I need help please

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I am a 35 year old male.I was diagnosed with burkitts lymphoma +/- 5 years ago. I did 6 treatments of hyper cvad chemotheraphy. Thereafter things just slowly went backwards.. My speech deteriorated - I have very broken speech today - Initially we thought this was all and decided to live with it, but there is more, my social skills and self esteem also took a huge knock and is now virtualy zero.. I was a very efficient and professional individual, who had to forcibly give up a lot over the last few years and  slowly been reduced to someone who hides from any social interaction.

I went for an MRI when my speech started deteriorating - while getting my last chemo.. And then a year later again - there was no difference. I have been to one hospital's neurology unit - they have done all the tests possible, but could not find anything - other than it not relating in any way to the cancer itself. I have been for speech theraphy, that did not help at all.

Here is a full list of my current symptoms:

Balance not the same.

Speech gone. - very hoarse and salivated.

Hearing worse.

Social interaction always awkward.

Very insecure.

Personality change.

Very slow with almost anything.

My thought process is not what it used to be, but as you can see, I am still very capable of writing. I drive.

I have constantly turned to the internet and tried this & that - but not getting to the bottom of this.

My wife is expectant (we froze semen before the chemo started) with twins and I don't want to be a father like this..

If you have any idea what could have gone wrong please get in touch..

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9 Replies

  • Posted

    Hi, Ryan this is Ellen. Congratulations, having twins, wow they are blessings. You can still drive, that is a lot. My condition: weakness, numbness, pins ad needles, twitching muscle spasm. Tests are being done, maybe another month from now I will have a definitive answer.  I am limping for more than a month now, sometimes cannot drive. Your condition is probably worst than mine, I stay positive and cheeful despite what is happening. 4 years ago my husband passed away I lost him thru ALS he only live about 7 months  after feeling symptoms, my sysptoms are very similar. Why Am I saying these things, I am happy for you you can still drive, and write so well. Please believe we are here for a reason. I will think of  you and pray also. 

    Ellen

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    • Posted

      Hi Ellenh.. I replied earlier - not sure if it went through, or it was to be moderated first.. 

      Let me reply again.. Thank you, yes super excited, but I certainly wish things were better though.. I mean for the first few years of their life I will seem "normal" to them and then they will start wondering why daddy speaks like that.

      Have you look at vitamin b12 supplements - I came across it recently, and a few of your symptoms remind me of a possible b12 defficiency..

      I am sorry to hear about your husband, but please do not think that it is also your lot in this life. 

      Yes, I constantly have to remind myself that the fire inside me burns brighter than the fires around me.. It is difficult to stay positive sometimes, but all we can do is try..I just wish this happened at the end cycle of my life though and not virtually at the start.

      Thank you for keeping me in your prayers, I will do the same..

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  • Posted

    Welcome, Ryan, yes I am trying B12 vitamins whether it helps or not I am not certain, but will continue anyway.smile This morning, I had remember you in my prayers.  I was happy to do that.  Continue to be positive even in this time, when you feel sad and disappointed think that you are not the only one who has health problem.  One time, before my husband passed, we went to Germany for a 3 weeks vacation, in  one of the tours we saw a lady in the bus with us, her face was deformed and skin was burnt all over. It was a very touching moment for me. I always remember her in prayers so she can go on with her life. She might not know but I am here for her remembering her in her time of difficulties.

    Take care, you are blessed with your wife and children. I am blessed with my 22 yrs old daughter who just graduated from college and after 4 days got job offered at UK hospital, blessed with my 13 years old who sings so nicely, blessed with a fiancee who is a very hard working person.  Blessed  with my job, etc. Pray I can drive smoothly everyday. smile

    Ellen

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    • Posted

      How long have you been on b12? I am just waiting for my sublinguals to arrive (ordered them beginning of the week) then I am starting.. I am hopeful it will help.

      Oh yes, I see many people often that are far worse off - and they moved on..I have difficulty "moving on" But will have to.

       

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  • Posted

    Been taking Vitamin B12 for 3 weeks, do not know if this will help, crossing my fingers. Monday, I will know the result of my spine MRI, x rays  of my hands and neck.  Then, Friday next week will know as to when will be the repeat of my blood  test. How about, you how are you doing?

    My best to you.

    Ellen

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    • Posted

      I started taking 100milligram pills this week (the strongest I could find in this little town)...But they are very weak.. the pills  I ordered are 1000milligrams, so there should be a vast difference - it is too early for me to say if it works - there are moments when I feel better and there are moments where I feel worse - so I don't know.

      What strength are you on? Sublinguals or shots?

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  • Posted

    Tomorrow, Sunday, will pray for you and all the sick people at church.

    When are you and your wife going to have the twins? I bet you are very excited.

    Right now I feel a little bit "better" just like when you said there are days you feel good.  I took advantage of this day to sort out some things from where I moved, gathered some flowers from my yard, and cooked squash from my garden. This is awesome!  Have agreat day to you and your family.

    Ellen

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    • Posted

      The cesearian is scheduled for the 12th of January - We are very excited, started gathering a few things .

      We have two bibs ,a normal and camping cot and a few other things. But I am sure as time gets closer, our families will pitch in, and we will receive lots more.

      That is fantastic, it feels great to cook something that grew in your own garden.. We have an apricot tree that yields a high amount of fruit each year, and we can make and bottle enough jam until the next year..

      I am curuious to know the strength of the b12 you are using and in what form?

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  • Posted

    You need a thyroid test and then to take levothyroxine.

    Your speech, social anxiety, sluggishness, esteem loss, darkness of mood, maintained ability to write but not speak fluently, balance etc are EXACTLY what I had. Trust me Ryan. You need a thyroid test, and then Levothyroxine. You won't be perfect again immediately, but when you get the levels right those issues will go away.

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