mum had an appointment at hospital today and found that the person who was looking after her had left and that he was a registrar and not a consultant. we was never informed of this. this registrar at said that mums muscle problem was nothing to do with illness and separate issue.
Today another registrar tried to see us. I made it clear in no uncertain terms that I wanted my mum seen to by a consultant. the dr/consultant whose care my mum is suppose to be under then sat in with us with the registrar. He says that muscle problems could be down to CS most likely the steroids she is on. He has requested for MRI (to see what impact if any on nerves) which we will receive an appointment for in the post. blood test also done today. though dose of mums steroid and mmf have been kept same he did suggest that may lower steroid dose.
I also have an appointment with mums gp this Friday to request for a second opinion.
how do you know when condition is under control?? this was going to be my next question but we was rushed and told he has other patients to see - clearly was not too pleased that registrar only had not seen to us. I insisted she be seen by him in the future and not his registrars which he agreed to.
best wishes to all.
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Naz2014
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Good for you Naz. Definitely push for that second opinion, the fact that a Consultant would let a Registrar totally oversee a complex disorder like CSS speaks volumes to me, not in a positive way!
Thank you Keyes. Today had the GP appointment and mum is being referred for a second opinion. I am also lodging a complaint with the present hospital in question.
My sister was diagnosed with CS may 2012. She is still finding the right drug for her to stabilise her condition. They say 18 months to 2 years generally. Unfortunately my sister has been over sensitive to the drugs so this has delayed the process. The idea is to find which drug works for her so that the steroids can be lowered.
Her treatment started with cyclophosphamide, did your mums?
I've not heard of someone not starting their treatment without it.
I really think to find a specialist you can have faith in is crucial because of how rare this condition is.
I'm happy to answer any questions or talk whenever you need!!
My sister was diagnosed with CS may 2012. She is still finding the right drug for her to stabilise her condition. They say 18 months to 2 years generally. Unfortunately my sister has been over sensitive to the drugs so this has delayed the process. The idea is to find which drug works for her so that the steroids can be lowered.
Her treatment started with cyclophosphamide, did your mums?
I've not heard of someone not starting their treatment without it.
I really think to find a specialist you can have faith in is crucial because of how rare this condition is.
I'm happy to answer any questions or talk whenever you need!!
Sorry to hear about your sister and hope she gets on the right track quickly.
Mum's treatment so far has always consisted of Mycophenolate Mofetil and Steroids for the CS. She also takes various other drugs for nerve pain, calcium etc. but the MMF and steroids specific to try and control the CS.
We had a GP appointment today and mum is now being referred for a second opinion.
Best wishes and happy that there is a forum to share our experiences and hopefully shed some light to each other.
I have CSS. I was diagnosed in 2008. Both before (and more so afterwards) I had problems with painful, weak muscles in my arms and legs. One, of the many, doctors I have seen during the past 6 years casually mentioned it was the steroids that had caused it. Not entirely sure about that but hey ho! I'm just the patient! (I wasn't taking steroids before diagnosis). However steroids have probably exacerbated the problem.
The bad news is (bearing in mind this is MY experience only) my muscles have never really recovered and are still debilitatingly very weak. For instance I cannot crouch down for more than a couple of seconds because if I do I have to get down on my hands and knees (this is extremely painful for whatever reason) to get myself back up again. Stupidly, in the early days, I did this in a supermarket and had to haul myself up via the shelving! Embarrassing wasn't the word!
I hope this helps you a bit. Please feel free to ask questions if you need to, I'd be happy to help. However please bear in mind; I tell it like it is and I'll tell you straight how CSS affects ME.
Thank you Andrew. She will be seeing the consultant from now on and GP agreed to refer mum for a second opinion with a specialist at another hospital. Best wishes to you.
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