Possible symptoms?

[camiboxer]

I spent the day with my dad yesterday and something he said seemed a little odd to me. He is not one who enjoys taking meds. Would prefer to not take anything. Before his bypass in 2000 he didn’t even take aspirin for a headache.
Anyhow, while at a grocery store yesterday he said he wanted to look at a certain product he had seen advertised on TV.
“Jointflex”. Glucosimine with chronditian (sp?). I told him this was for joint pain and asked him if he was having joint pain. He didn’t answer me and once he determined the amounts to take with the price involved he walked away.
He also mentioned that he was up early yesterday to make the trip to me (two hours) and he wanted to head home, he had a long trip back and this gave me the impression that he was tired. He looked normal and acted normal.
He is quite stoic. I don’t know if I am looking for something that would tell me the MDS is finally getting to him or if I am just being overly paranoid.
The joint pain bothers me. I don’t see any reason to check out a product unless you have symptoms that it might help.
Does MDS cause joint pain?

[sdrake]

Susi,

I understand what you say about “looking for something” and being “overly paranoid”. Since Dad’s diagnosis I can hardly let him sneeze without getting overly concerned. I am always looking for signs and symptoms. I try not to, but it is difficult. He teases me about being his other doctor, and thankfully understands it is all out of love.

I know my Dad has more aches and pains since being diagnosed. His hips seem to bother him more. Other people on the forum will be able to tell you more about specifics.

Take care,
Shari

[Frankie]

Yes…I have joint and bone pain.
A lot of it, I believe, has to do with being weak and not as active as I used to be…. my muscle grip isn’t as strong. Taking things like Revlimid and Neulasta also increase my joint pain.

Frankie

[Kathy7964]

Susi & Shari–you both sound just like me with my Dad. My Dad wouldn’t even take ANY medicine before all this either and had quadruple (spelling) 4 bypass surgery too in 2000. He has the same symptoms too but doesn’t really say anything. I’ll see him lift his arms and move them around, squeeze his hands and stuff. The doctors thought his anemia was related to having rhematoid arthritis but they were wrong. But since he has been diagnosed with MDS he has had so many other problems but he is hanging in there and staying positive.

If I am in another room, I go and check on him periodically too. It’s hard because he keeps so much to himself and never complains. I think I do enough worrying and complaining for him!

Kathy

[Neil]

Hi Susi,
Joint/bone pain are associated with MDS. Particularly, hips, legs and shoulders . MDS is a form of bone marrow failure. The pain is generally associated with the areas of the greatest bone mass— hips, legs shoulders.
Kind of doubt Jointflex will do anything to stimulate normal bone marrow function.
Has your Dad discussed Procrit or Aranesp with his doc? If his Epo level is low either drug might boost his Red cell counts and help reduce his fatigue. It really helped me.

[hmblume]

[I believe] Glucosamine with or without Chondratin will not help arthritis (New England Journal of Medicine, earlier this year). Those of us who still pop Glucosamine hope that it will help the cartilege, which can be pretty thin in former athletes.
Gout websites list gout (and I assume gout-like maladies) as a co-morbidity of leukemia, and I would also assume also MDS with some leukemia-similar blood counts. Also, some meds and especiallly anti-inflammatories are bad for those with low platelets.
To have related maladies is unsurprising, and diagnoses are probably less sure and less likely to be offered. Good luck

[camiboxer]

Dad’s EPO levels are slightly elevated, (explained to us as they are doing their job so nothing required to jump start-“wake-up” the kidneys to produce more)?
I plan on busting Dad next week at the Dr’s appt when he tells them “Everything is fine! I feel perfectly normal”, “I can do anything I want to do, if I am tired I take a nap”, “Totally normal at my age (66), to slow down a bit”.

I can already hear him as this is his normal response. I don’t really think he gives it much thought. He wouldn’t be interested in some product he saw on TV if he didn’t have a symptom it claimed to help. I feel like I am on “Dad police patrol”.

[Author]

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