[pottydotty]

Hi all, well a quick summary, was dx with lupus six years ago after have symtoms since my teens now in my 50s, was dx on med history as all bloods showed was pos RF, high crp, and leaking protein and blood in water.
About six months after dx I had the pleasure of a new rhumy who hated the world and un-dx me, about a year ago I found a great new g.p. who sent me back as I was so much worse, guess which doc I had still decided I could not pick and choose so stayed with it. On the first appointment with her she dx fibromyalgia without the tender point test, but said see would do more tests, so that was fine they were still looking into it, on my last appointment with her see said I did not have RA or lupus but would treat my symtoms by writing to the doctor for him to prescribe pred and hydroclosyquinine please excuse spellings the same drugs she had taken me off years before to go with the amitripaline that she had already supplied, also during this time saw the kidney specialist who supplied high blood pressure tablets and signed me off as she said I was leaking protein because I smoked. My g.p. is going up the wall with them as I am not due now to see the rhumy untill december and he says that smoking has nothing to do with it as in his opinion I have some sort of auto immune thing going on as I have all the symtoms including a molar rash on my face, beginning to think that I will never get a proper dx untill I can afford to go private, which I am considering.

 

[pennylp]

Hi there,

Wow you must be so angry...and frustrated... I am sorry you are going through all this...
If I were you I would go private, that way you would have peace of mind knowing you are going to a doctor that is listening to you and your GP...
The one good thing is that she is giving you plaquenil and pred... This should help you at least until you get to see someone you have respect for...
There are so many people here on the boards who are going through the same thing as you... I am sure you will get lots of responses.... I am sending you a big:grhug: Take care.

Love Penny

 

[Lily]

Hi Dotty,

This sounds very unsatisfactory I'm mad on your behalf after what you have been through for so long.

On the positive side, it's good that you have started on Plaquenil and that your GP is just as annoyed as you are about this situation. However it's clear that you need much better care than what you are currently getting.

I remember you asked about other docs in your area and had a few replies:

http://www.thelupussite.com/forum/showthread.php?t=67337

Seeing as how your GP is not pleased about your treatment either then it should not be too hard to get a referral to one of those specialists the other ladies see? That's where I would start and it would be easier to get the care you need closer to home.

If that wasn't possible then you could try the Louise Coote Lupus Centre at St. Thomas's London which I know is much further for you.

Good luck and hang in there, we are right behind you, so many of us having had the runaround that you are currently getting.

love
Lily

 

[cad]

Hi,
I am really sorry for your frustrating nightmare!!
I totally empathise with you.
I would say that you have the right to ask for a second opinion and it seems as though your gp will be supportive of this.
And hopefully if you do this the next doc will be on his toes and be ulta thorough, which is what they all should be anyway.
I would definately if you get any better care by having a second opinion cosider having a private consultation to establish a diagnosis form a specialist. Then hopefully no other rheumy will be able to argue with that!!
Hope things start to improve for you.

Good Luck

Cassie

 

[LolaLola]

Hello, Hope I am not interfering but did you realise that Dr. Chris Edwards, ho works at London Lupus and is Prof. Hughes Son in Law also works both NHS and Private in Southampton. He is very nice. May be an option for you.
x Lola

PS I am waving at you across the Solent.

 

[pottydotty]

hi all, lola waving back to you, yes my g.p. is considering refering me to southampton.
The saga continues my g.p. had a letter from the rhumy but missed out the pred for him to prescribe, so I called the hospital they called back and said no pred at this time as they are waiting for the results from a ultrasound that I am having next week on my wrist as I have another lump come up, just had a lympona taken out of my neck and had one removed from my breast some years ago but she thinks that this is not a lympona and said if it was inflammation they would give me an injection of steroids but doubts if they will supply pred, you are all more experienced than me does this sound right?, my g.p. is also waiting for the results of the ultra sound before he will refer me to southampton. so I have to start on the plaquenil after the scan will it do any good without the predislone, many thanks for all the help you give us on this site.
p.s. asked if I could have a biopsy on my molar rash she said no as it may leave a scar, do they realise how many internal scars are there from 30 years looking for answer, plus at 52 I think that my catwalk and modeling days are over.

 

[Lily]

Hi Dotty,

I can see why they want to work out exactly what is from what before they give you Prednisone. It can help a lot of conditions but at the same time it can also skew blood test results and then it's difficult to work out what the heck is going on

I didnt realise you have suffered with Lymphoma ((((((Dotty))))))) that throws a whole different light on the subject and will make diagnosis of some kind of connective tissue disease more difficult to arrive at. Some symptoms of lupus can mimic lymphoma and vice versa. Likewise I am sure some blood results too. Add to that Lymphoma being reknowned for rearing its ugly head years after the initial diagnosis and it makes it all very tricky.

Have they discussed NSAIDS with you, that may at least help some of your pain and swelling - assuming you can take them that is..........or are they worried because of your previous clotting history?

If possible I would use this time to gather lots of information before you see your new specialist. Some of the most important pieces of information is EXACTLY which blood tests were run by this recent Rheumy, I would get copies.

It would be interesting to see if she ran Anti-Ro SSA & SSB for instance. Given your age and some of your symptoms and also the fact you have Lymphoma I would hope that she has considered the possibility of Sjogren's.

Sjogren's is another autoimmune connective tissue disease and does not always present with a positive ANA. Trouble is that an ill informed Rheumy will not consider that diagnosis with a negative ANA and fail to run other tests. Some of those tests are bloods and some are best done by an Opthamologist. In hard to diagnose cases they do a salivary gland biopsy.

Did you have Radiation treatment for your Lymphoma? If so then that can skew the picture even more if it was around your face/neck area. Radiation can cause some symptoms that could also mimic a connective tissue disease. Specifically a dry mouth etc.

Good luck with your latest tests and do let us know how things develop with your investigations.

love
Lily

 

[LBH]

Wow Dotty! You are having a time

I too got undiagnosed by a doctor and have been having the same problems until I went back into another flare and the doctor saw lupus all over my face and neck. I cannot understand how one doctor can say yes you have Lupus and start treating you and then another one come along and take that diagnoses away. I had to defend myself with that last doctor and refused to listen to him in regards to my lupus. I found another Rheumy and they are now treating me for Lupus. So I hope you start getting treated for it soon. Since you are leaking protein I would strongly advise seeing a nephrologist and get that rechecked. Lupus can cause kidney damage! Hope you feel better soon!

 

[pottydotty]

sorry all made a boo boo, ment to say lipoma not lympoma they are fatty tissue lumps that come up and sometimes have to be cut away, I was going through different sites on the computer and came across an autoimmune problem called DERCUM’S DISEASE OR MORBUS (Mb) DERCUM, it is very rare but most have lots of lipomas and they are painfull where as mine are only uncomfortable but many of the symtoms are similar to lupus, sorry again for the mistake my heads in a cloud most of the time lately.