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AAAHHH INFURIATING

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Rheumatoid Arthritis
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Posted 9/23/2011 2:31 AM (GMT -5)
so i just got back from doctor with a bag full of referal letters you need to go to your Opthomologist to keep check on your eyes,you need to keep up the podiatrist for your feet,(Diabetes) you need to go to Resperitory Specilist ,and Dental clinic for teeth, BUt as for the referal to Hematologist for the LGL in Blood well we will monitor that for a month see how it goes!! thats what i want to get on to Why wait ? sometimes it seems they run around after the little things and the bigger things well wait and see!! i have a Huge Fammily history of Cancer it is The main No- i think Only Killer in my family so of course when i have Reoccurant LGL Leukemia in my Blood im gonnna be a Tad Concerned, what do i do ? i can wait another month and what if it has subsided then in a few months time it comes back like it just has now only then more time has passed then in 3 years i'll have some specilist telling me "oh if only you'd come here sooner?"  i don't want to micro mannage or be borderline hypocondriact but i just don't understand the logic. ?

 

Posted 9/23/2011 8:00 PM (GMT -5)
Hi, Bad Day,

Do you have a good PCP you can talk to about your concerns? I wonder if he/she would give you a referral to a hematologist.

Sorry you are getting such a run around. Doesn't make sense, does it?

(((Hugs)))

Vanessa
Posted 9/23/2011 8:28 PM (GMT -5)
JERKS!!!!!!! How rude they are to make light of your concerns! I don't know how these people can work in a field such as this and not understand!

Be the squeaky wheel. Demand that you are taken care of HERE AND NOW! Tell them how uncomfortable you are waiting with such a family history. Maybe start with...with all due respect I need to find out now and if that doesn't work- DEMAND!

So sorry you have to stress over this- you are in my prayers.
Posted 9/23/2011 10:29 PM (GMT -5)
Thank you i was wondering if i was being overbearing,

 i got home and was feeling very Low and as tho id been brushed off,

so a friend told me about another GP,i think you call them PCP, so i have rung and made appointment unfortunatly not till 10/Oct But i will just have to change Doctors and get one that i can talk to this guy is aparently good so i'll start with - i want to see  a Hematologist.

you know what happened in my visit apart from giving me all the referals for what i felt was more minor issues when i mentioned the increasing night sweats - which i might add is a symptom of Leukemia (yes also other things i know)

all she  asked me was if i had been thru menopause i told her i'd had hysterectomy aprox 20yrs ago and yes they took overies it was like this was the first she'd heard of it and i visit her at least once a fortnight for a few years now and this subject has been spoken of many times

she knows my family history of cancer she knows My history of it Overies removed with huge cycts then Brest lump removed with "dodgy" cells i have mamograms every year so i really felt like this LGL should be jumped on -

- Ha i'm really trying to be the first in my family to die of some exotic death like hit by lightning rather than cancer related  LOL

 i think either she's overwhelmed or something but i really don't want to go to a Doctor that is suposed to be my Advocate and be made feel worse

but oh well i've made the apointment with new GP so all i can do is give it i go

i just now read a few posts via google and main things with LGL Leukemia is Night sweats,Anemia,Fatigue,and even ringing in ears ALL of which i have had this entire year since the first LGL showed in blood - seriously i feel like im locked in a bubble with people on the outside but no one can hear me- all i want to do is Cry

 

Posted 9/24/2011 4:18 PM (GMT -5)
A hematologist is a very good idea. Bad- you're in my prayers for strength, peace of mind and a conclusion for your questions. Also that your fears will be put to rest and it won't be leukemia after all.

Hang in there and keep us posted
Posted 9/28/2011 9:57 AM (GMT -5)
I certainly agree with what WearyRAsufferer said, get the referral to see the
Hematologists, it's a good idea...with all the symptoms your having
this should not be dismissed...and please know we do care about you and
sending you many many prayers and well wishes...
Thinking of you, please keep us posted when possible as we do care about you.
Posted 9/29/2011 5:18 AM (GMT -5)
It is such a common rheumy reaction to wait. I get so sick of waiting and have ranted at this very point before.
How utterly frustrating for you and especially when waiting could be dangerous. I mean we don't know if its serious but surely we don't need to "wait" to find out. Surely its necessary to follow this through with a blood specialist to see if its ok to wait?
Heart is with you but I'd get a referral, it is never wrong to get a second opinion, I'd go for peace of mind. Stress is only going to add to arthritis pain or flares. See your GP and get a new referral or talk to your GP. Sometimes I've found if the GP talks to the rheumy directly you get a better reaction from the rheumy. They don't seem to hear us sometimes.
Good luck, thoughts are with you, golitho
Posted 9/30/2011 9:49 AM (GMT -5)
I feel you BADDAY. Like we can afford to go to a different Dr. for each problem. Then they dont pay attention to meds. fr everyone. I dont get any help with my DDD in neck because I need to go to a different Dr. for it. Therapist said couldnt get copy of MRI to treat it. WHY NOT? Other Drs. got it. I think when they are not sure what to do or cant figure out what is wrong they ship us off to another . I am trying an internist now who specializes in arthritis and thyroid. He is also primary care physician for a friend of mine. The first thing he did was getALLL of my records from past and present DRS.  My rhuemy said I needed a internist to put all together. The first internist I tried was awful bad. But I like this one so far. Hope you can find the right Dr. for you. It makes all the difference in the world. Good luck.
Posted 9/30/2011 11:37 PM (GMT -5)
oh boy yes and in an odd way its good to see others have same problem it helps me not think i'm being a pain to the Drs. it is Actually them !

i have made the dissision to go to a new GP (PCP) it was a hard choice as i have to go thru All my history Again and you do get comfortable with a regual Doctor even if they are not doing all you want its easy to go in and refill prescriptions etc, but i know if i want to get anything moving i need to change and this new guy has been recomended as quite good.

but like everything he has a down side you need to book at least 2 weeks in advance to get in to see him so my appointment is 10th October

i have really litteraly had my head spinning with all the different specilists and each one only dose "there" thing i mean really a back problem you'd think a Rhumy - Joints bones, would be able to help but oh no.

ah well i hope to get to see the Heamotoligist ASAP and then sort out the rest bit by bit

Normal - i have found sometimes internists can be good as they are keen to learn and sometimes look more than a singleminded specilist so good luck there

Posted 10/2/2011 1:29 PM (GMT -5)
Thats what I am hoping. Internist also specialize in certain fields so I am praying this one is good. I have thyroid noduals(spell?) on top of everything else and he specializes in arthritis and thyroid. The right Dr. is the most important thing. I hope I didnt put him off last week because I said I did not want one more test because I couldnt handle anything else being wrong. Keep hoping someone on here will get a Dr. that REALLY HELPS them so they can pass the info. on yeah That is why I think this forum is so important, to share knowledge. Take care all.
Posted 10/2/2011 4:11 PM (GMT -5)
I am so lucky in that my internist has a family member with RA. She knew before my RD what I had and has been so supportive. Even now when she says I am amazing in that I was so severe and enjoying such a beautiful remission. Oh Bad- I wish you can achieve the same my friend!
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