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No diagnosis

This topic has 5 replies, 4 voices, and was last updated 5 years, 2 months ago by gailb.

Viewing 6 posts - 1 through 6 (of 6 total)

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December 14, 2018 at 7:31 pm #44716
gailb
Participant
My husband has been trying to get a definite diagnosis for a year and a half. All blood levels low (pancytopenia) with platelets at 32. We have had two BMB and seen every specialist there is. On the hunt for autoimmune, have done IVIG, Rituxamab, steroids etc etc to no avail. Finally second BMB, diagnosed MDS but no chromosomal change yet. We are at watch and wait. Suddenly pain has developed his whole body…mostly knees, hands, shoulders with terrible fatigue. He has gone from biking an hour a day and running marathons to being totally disabled. Has anyone else experienced this much pain with a watch and wait situation? Also, having CT after Christmas for shadow in right lung and possible lung biopsy and doing bone scan next week for the pain looking for anything I guess. Blood levels stay stable but very low..anyone? Does MDs cause pain? Also he is 75 yrs old….no transplant possible.
- This topic was modified 5 years, 4 months ago by gailb.
December 15, 2018 at 7:05 pm #44719

Nancee Noble
Participant

I have a lot of pain in my legs since being diagnosed with MDS. However, no one says it is from MDS. I feel it is. Everyone treats it as if it is neuropathy and it is not the same. My pain mostly when I lay down. Please post any new info you get. Thanks for “listening”

December 17, 2018 at 10:06 am #44725

Allan Romriell
Participant

Gail,
I have had more pain since my diagnosis in june of last year, mostly in my legs and joints although not debilitating as your husbands is but I hurt most of the time. I feel it is from the MDS but I never see that as one of the symptoms listed but many people on this message board say the same thing, they have pain in legs, back etc. I hope he can find some relief. All the best to you both.

December 17, 2018 at 2:42 pm #44729
gailb
Participant
Thank you for your reply. It is validating! The doctors all seem to ignore that symptom even though we stress how debilitating it has become…..no one has even asked if he wanted anything for pain. He doesn’t like pain meds but that being said one of the doctors should have asked him! I am so glad you all are out there listening…..thank you.
- This reply was modified 5 years, 4 months ago by gailb.
- This reply was modified 5 years, 4 months ago by gailb.
February 18, 2019 at 9:00 pm #45120

Mairi Cooper
Participant

My father was diagnosed in 2012 with MDS. Within 6 months of diagnosis, he was complaining about severe joint pain. He has always been a stoic and this was the first time that I heard him complain of pain. He has been on Vidaza since December 2012 but his doctor also put him on a low dose of prednisone for the pain It really helped. While we are now dealing with a decline in his numbers, for years the prednisone kept the pain at bay and (I believe) helped him to fight the MDS.

February 19, 2019 at 2:46 pm #45129

gailb
Participant

I totally agree…..let’s at least address the pain and try and make his life a little easier, better, hopeful whatever. We finally got the MDs diagnosis and our rheumatologist is trying him on prednisone. My sons both just sent him hemp cream that is suppose to help with pain…we are in California so it is legal….anyway I appreciate your validation since the drs still want us to,believe he has developed osteoarthritis overnight!
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