Arghhh! Follow up rheumy appt

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Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 1/12/2012 9:41 AM (GMT -6)   
Well, so I went back for my follow up appt today for the results of the blood tests and MRI scan of ileoscarel (sp?) joint. I had already had some of the blood tests results given to me by me GP at end of November mainly the ANA and DNA which both came out as positive and so was expecting, maybe irrationally by how badly the first appt went, for him to acknowledge that this is some sort of auto immune connective tissue problem. I had come close to cancelling the appt recently as knew it would be a waste of time me going as in the first appt he spent an hour telling me I could not possibly have Lupus or any other such illness and could not have antiphospholipid syndrome and arthritis (even though I have the letters at home confirming the APLS and arthritis and the arthritis was actually dx at the same hospital I went to for the rheumy!) But I went anyway and he said all tests were negative and nothing on the MRI scan.When I said tht my GP had given me the ANA and DNA results and that they were positive he said they don't mean anything. So I asked him what this joint/nerve pain, exhaustion, brain block and all the other annoying things were then and he said fibro. I reminded him that I only had 4 tender points and they were my neck, where I have 6 discs that were out of line due to injury and back of pelvis where my sciatic pain is. He said that you don't have to score 11 tender points for fibro and that in his opinion that was the most likely cause. So I can have fibro even though I don't have the right symptoms but not anything else and that was the end of the appt, didn't want to see me again for any follow up and no further advice. He also said this was all caused by the Crohn's disease even though that is in remission and has been for many months and having had it for 23 years and numerous complications from it but never anything like this but no he said def the Crohn's which my GI said it wasn't and fibro as well. Oh and this all started after I took Humira for the CD and was only on it for 4 months then I stopped it when pain became so bad couldn't move, but no Humira cannot cause this apparently so he said.
So it went exactly as I knew it would go, basically a waste of time and energy getting there. Luckily I have a great GP who will do whatever it takes to keep me moving and able to work but even so have had to reduce my hours at work as am so exhausted but he said nothing we can do about that, it is down to the Crohn's according to him. I kept telling him I am used to being worn out from the Crohn's but this is something else, I struggle to find words even basic ones, forgot where I was driving to the other day and why I was phoning someone but he said, well you have a lot on your mind. Oddily I have been very relaxed recently since I made decision to reduce hours at work and have been under much more stressful times than this and never had that happen.
So just bit p****d off and have appt to see my GP next week as she wanted to see me after I had seen rheumy guy again to see how things went. Thank God I have her to deal with this but left me feeling like there was absolutely nothing wrong with me and I wasted their time. My GP is more than willing to refer me onto St Thomas' in London as they are the largest research centre for auto immune conditions in Europe but to be honest I don't feel I can be bothered as it is a long way away from where we live. Think I will see what she says next week and have some time to get over this whole fiasco.

Regular Member

Date Joined Sep 2011
Total Posts : 51
   Posted 1/12/2012 12:38 PM (GMT -6)   
Perhaps a second opinion is in order? If you don't have confidence in your rheumy, then you're probably right that it's a waste of time.
I'd try to find a new rheumy before I settled on any treatment or prognosis.
dx: SLE 07/2011, OCD 2006, osteoarthritis 2002
rx: CellCept 2,000mg/day, NSAID for pain, zoloft 200 mg

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 1/12/2012 3:35 PM (GMT -6)   
TBH at the moment just completely fed up with it. My GP put me on gabapentin, oxycodone and amitriptyline and the combo is def working better than the meds I tried before which included fentanyl and butrans patches which them selves worked well but need to take codeine in some form to slow bowel down as have had so much of small bowel removed and all of colon removed due to the Crohn's and if it isn't slowed down have to empty my ileostomy bag all the time and have problems dehydrating really quickly. So think I will see what she says when I see her next Wednesday and report back what happened today. She is more than happy for me to stay on the gabapentin, oxycodone and amitriptyline and so is my GI, if it works for me and allows me to stay working even if it means reducing my hours they are more than happy to keep meds as they are. Think I just need to take some time out as last 15 months have been hell medically and just want some peace and quiet away from doctors who don't know what is happenng but can't be bothered to find out.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, many surgeries for abscessses & strictures. Lupus - caused by Humira. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium
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