maia]

Seeing where you live, could you get a referral to the Cleveland Clinic and let them try to figure it out? They have a good reputation at least

I would think that having to have the spleen removed/ITP the doctors would NOT be treating you like a hypochondriac. It is very VERY frustrating to not have your symptoms being taken seriously. I think we have all been there at some point too - quite unfortunately.

Since you talked about migraines - you may want to look over your paperwork and see if anti-cardiolipin or lupus anticoagulant was tested for - they are often missed in a lupus workup but also often are a contributing cause in bad headaches/migraines. Treatment involves blood thinners and helps many people.

It is very interesting that you had worse joint pain on prednisone instead of improving it. That's more common with something like Lyme - as prednisone is about the last thing you want to be on when infected with it!

I'm sure you'll have a great wedding day no matter what - congrats in advance.

 

[jbsmith85]

Seeing where you live, could you get a referral to the Cleveland Clinic and let them try to figure it out? They have a good reputation at least

I would think that having to have the spleen removed/ITP the doctors would NOT be treating you like a hypochondriac. It is very VERY frustrating to not have your symptoms being taken seriously. I think we have all been there at some point too - quite unfortunately.

Since you talked about migraines - you may want to look over your paperwork and see if anti-cardiolipin or lupus anticoagulant was tested for - they are often missed in a lupus workup but also often are a contributing cause in bad headaches/migraines.

Treatment involves blood thinners and helps many people.

It is very interesting that you had worse joint pain on prednisone instead of improving it. That's more common with something like Lyme - as prednisone is about the last thing you want to be on when infected with it!

I'm sure you'll have a great wedding day no matter what - congrats in advance.

Thanks, you all are very helpful and supportive. At least I know I am not alone in feeling this way. I can't take blood thinners as my platelets are still up and down. :sad: But the predisnone, yah...it made me hands cramp up and the arthritis worse and my legs would cramp up in the middle of the night and it was horrible.

Do y'all think it is worth going and seeing another Rhuematalogist? Or getting a new family doctor? My family doctor acts as though I am a hypocondriact and acts like I'm an annoyance if I keep her in the exam room for longer than 5 minutes :worried: I think because she thinks I'm so young that I couldn't have all these symptoms but I do! I just hate it because even though I don't physically look sick...I feel like i'm dying on the inside!

 

[LolaLola]

Dear Beth,
Well at least the US girls can help you find somewhere to go.
I would never have ben diagnosed without Dr. D' Cruz in London. My bloods were fine for many years before they became positive.
I have been ill 25 years.

I hope you can feel better for your wedding.
x Lola

 

[jbsmith85]

Do you guys think I should see another Rheumatologist?

 

[Lily]

Hi Beth,

I really don't think it can hurt to get another opinion, many of us have. I would make sure you see someone who deals with a lot of Lupus patients though if possible. Not all Rheumatologists are Lupus specialists. I'm hoping that the Dermatologist might be able to shed some light on your rashes too, some here have been diagnosed by biopsy even when nothing is showing in bloods. Do take pictures of when your rash is at it's worst, to show both the Dermy and the Rheumy. Often we are having a more reasonable day when we see them and they don't get to witness all our symptoms.

For a good doc near you you might try posting in our Find a Doctor Forum, someone may know of a good Lupus specialist.

Good luck and hang in there, it's very difficult this being in limbo, we have all been there at one stage or another.

love
Lily