[Salopsally]

Im frustrated and struggling. Im not desperately ill or totally incapacitated but I still feel Im not getting the best care I should.
Ive got stomach problems maybe its IBS not sure. Had a colonoscopy nearly 4 weeks ago. They said results of biopsies will be sent to me in a week to 10 days.. still nothing.

My GP wrote to my Rheumatologist for advice on certain problems that she isnt knowledgeable enough to deal with.. That must be 6 weeks waiting for a reply.. still nothing....

My joints are flaring.. my fatigue is disabling.. my body aches constantly

Im trying to get Plaquinel.. still no luck

Rheumy was meant to arrange a bone scan about 4 months ago. Nothing
My kids say ive shrunk

My goodness Im a moaner lol.

I know you cant help but it helps me to moan.

Thanks for that.
Cheers Sal xxx

 

[lin]

Orrrrrrrrrrrrr Bless i hope you get sorted but sending you a hug hang in there


(((((((((hug)))))))))) Lin xxxxxxxxx

 

[Joandublin]

Sally :hugbetter:

You are certainly not a moaner. You have spent 10 years being treated for the wrong disease and now when you find out what is really causing the problems you are being let down again by the medical profession.

I would be spitting mad if I were you. You deserve the right treatment and you are simply not getting it right now. Your Rheumy is being totally unprofessional in not replying to your doctor. Is there any mechanism in your hospital where you can make a complaint or highlight the issue with them? We have a patient services department and I would be able to raise something like that with them. Yes, its uncomfortable to make complaints but not half as uncomfortable as living with constant pain and fatigue :hugbetter:

Can you ring the hospital and chase up those biopsy results? I know that I had to do this on a few occasions when they simply forgot to send out results of various tests. Also can you ring the bone scan department and ask where you are on the list? At least you will find out if your Rheumy has actually referred you and if its simply waiting list problems. Four months is too long to wait on a letter. It sounds to me like the referral either didnt happen or it has gotten lost somewhere.

Also I think it is time that you spoke frankly to your GP and asked how long she is prepared to wait on a response. Either she must decide to prescribe the Plaquenil herself or take the matter up directly with the hospital authorities.

Sorry if I sound annoyed. Im not annoyed with you - Im just annoyed with the way you are being treated (or NOT as the case may be).

Much Love
Joan:rose:

 

[Salopsally]

Aww thanks Joan.
You are always so lovely.
I am on the case Monday. Chasing them all up again. Oooo it does wear me out but yes you are right. Keep at it eh.
Im writing a note now to remind me all the things I need to chase up with the doctors.
I was looking back at my previous posts .. now Ive found them lol. It is over a year and a half since I was diagnosed and not really getting much joy am I.
Im on the warpath Monday.
Thanks again.
Luv Sal xx

 

[Joandublin]

You go girl! Let them all know you mean business!

There is nothing like a Monday morning list and a few phone calls to start your week off with a bang. I do the best advocating for myself on a Monday!

Best of luck!

Joan:rose:

 

[LolaLola]

Dear Sal, I always think you have a tough time, having to support yourself is a strain and nobody can deny that you are not being treated properly. Moan as much as you like. The PALS dept. of your Hospital may well be good at chasing things for you.
x Lola

 

[CleoUSA]

PET scan?

Hi Sal,

Have you had a PET scan to look for slow stomach?
I had several scopes (on both ends) over the course of 5 years, looking for what my problem was, and they never could find anything. Had CT scans and HIDA scans as well looking for cancer, stones - all negative.

I kept telling them that my joints hurt ,too, and I was stiff all the time and exhausted but couldn't sleep. They always looked at me like I was crazy and told me the stomach problem was unrelated to joint problems so that must be something else.

Finally this year I had a gastric empty study - where you eat a small meal with dye in it and they put you under a machine and watch how fast the food moves through the system. Mine was MARKEDLY abnormal, and a diagnosis of gastoparesis. Since that condition is often caused by autoimmune disorders, they sent me for ANA test, which was positive and now finally to a rheumy who was able to diagnose connective tissue problem, likely lupus.

Anwyay, since I got the gastroparesis diagnosis, they put me on a diet of smaller meals, softer foods - no dense meats or dense veggies, and it has helped so much with the stomach aches.

All the other rotten problems - joints hurt, body stiff, numbness, headaches, etc. still there, but at least the stomach doesn't hurt so much.

 

[onetay]

Sal,

You should remember that doctors work for you and that the waiting game is no fun. Have you tried to talk to the rhuemy yourself? If you are not happy with the way things are going with you care than maybe it is time to look for someone that will really help you with the problem. You should not have to be in so much pain or discomfort for so long especially since you are seeing 2 doctors for treatment.

I hope you the best in your fight for relief asap.
Tammy

 

[SingleGirl]

Ditto your first post. Minus the doctor drama. Having no insurance is a great excuse to take a time out from their insanity.

Sending big hugs and good wishes that things even out for you soon.

 

[Clare.T]

I want to mention that all UK residents get free at point of delivery health care. This is a wonderful service in many respects, but it does mean very little choice and very long waiting times especially in some areas of the country. The fact that the patient or an insurance company isn't paying the doctor directly means that the business or profit element is absent. Like anywhere else we have superb dedicated doctors and lousy ones who do not care and can get away with doing very little for their salaries. We have too few rheumatologists and fewer that specialise in lupus.
By any standards Sal is not getting a proper standard of medical care and hasn't for years it seems.

The option is private out- of -pocket health care, talking maybe $400 a consultation not to mention travel expenses and trouble (public transport) and very likely, overnight accommodation in London, another $400 at least.

Sal did get the Plaquenil a few days later but has to go to an education session before starting it, which is very odd!
http://www.thelupussite.com/forum/showthread.php?t=72765

Cheers
Clare