[Motherof7]

Multiple myeloma or hemochromatosis?

by Motherof7 on Wed May 15, 2013 2:10 pm

Hi! I can fully appreciate the complications of multiple myeloma. My husband has some form of it at the age of 43. He's been very sick now for 18 months but he's had complications for ten years now when he started getting big infections in his joints that didn't respond very well to antibiotics. 7 years ago he got a bad blood clot in his shoulder that didn't go away with blood thinners. He ended up in the intensive care unit at a large hospital with TPA getting pumped into his arm. 9 months later he ended up in the hospital for 5 weeks before we found our he was allergic to the warfarin. Then soon afterwards he got diagnosed with rheumatoid arthritis.

We refused medical pills for it and he went on a strict no acidy foods diet and he actually kind of got rid of it. Also he used a cistus oil on his nodules from rheumatoid and they dissolved. In the meantime he was working hard and setting up his own logging business. In December 2012 his health went downhill and he ended up in a wheelchair for awhile. His legs just didn't work. The doctors diagnosed him with a mental illness so severe that his body didn't work anymore. While in the mental ward of a large hospital they found his monoclonal m protien. That's when the drs told us he didn't really have a mental illness and if he did it came from his medical issues.

4 months later his dad got diagnosed with hemochromatosis(high iron). They tested my husband and found out he had very high iron. Ferritin was at 3800 and its not supposed to be over 400. He got his iron under control but not before his body shut down and he ended you the hospital for 2 weeks and not being able to eat or drink for 5 days. He also got another blood clot in the same arm and hes on xaltero which works for him.

After that we went to dr Castillo in Mexico for a 20 days of chelation. That didn't make much of a difference. It just gave him a false boost of energy. We tried for disability in feb 2013 and on his reports found a monoclonal m protien disease and multiple m protien. Having never heard of that before I looked it up and found multiple myeloma. Now his c3 and c4 vertebrae have crushed or are out of place. So is this the first sign of multiple myeloma or is it from high iron for so long? Body shut down, was that multiple myeloma or high iron? We're waiting for a ct scan and bone scan but I think it would be high time to start treatment.

He has severe stomach pain as well. He has h pylori infection also h pylori ulcer that has gotten treated. I'm wondering if he also has amyloidosis, but so far the drs haven't even come out and told us about multiple myeloma. We read it on the medical papers and the dr in emergency confirmed that hubby has it.

Sorry it's so long. Lots of medical stuff going on

[kristina]

Re: Multiple myeloma or hemochromatosis?

by kristina on Wed May 15, 2013 4:59 pm

Hi Mother,

Sounds like you and your husband of have been through quite a bit! Your post caught my eye due to your husbands blood clots. I am learning about MGUS and multiple myeloma, having been diagnosed in April with MGUS.

Has anyone done coagulation work up's on your husband to find out why he is throwing so many clots? I had 2 pulmonary embolisms in 2006. At that time I tested positive for what's called the Lupus Anticoagulant. (It is NOT the same thing as having Lupus). After my first clot, I was put on Warfin (Coumiden), but my second clot came 2 weeks later and was massive. When I threw the 2nd clot my INR was 4.0, which is considered theraputic. I was told I had Coumiden failure, I was then put on Lovenox. I had to go off Lovenox in 2011 due to insurance changes, and I could not afford the copay. I was on Pradaxa for almost a year, but then had a embolic shower to the brain, which is basically a bunch of tiny strokes. Although I took Pradaxa for 9 months with out clotting, I was just lucky that my stroke wasn't disabling and that my doctor realized my clotting issue couldn't be helped with traditional anti-coagulant medication. I found out that I have significantly elevated levels of Factor VIII and Von Willebrand, and the only anticoagulant known to combat those is Lovenox, so I am back on it and will be the rest of my life.

So, I would really recommend you make sure your husband has been screened for the Lupus Anticoagulant, Factor V Leiden, Factor VIII, and Von Willebrand Factors. I am sure there are other coagulation factors to consider, but those are the ones I am familiar with. It is very important that these things be checked because not all types of anti-coagulant medication works on the different causes of clotting.

I have Bence Jones protein in my urine, which is what led to my MGUS diagsnosis. I am awaiting biopsy results to see if I am still in the MGUS category or have moved into Smoldering. I have done a lot of research and have found links between clotting issues and MGUS/multiple myeloma. I don't know much about Iron levels in Myeloma.

I hope you are able to get things figured out soon. I know how increadiably difficult it is to have such major medical issues going on and not have a clear idea of what's wrong. It's hard to fight when you don't really know what it is you are fighting. Continue to do lots of research, and be sure and get copies of all lab work and tests done on your husband and start keeping them organized in a binder. Much easier to track issues, and it really helps if you are seeing several of doctors-helps keep everyone on the same page so that you are not paying for repeat lab tests. Keep your head up and know that you are not alone!

[Motherof7]

Re: Multiple myeloma or hemochromatosis?

by Motherof7 on Wed May 15, 2013 6:44 pm

Hi yes it's been a battle! But it's half the battle when the drs realize there is a serious problem which it took years for them to see. I'm sure the drs see lots of strange cases too:) my husband has a family history of blood clots, mother and sister. Also his grandparents died of blood clots. He has a prothrombin gene mutation but only half of it so he shouldn't have blood clots just to pass the gene along. David's blood gets so thick even while on blood thinners that the blood doesn't flow into the needle. About 2 weeks ago they poked his vein twice and no blood came out. So he had to rest and drink and then it sort of rolled into the test tube. The other day the blood stopped in between so they had to poke the other arm yet. He gets blue spots of bruising on his skin without injury. We where hoping that once his iron levels got under control the blood would look better too. It's almost black some days. He drinks lots of water also the sport drinks to get his electrolytes up. He's given blood once a week for the last 6 months to get his iron under control. But I'll have to ask the drs about those other genetic disorders. Does your blood get physically so thick and black? His inr is usually good. David has protien in his urine as well. The drs told us and i was thinking "so? Just find his problem. Protien in urine is not a big problem lol" but I've learnt different. also with physical excersise his feet get very cold. I'm wondering if his heart just can't work hard enough when he gets tired. We have heating pads all over the house for his feet:)

[kristina]

Re: Multiple myeloma or hemochromatosis?

by kristina on Wed May 15, 2013 7:47 pm

It is a battle to get doctor's to take things seriously! I know many of my initial symptoms were vague and subjective. They have never really been able to line up my symptoms with my abnormal labs and come to a conclusion. I have heard countless times "what an interesting patient" I am! Definatley not a category I want to be in!

My blood is still fairly thick-even taking Lovenox injections twice a day, as well as asprin once a day, I still don't bruise when I injure myself. I haven't had many issues with having lab work done, although occasionally a report will say the sample had issues with clotting that could have impacted results. They monitor me with Anti-XA lab tests to make sure I am theraputic on Lovenox. My last test showed I was over-theraputic, but it still doesn't seem to effect how high my Factor VIII and Von Wilebrand tests are. I still suffer from recurring headaches, fatigue, and yep- I can relate to cold toes! Mine look purple all the time. I have trouble with my heart (palpatations and elevated heartbeat), but medication seems to help that. I know hearts work harder when the blood is thicker.

It can be a lot for anyone to take in. It seems like your husband is lucky to have a supporting spouse willing to do some research and understand the issues he is dealing with. I can only imagine how difficult it is to deal with significant health issues from a spouse. Your expected to be strong, to take up all the slack, and understand the crazy mood swings of those not feeling good. I almost think it's easier to be the one that's sick. Anyway, Kuddos to you for being so supportive and know that I'm sure your care and concern mean the world to him!