I went too see the consultant yesterday who had told me anyone can be cured from fibro if you want it bad enough. Anyway he's now decided I only have fibro & not MCTD so has said I should come off all of the drugs I'm on for that. I asked him why he thinks that two rheumys, a neurologist & opthalmologist are all wrong. He said my ana is only 1:320 with homogenous pattern and my ESR is only 24 surely it's the disease modifying drugs that are causing everything to stabilise. I asked him if he'd contacted the previous drs & he said no. One of the issues with my MCTD was a lesion on my brain which caused issues with my eyesight so I asked him about that he said its just one of those things. He then said he may be wrong in which case he'll restart everything if I get sick again.
This scares the pants out of me as if it goes wrong in my brain, lungs, kidneys or heart the damage may be irreversable & he's not going to be doing any blood test or other monitoring so by the time I recognise the symptoms as not my fibro it could be too late.
So who do I trust? Either the previous 4/5 consultants are all wrong or this one who's supposed to be a rheumy expert is.
All I do know us the extra worry/stress is not good as I'm in agony today & had a rubbish nights sleep
Written by
SuzyB
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I don't like the sound of your consultant at all, but I don't think you are likely to suffer permanent damage by stopping everything and seeing how you settle.
I do think that you should be monitored, tho' - that seems to be the only sensible option.
Maybe you could see your GP and explain to him how you feel. GPs don't always agree with consultants, and I am sure he will understand your anxiety and arrange monitoring. Your other option would be to complain and ask to see a different consultant.
I'm so sorry you have this anxiety - but the best option is always to take action until you are satisfied. Never worry about being a nuisance to your doctor - he is well-paid for his trouble!
I wish I shared your consultant's view that anyone can be cured if they want it badly enough. I very badly want to be cured, but so far no luck - the man is an idiot!
It's true, tho' that working hard at managing the condition usually results in a big improvement in quality of life.
Best of luck with this, and please keep in touch to let us know how you are getting on.
You can ask for a second opinion before making this major change. Try talking to your GP about seeing someone else before you do anything. Coming off all meds for MCTD is a big risk to take when it's not clear that you do not have that.
2 previous drs diagnosed it 5 yrs ago. Part of me doesn't know who to trust anymore I honestly feel like never going to see another dr again and just taking my chances. If anything happens then my family can sue their arses when I'm dead & if I'm fine then that's a bonus & I can live my life with no more dr made confusion
I completely understand where your coming from. I would be nervous myself hearing that. I wouldn't like to think that the drugs are most probably working. I mean that's why they perscribe them in first place . I would want to talk it through again just because I would want some more reasurance before taking steps to come off them . You need to know your going to be safe ..
Hi, please take all good recommendations, my rheumatologist changed my antidepressants and my antipsychotic medication, he told me to stop all the ones I was on and replace to with just one tablet a day, within 2 days I was literally climbing the walls, my husband got my gp out to sort it out, however my doctor was furious he had done this without contacting doctor I was under at my local mental health centre, please double check everything he does with your gp just to be on the safe side
I thought the consultant at our local hospital knew all there was to know about fibro,but I have just found out he told someone that fibro could be cured. Just who are we supposed to turn to? People with other long term conditions seem to get so much help and support why don't we? Most of us would give anything for a cure.
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It's been a sort of window day
Do we ever really accept ?
The on going Saga of my Rude Rheumatologist Consultant!!
OMG starting to feel some what normal again :)
