[suesParticipant]

This my first posting on here, just hoping someone can offer some help with my problem. I was diagnosed in July 2013, had 7 cycles of treatment, then had a stem cell transplant in March 2014, I am now on Lenalidomide maintenance treatment and I have been in remission for 2 years with my paraproteins at 1.9 when they started at 25 – that is the good news.

Unfortunately after the transplant I have had problems wearing glasses, I have wore glasses since I was a child with no problems at all, after the transplant I seem to have developed extra sensitivity around my ears, when I take my glasses off I get discomfort around my ears and temples, even though the glasses are not touching my temples that is why I am sure it is around the problem is around the ears, it is not the prescription because when I try glasses on with just glass in it is just the same. In the last 2 years I have spent a fortune on 8 pairs of glasses trying to get it right, as I have cataracts in both eyes and floaters, I need to be able to wear them. At the moment I sit near the television and use a magnifying glass for books and papers rather than wear them which is not a good idea apart from  a waste of money.  No-one seems to know what is causing it, the doctor at the eye hospital just said it could be nerve endings.  All I want is to be able to put glasses on and forget there are there like I used to.

Sorry to ramble on but this is really stressing me out anyone else with similar problems I would love to hear from you.

 

 

[davidainsdaleParticipant]

Hi Sue

Stem Cell Treatment like you in 2014 and fortunate that my quality of life is much improved.

I don’t know if I can offer much help or advice except to say that the vast range of medication we have during treatment ( I was on 40 tablets a day at one stage ) is bound to have some side effects.

I have found that skin irritation and muscle weakness to be a recurring problem but on the positive side the effects do seem to be getting less as time passes and I recover my fitness. I did have eye problems due to fluid retention in the eye ball which I think was caused by the steroids, but this quickly got better once I stopped.

It may be worth having a word with the Myeloma Helpline staff who have probably come across most of the side effects experience by patients over the years.

Hope this helps.
David

[suesParticipant]

Hi David

Thanks for your reply glad things are getting better for you, I might try the helpline, also I am seeing my consultant this week so will bring it up with her. Although I don’t hold out much hope as it is coming up three years since the transplant and cycle of treatment and doesn’t seem to be improving.

All the best

Sue

 

 

 

[Author]

Posts