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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

My dad probably has myeloma, could I have it too?

by ladysherlockian on Mon Jan 02, 2017 12:56 am

Hello from Poland.

We had the worst Christmas ever when my dad had to be taken to the hospital. On the second day of Christmas he had the attack of a terrible pain in his back. We called the ambulance and they said it might be the kidneys, but when he got some painkillers in the hospital, they did not really help to alleviate the pain. Now it turns out some bones in his spine simply broke, which explains why he was in so much pain. Earlier he complained about pain in his side, and it turned out there were broken ribs there.

Now dad (75) is at hospital, his results are very poor, and the doctors suppose he may have multiple myeloma, I have read about this cancer online and the symptoms described there fit him perfectly. We do not have the results of all the examinations yet, but I do not have much hope that the diagnosis would be different than the myeloma. His spine is in a terrible state, kidneys are also devastated by the illness, and he has anaemia and high creatinine.

The problem is he has had this anaemia for quite a long time, and his doctor did nothing with this anaemia. She did not send him to take additional tests, and the sickness (myeloma as we guess) was free to develop as it pleased. He has had the anaemia from 2011 at least, if not earlier. It was when he went to the hospital because of the anaemia. He used to eat a lot of flax seed and we thought the anaemia was because of it, and his doctor also believed that the anaemia was because he did not have enough iron, while it now turns out that the anaemia was rather the result of myeloma than a "normal" kind of anaemia caused by iron deficiency.

Now I am worried we could have done something earlier, but until now we had no idea that such as thing as myeloma existed. I fear how long dad would be still with us. From what I've read his symptoms look like the third stage of myeloma. I am afraid of losing him soon and I have no idea how to help and support him if I am so sad and depressed because of it, I guess it would be better not to show tears etc. in front of dad and give him hope instead, but how if I have so little hope myself?

I was reading a lot about this illness and its symptoms, and I wonder whether it is possible that I may also have it, I know it is not a hereditary disease, but I've read that it may be more frequent in some families especially when there is a close affinity.

I am relatively young as I would be 32 this March, and I am female so I guess outside the most common demographic of the disease, but as I was reading about it, I noticed I have some symptoms. Of course it may be because I have been reading so much about it, but I am worried and I cannot talk about it with my Mum who is already heart-broken because of dad's condition.

In 2012 I had a strange neurological problem, I caught a cold ( I have allergy and catch colds quite easily, and it takes a lot of time for me to be cured of a common cold), and as I was getting better, I lost my eyesight temporarily. It was very strange as I could not see anything for a moment and then I could see again, and the time passing between each cycle was shorter and shorter. I went to the hospital and quickly got better. The doctors don't really know what it was but it did not return.

However, after this event I started to have some delicate bone pains in my right leg in the calf, they were like a piercing arrow, but the pain was not very intense and it usually lasted only for a second or a couple of seconds and disappeared. I told my neurologist about it but she did not worry about it, so I guess it was nothing. I also used to have these "lightning bolts" or arrows in my head, a sudden pain when I was for example listening to a lecture, which passed after a couple of seconds (it was very small pain). Now I have more pains in this leg, not only in the calf but also in the knee and above. When I am lying in bed it feels as if it was paralysed, but I can move it quite all right.

I also get these strange pains in forearms and fingers, in the other leg and its toes. They last no longer than a few seconds and are very delicate, but now I've read about myeloma I am a bit worried. There are also some small pains in the back which we associated with uncomfortable bed, but from what I've read this is where the sickness is usually located and it is also where my dad has it.

Also, dad has been complaining about having a parched mouth for some time, and now I know this is one of the symptoms of myeloma. I noticed my mouth is also parched more often than earlier, but it may be because I drink less now that I visit dad in hospital, I don't want to use the toilet in the hospital so usually I drink very little before leaving.

I also had to take over some physical work which my dad used to do until now, such as bringing the firewood to the fireplace, and I am not really used to this kind of work, so maybe that is why I noticed these pains.

Of course, I don't have any anaemia or other symptoms, though to be honest, I haven't had any blood or urine testing for some time. I am healthy except for the allergy, and of course I cannot do any tests now so as not to make Mum annoyed. She is already terribly afraid about dad and depressed as well. She is not sure whether we would handle living without dad and she is of course worried about him.

