Getting the right help

[nicky00]

After seeing a Rhumatologist 3 times, I have been diagnosed with mild Lupus.

To be honest I do not have a lot of confindance in the consultant in general. My friend who knows him (she is a nurse) suggested it was time for him to retire.
Enough said.

My main point in writing is I feel a little lost, like Im back tracking over issues I have perhaps forgotten to raise, misunderstood, or even never got round to asking/thinking about for some reason.

Here goes;-

When would a Rhumie be likely to test to see if its sytemic/organ involved.
I am being treated with Planquenil to get my ESR/inflammation rate down.
So does this mean there is no other need for investigation?.

My leg muscle problems were dismissed by the Rhumie as non Fibromyalgia.
He I think suggested I go back to my doctor about that. Is not the Rhumatologist the person who investigates that?.

If I have concerns / interest re my skin. Do I have to ask my doctor to refer me to a Dermatologist, is this the job of the Rhumatologist?.
I have skin changes I would just like to know about. There is nothing I cant live with etc.

To be honest Im trying to be careful which route I go down as the Rhumatologist I feel is so unapproachable. Im trying hard not to loose my temper with his attitude.

So my last question is. What are the chances of me asking my doctor to refer me to another Rhumatologist without giving myself a reputation as a difficult patient.

I will visit my GP hopefully soon but would like to feel a little more armed and confident about what is considered the right way to approach things.

Thanks
Nicky ( sorry for the ramble)

[helloos]

Hi there !

When would a Rhumie be likely to test to see if its sytemic/organ involved.
I am being treated with Planquenil to get my ESR/inflammation rate down.
So does this mean there is no other need for investigation?.


The rhemo should be doing a urine and blood work to monitor these things. Mine usually does like every 3 months, unless I see changes or suspect something is wrong.

My leg muscle problems were dismissed by the Rhumie as non Fibromyalgia.
He I think suggested I go back to my doctor about that. Is not the Rhumatologist the person who investigates that?.



Are you having weakness or pain in your muscles? I have muscle pain and do not have fibro and it is related to Lupus. Pain meds sometimes I use when really bad. Maybe your gp can help you with this as mine did and I saw a pain clinic as well for it.

If I have concerns / interest re my skin. Do I have to ask my doctor to refer me to a Dermatologist, is this the job of the Rhumatologist?.
I have skin changes I would just like to know about. There is nothing I cant live with etc.

Some rhemos notice the skin change, etc. and will make comments on them. But if you can get a referral with your gp to a dermotologist that would be the best way to go.

If this rhemo has diagnosed you with Lupus and is treating you for the same, then I would stick with him for now seeing you went through two already.

I think if I were you I would make an appointment with gp to look at your skin and refer you to dermo, talk about your leg pain and your options and maybe mention if there are any other rhemos etc. I would just worry about you being undiagnosed by a forth rhemo and while this one is treating you, you may be better off staying with him for a while.

Hope you feel better soon.

[nicky00]

Sound advice,

I went to see my doctor Wednesday and expressed my concerns about muscles and organ involvment.
I forgot however to talk about skin!:rolleyes:

Having asked about the protocol/chance of a referral to another Rhumatologist, I was told its my right and she was reassuring it was no problem to do so. Am being referred to a physio for muscle locking/pain.

As yet I have only seen the same Rhumatologist 3 times, he was away once and his collegue stepped in.

Practically its best to stay with him whilst he is taking me seriously and medicating despite the fact I think he comes with his own set of personality problems:rolleyes: .

Organ involment Im told would mean my bloodwork would scream I have more going on I have been told - I hope that is right.