HELP!! I have MDS 5Q- and left side pain anyone else?????

[5Q-spray]

Does anyone else have pain in the upper left side? I have had CT, MRI, upper and lower GI, Bone scans, ultrasounds, xrays and no one can fiqure out the cause. I have a mildly enlarged spleen, BUT doctor and surgeon doesn't feel thats the problem. I would LOVE to hear from ANYONE that might could help! The doctors next step is to send me to a rheumatologist. I am living on pain medicine and having a very hard time not being able to do things that I once could--go to work then straight home and do nothing! Thats not a life. Any help and advise will be appreciated!!!!

[Zoe's Life]

I have 5q- and I have been having upper right quadrant pain. I thought it was a kidney stone. There is a very small stone lodged in my right kidney, but they say that isn't the problem. I had a CT Scan, revealed nothing that might cause pain, though they found a nodule in my right lower lung. I go for a repeat scan next month. My pain comes and goes, has been extreme, but mostly a dull ache that is not constant so I haven't needed pain pills or anything. At this point, unless it becomes more severe, I am ignoring it. I am beginning to think it is just part of aging for me. Let us know what you find out.

Zoe

[LynnI]

Yes, my problems with my spleen started during my first tx Nov 2007. It was very painful and it also burned, the doctor at that time dismissed it saying it was probably a mild allergic reaction to the tx. It has never gone away since then, at best I am uncomfortable and aware of it (if that makes sense). It is always the worst during and after a tx, but I haven't had a tx since July of 2008 and it continues to be a problem. Some days it is very painful and I don't want to do much or can't do much. It is also common for it to cause me to lose a lot of sleep.
My MDS doc palps it everytime I see him and when he does it is very painful and tender. I have had a couple of CT's, they say it is mildly enlarged.

I have MDS/MPD RCMD with Fibrosis, I do know that the MPD causes a lot of spleen problems/enlargements, but it seems that many people with MDS have have it too.

It is my understanding that the Spleen and the Liver will start producing RBC's when the marrow is failing. Also the Spleen has a harder time filtering the dead/dying cells therefore filling up with them, which would certainly explain why it is distress and causing us pain or discomfort.

I will find some of the articles that I have read and post the links for you.

Lynn

[Zoe's Life]

Lynn,

I would be very interested in reading any info you have. Thanks!!

Zoe

[Jill2008]

I have mild upper left quadrant pain, sternal and cervical spine discomfort, chest tightness and shortness of breath. Also gastrointestinal symtoms. These symtoms were beginning to subside and then they came back a few months ago when my platelets started to drop again. My local hemotologist relates these symtoms to anxiety but I am not so sure.

[Dick S]

Originally Posted by Jill2008

I have mild upper left quadrant pain, chest tightness and shortness of breath. Also gastrointestinal symtoms. These symtoms were beginning to subside and then they came back a few months ago when my platelets started to drop again. My local hemotologist relates these symtoms to anxiety but I am not so sure.

Jill, I can empathize with you, I have some of the same symptoms and I get the same BS from my hemo. Funny I didn't have any of this before I started MDS.

[towncarlady]

My recommendation is to learn all you can, be pro-active in your care, and don't be shy about your concerns to your doctors. We, as patients, know our bodies and must be our own advocates. I have not been on the forums for many months; so I am behind on sharing my story. Feel free to respond.

[towncarlady]

I have found that sometimes my chest pain is due to upper GI problems.. May I suggest a simple inexpensive test: Purchase Gas Ex Strips. Place in your mouth just as breath strips. Try one first. I prefer the Cinnamon flavor. Watch your diet! As for this baloney about anxiety......let the doctors deal with this! I feel like I have been pretty calm during all this mess for two years.

Jill, please contact me.

[Survivor]

I have similar pain on my left side. Did you ever figure out what caused your pain?

[TammyB]

Originally Posted by Jill2008

I have mild upper left quadrant pain, sternal and cervical spine discomfort, chest tightness and shortness of breath. Also gastrointestinal symtoms. These symtoms were beginning to subside and then they came back a few months ago when my platelets started to drop again. My local hemotologist relates these symtoms to anxiety but I am not so sure.

Jill I have all the same discomforts and pains that you do. I find it very strange that I will tell the doctor this and they really don't get it, they don't seem to think pain is part of the MDS. I am going to have to disagree with them. From what I am reading on forum and other groups many people experience the pain we are. Granted I have a lot of anxiety as well, but don't we all! Who with this disease doesn't feel anxiety. I have always contributed the pain I am in to Revlimid, I have been on it since 2010 and that is a side affect. I am starting to rethink the whole thing.
I have about a month until I am going in for my BMT, unless I get bumped, maybe then this will all stop.

[K Dance]

I'm sorry about your pain and anxiety! I have heard that organic cinnamon in hot tea, drank every day can help with pain. Inorder for it to work you need to drink it pretty regularly. I think you can also find cinnamon supplements. My 77 yr old Dad swears by it. He had a shoulder, and hip replacement, and says the cinnamon tea or tablets have helped him a great deal with the pain. Maybe if you try that with some chamomile tea for the anxiety and see if it helps.
I'll be thinking and praying for you!

God Bless!
K Dance

[Sally C]

My husband's Oncologist always checks his spleen. She said that sometimes platelets gather in the spleen and cause pain and enlargement.
He has never had that pain with MDS.
God Bless,
Sally

[Lulu]

Do you have any other gut symptoms? Am asking as I have had upper RH pain for years, always put down to "referred pain" from IBS. Whilst I don't buy into their dismissive language, I am wondering if there is a connection.

I have been treating my MDS as a malabsorption of fat soluble vitamins ("clutching at straws" was my consultants words) and my blood counts have improved. Was reliant on transfusions until September last year, but Hg has improved recently and at last count was 13.5. I am wary of talking about this in case I jinx it, but if anyone wants to PM me I am happy to chat. Not trying to sell anything.

[mike b.]

It seems since I've been diagnosed with MDS that I have more pain than usual . My pain has been as where you have described it and I went thru a battery of tests at Moffitt and they couldn't come up with an answer. My main concern of pain since getting this has been extreme headaches and they are not migraines. I have these headaches non-stop daily and thru the night and even the medicine I take for it doesn't help (tramadol 50mg x 2 )I know where you're coming from and hope you find the answer !

[riccd2001]

I was suffering with constant headaches a couple years ago; that lead to a mild stroke and hospitalization for a couple weeks.

It took a couple MRIs to confirm some brain bleeds/clots which were treated with Heparin IVs followed by coumadin. You may want to discuss with your doc and get a referral with a neurologist.

Just sayin' it's not advisable to put it off.