Sorry for writing so much about myself, but I do not want to worry my Mum unnecessarily, so I decided to share it here. I also apologise for my bad English as it is not my native language (I am from Poland) and I am particularly unfamiliar with medical terminology. Thanks :)

ladysherlockian
Who do you know with myeloma?: dad
When were you/they diagnosed?: January 2017
Age at diagnosis: 75

Re: My dad probably has myeloma, could I have it too?

by Paulina on Mon Jan 02, 2017 8:51 am

Dear Lady Sherlockian,

I was so sad to read your worried letter. I hope the doctors can ease your father's pain and help his condition. If your mind can't get off the idea that you may be showing symptoms of multiple myeloma then you should go to a doctor for a diagnosis. I had a routine annual blood test and it showed that my proteins were elevated, and so my doctor sent me to a hematologist. He ordered the tests of a bone marrow biopsy, a set of X-rays and a 24 hour urine sample to be analyzed. It confirmed multiple myeloma.

It's always better to try to use your mental energy to determine a plan of action rather than worry in fear of the unknown. If you have access to a health system that can help you get at least the first simple test done, then your doctors could determine if you need further testing.

I am a 67-year-old woman who has had a diagnosis of multiple myeloma for over 3 years, and it has been a journey, ups and downs, but knowing and confronting the truth seems to give me strength and courage. I wish you and your family will find some joyful times in the coming year, in between the challenges and sadness that you are already experiencing. Peace to your Father , and your family from Paulina in the United States.

Paulina

Re: My dad probably has myeloma, could I have it too?

by ladysherlockian on Mon Jan 02, 2017 2:02 pm

Thank you for your heart-warming post, Paulina.

ladysherlockian
Who do you know with myeloma?: dad
When were you/they diagnosed?: January 2017
Age at diagnosis: 75

Re: My dad probably has myeloma, could I have it too?

by Little Monkey on Mon Jan 02, 2017 5:02 pm

Hi Ladysherlockian,

Your English is fine,

As for your health issues, since there is a possible weak genetic link with myeloma, I second Paulina's suggestion about getting some testing done for myeloma and related illnesses, such as MGUS.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: My dad probably has myeloma, could I have it too?

by ladysherlockian on Wed Jan 04, 2017 2:52 pm

Thanks for all kind replies. I guess I must have over-reacted, Since I posted, I've read that family members of cancer patients may have some muscle tensions caused by stress, in the areas of the spine, hand and legs, and head, and I guess I must have mistaken these symptoms of severe stress with bone pains ;)

ladysherlockian
Who do you know with myeloma?: dad
When were you/they diagnosed?: January 2017
Age at diagnosis: 75

Re: My dad probably has myeloma, could I have it too?

by ladysherlockian on Thu Apr 06, 2017 10:29 am

It's me again, As you know from my other posts, my beloved Dad passed away this February, and since his funeral I have been having strange obsessive thoughts that I am going to die too. I tried to get rid of these thoughts, but they keep on returning, and it seems to me that I also may have Dad's myeloma and that I will soon die of it. I wonder if this is some form of grief or whether I may really be affected by the disease?

My body does everything to confirm my fears, as I have some pains in various places in my spine and in the ribs, which bring Dad's myeloma to my mind, These pains are not very severe and they only last a couple of minutes. They are a sort of short piercing pains in various parts of my spine and ribs. There are also similar pains in my hands, legs, sometimes my head hurts as if the skull bones were affected.

This is not all since I noticed that I urinate more frequently and sometimes there are bubbles in the urine, similar to the ones I noticed in Dad's urine. And I drink much more, my mouth often feels parched soon after I drank some water (though I read aloud a lot, too).

The bone pains really worry me, They occur most frequently during the night, when I am lying on my back, and sometimes I cannot sleep because of them, When I wake up in the morning these pains are present (in the spine and the ribs, particularly if I slept on my side), and when I wake up it seems to me that I would not be able to get up, but I get up all right, and as the day progresses, the spine and rib pains gradually disappear, though they usually come back in the evening. They often plague me during the night, though not every night, when they are stronger, sometimes I feel a bit nauseous when they occur, but it passes quickly.

I am afraid of going to the doctor as now I am living with my Mum to help her and it would certainly worry her if she saw me going to the doctor, I have not told her about my worries yet as I believe these pains are caused by extreme form of grief and I have them because I know so much about Dad's disease and my grieving mind generates these symptoms. I do not worry Mum without any serious reason, and that is why I am not going to visit the doctor, I am also ashamed that it would turn out I am a hysterical woman or a hypochondriac. What do you think about my concerns? Any advice? Thanks :)

ladysherlockian
Who do you know with myeloma?: dad
When were you/they diagnosed?: January 2017
Age at diagnosis: 75


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