Rheumy appt 7th October

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Date Joined Feb 2011
Total Posts : 1059
   Posted 10/4/2011 4:08 PM (GMT -6)   
After months of joint and muscle pain, fatigue, hair loss and itching, purpura, flushed cheeks (all this started after I began Humira for a crohn's flare) I have an appt with a rheumy on Friday. Really impressed as only discussed it with my GP last Friday and she sent fax asking for urgent referral and they called me today to say come in this Friday, thought the waiting list would be at least 3 months and so was prepared to pay private to see this guy. Researched him online and he is a professor and has special interest in auto immune as my GI and GP both agree that whatever this is (Lupus/CTD) being favourites, it is due to my immune system not really liking me too much - what with the Crohn's, arthritis, asthma, antiphospholipid syndrome. To be honest just glad something is happening as struggling to deal with pain and fatigue and hard to explain to people what is going on without a dx.

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Date Joined Jun 2008
Total Posts : 1470
   Posted 10/4/2011 5:46 PM (GMT -6)   
Hey! glad you got an appointment and its almost here :D! Let us know how your appointment goes. I hope this is the rhuemy that will help get things under control for you.
Lupus Moderater
Cytoxan, Orencia, Septra, Prednisone, carvedilol, heparin, Eliphos, toresmide, sodium bicarbonate, Vit D 50000 IU weekly
PRN: Ativan, zofran, hydrocodone, Ambien or Ambien CR, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

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Date Joined Feb 2011
Total Posts : 1059
   Posted 10/7/2011 3:00 PM (GMT -6)   
Well, had my appt today - not with the prof but one of his minions and not sure why I bothered to be honest. He took all my medical history and was in there 90 mins in total. Asked when these latest symptoms had started and explained everything about the Crohn's and Humira and then pain, fatigue, hair loss etc I had since coming off the pred in May. I don't have any swelling over my joints but never have done even though I have Crohn's arthritis. Tested me for fibromyalgia and was clear for that, only areas that are tender are on my shoulders from previous neck injury and back of pelvis so he wants MRI to check for inflammation there as I have sciatic pain.
This is the bit that got me.... I won't see him again for results of MRI or blood test until January (MRI to be arranged and will prob be 8 weeks or so) but blood tests should be back after a month but cannot phone up for them - you have to be seen by someone. He questioned whether I had really had antiphospholipid syndrome or.....had I just imagined it. I should have taken along my babies post mortem paperwork that has it on there as the main contributing factor to the stillbirth. I asked him if blood tests come back negative for the ANA and he said then def not Lupus or any sort of CTD. He said you cannot have Lupus or CTD without a positive blood test.
Anyway when he said it would be 3 months til I find anything out I broke down and cried my eyes out, not like me as really strong person who doesn't get upset like that in front of people. I said so what the hell do I do for next 3 months, I'm in agony, exhausted and can't do my job properly....he came close to shrugging.
So I dashed back home and rushed up my doctors, needed to get some other pain relief sorted as only signed off this week. Luckily I got there just at end of morning surgery and same doc I saw last Friday saw me. Told her what had happened and got really upset again. I don't really care what this is whether it is Lupus, nerve damage or whatever just need to know so can deal with it, get medication right and move on. So she has changed all my pain meds around and have now started oxycodone and gabapentin along with the amitriptalyne at night as the nerve blockers seem to work well and she signed me off for 2 weeks as it will take week or so for body to get used to them. Oh and she said I look like hell! Always nice when a gp tells you that. Not.
So no answers and not sure I will get any as unfortunately my body doesn't respond to how they say it should in the medical books and had this before where they say it def isn't something as blood test normal but then turns out it is. Sorry to rant on but his attitude upset me, basically tough - get on with it as he not interested in how I cope or not cope day to day and blood tests are all regardless of anything else.
And breathe......

Regular Member

Date Joined Sep 2011
Total Posts : 79
   Posted 10/7/2011 5:29 PM (GMT -6)   
OMGoodness, I had my appointment today with my rheumatologist and it was totally a BUST!. I have cried so much I am now physically ill in a whole need way LOL. I was so hopeful today but when I told him I had lost over half of my hair and within a month at the rate it is falling out I would be bald. He said "well if it makes you feel better when I walked in I thought your hair looked pretty!" Oh yeah and he said he "knows how I feel because he is losing his too" If I were allowed to swear on this forum or if it was appropriate this paragraph would be going a whole different way! He did menton fibrymyalgia to me, he didnt seem to be able to explain my ana titers being so high. I do suffer very badly from malnutrition since this stomach surgery, severe anemia and malabsorption of food, medication and vitamins and things like that. He did boat loads of new blood work and said he would see me in three weeks. So I will be three weeks closer to being completely bald but At least he can relate.....right???? Geesh it made ne feel so much better that he A MAN could understand how I A WOMAN felt about losing all of her hair. I feel like crap, I am so tired I can barely breathe, I am so upset and discouraged I don't care if I breathe, I just wanted some answers! Someone to say this is what I think it is and this is what will make you feel better. Instead he is wanting me to take some heavy vitamins and wait to see him! Oh boy.....I can hardly wait!

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 10/8/2011 8:39 AM (GMT -6)   
I'm so glad your appt went well. Yesterday I was really upset, I hate seeing new medical professionals as they never seem to understand that my body nevers resonds how it says it should do in their medical text books and so just roll their eyes at me, makes me feel like I'm just making it up for the sheer hell of it. I would love to be normal and never visit a doctor or hospital again in my life - have spent far too much time in them.

So today am on slow anger burn and when I go back in January will fire all guns at him if he tries to say or behave like he did yesterday. I have had two huge bowel abscesses 9 years apart and even though I knew there was major problem nothing showed up on any blood work, on inflammation or anything until they had burst and caused sceptacemia and peritonitis and still even then my inflammation level was only very slightly raised. I had IVF and all my hormone panel was completely normal and was a perfect candicate and still the IVF drugs didn't work even on maximum dose and they have no idea why, said they never seen it before. So I know for some reason my body doesn't show stuff like other people do in blood work. Even when the Crohn's was rampaging last autumn in my worst flare ever my inflammation blood work was in normal range even though MRI and scans showed huge areas of inflammation. No one seems to know why but this then causes a problem when I see new doctors or consultants. I know my immune system doesn't like my body - not sure what I did to upset it, every illness I have had or ever had was immune system based but no idea why it is so messed up.

Well new medication is knocking me out a bit but no major relief yet but am hopeful this will work so can get back to work. Like I said don't care what this is just want someone other than my gp to actually help sort it. Now going to wield a duster in anger, not really up to it but have to burn the anger off somehow. lol
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, azathioprine, codeine, immodium, simethicone.
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