Interesting encounter

[moo]

style_emoticons/<#EMO_DIR#>/wavey.gif Hello everyone,

well its been some time since I have been here as my Rhumey dismissed my symptoms as nothing more then a back problem.....
Last saturday night I went out with a friend that I havnt seen for years, she was diagnosed about 2 years ago with lupus. She was the one that raised the subject of micariage as that is how they found her lupus.(I have suffered 6)
We then got to talking about her symptoms,
I asked if she had anti iphospholiid antibodies and she had never heard of them.
I asked if she had a rash like mine (showed her my decolage and neck)she didnt nor a butterfly rash.
I asked her how her fatigue was, not bad she said.
We shared some sympyoms such as hair loss, joint pain and her pain was in exactly the same place as mine, the pregnancy loss was another symptom that has played a huge part in both our lifes.

I guess I just feel so frustrated that the rhumey I saw wont look further then back ache. I had tests done but nothing showed except the anti phosphollid, I am thankful my friend had a prompt diagnosis and wonder myself, would it make any difference if I had one anyway.

Sorry to vent but still frustrated
Amanda aka Moo
style_emoticons/<#EMO_DIR#>/aww.gif style_emoticons/<#EMO_DIR#>/afraid.gif

[bugsy]

<span style="color:#CC33CC"><span style="font-size:11pt;line-height:100%">Hiya Amanda (moo) style_emoticons/<#EMO_DIR#>/wavey.gif

Firstly i am sorry to hear that you are having so many problems and your rheumy isn't listening to you - i think you should get a second opinion from another rheumy. You mentioned that you were diagnosed with APS i hope they have got you on medication for that.

As for what difference it would make if you had a dx - firstly you would get treated with the correct meds and that would hopefully help to make you feel better and if it is lupus - slow down the process of the disease. Secondly if it is lupus then you need to keep having regular check ups to make sure that no other problems are occuring and also that your organs are alright.

I hope you manage to sort something out - good luck style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/clover.gif

Take care XxX Jo XxX style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif </span></span>

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Moo, I feel that one of the most important things we can have
is peace of mind. And, if in the back of your mind, you feel like you have
not gotten the proper or the correct diagnosis, then I would say deffinately,
go to a different Rheumy and get a second opinion. That should set your
mind at ease. You have to have confidence with your dr. or you are
always going to be uneasy. If you feel like your health problems were not
addressed and taken seriously, yes, go to another dr.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[kaesara]

Hi Moo,
I certainly understand your frustration. We know our bodies and we know when something is wrong. I find it really upsetting that the Rheumie dismissed your problem as a back problem.
How is he treating the APS? Has the Rheumie mentioned doing any additonal test or repeating the ones that you had? My concern is that often times and it isnt right Doctors will do an ANA and if that isnt positive then they just say no isnt Lupus when it is a fact that sometimes person will be positive and other times negative.

In my opinion you need another opinion . I can attest to how important it is to have a Doctor that is listening to your concerns and addressing them. I was Diagnosed with SLE and Fibro back in 1995. I saw a Rheumie for two years and had to change because he no longer accepted Insurance up front and expected payment at the time of visit. I was missing a huge amt of work and couldnt afford to pay that. So... I found an Internal Med Doctor who had come to the town where I live. He had in his ad in the paper and the phone book that he had a special interest in Rheumatology...which turned out to be very misleading. Being interested and knowing what he was doing were two totally different things. So, In the past three months I have found a Rheumie that is really on top of things. He has learned more about me and the status of the SLE and Fibro in these three months than the Internal Med Doc or first Rheumie have since 1995.

I know it is frustrating to go from Doc to Doc and we never really know what to expect. Please do make another appt to see a Rheumie, make a list of your symptoms prior to your appt and any questions that you have for the Doctor. I find this is helpful.

I wish you the best Moo and please do keep us posted on how you are feeling and the outcome of your visit.

Hugs,
Kaesara style_emoticons/<#EMO_DIR#>/hugbetter.gif