I have not been diagnosed with anything yet.
14 months ago I took some very toxic and powerful HIV medications as post-exposure prophylaxis. The goal was to prevent infection after an exposure. The medications HIV patients take, and which I took, are known to cause blood diseases and possibly blood cancers. Very little is known for sure, but one thing is known: They can adversely affect the bone marrow "situation". I was only on them for about 30 days, and struggled through the many severe side effects.
After finishing the medications I dealt with bouts of severe fatigue and an aching / pain under my arms along my rib cage. It would migrate towards the back, then towards the front on various days, then simply go away for a few weeks, along with the fatigue. They always appeared together though. Doctors had absolutely no idea what I meant, and even right now I don't know if that qualifies as "bone pain" but it was definitely on the sides of my body on my ribs. It was more of an ongoing pulsating aching that lasted days & days.
After 8 months of this I developed neuropathy symptoms, severe joint pain in hands, feet, legs, everywhere. Inflammation in muscles and aching in clavicle bone area too. No idea what it was. Then muscle twitching set in, and that has remained along with neuropathies in my foot ever since. Clean MRI for Multiple Sclerosis, clean EMG, and mostly normal bloodwork.
I did get some immune testing back and my IL-2 was sky high. One doctor called it very high, another said thats normal. But I see association with high IL-2 and myeloma when I do my research. I was told that fasciculation (twitching) syndromes like Neuromyotonia have some association with Myeloma, so I am starting to really wonder if that's whats going on.
Can anyone provide any input for me? Im going on 14 months of a lot of discomfort and I would really like some answers.
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Re: Seeking an Explanation
Good afternoon,
Your pain mirrors precisely the problems I had in early 2011. I investigated the problem with a chiropractor and myotherapist.......the root cause being a mystery to both.
After some months passing, a lump broke my sternum and surrounding bones, rushed to hospital, I had a doctor sitting at the end of the bed explaining myeloma.
3 years later, here we are, a Revlimid trial, off work, shingles and fatigue you wouldn't believe.
The original underarm, rib pain was particularly bad in bed and when lifting. No wonder!!!!!
I hope yours is simply a minor problem easily solved but as I read your offering, I couldn't help but flashback 3 years to the origin of my myeloma.
Your pain mirrors precisely the problems I had in early 2011. I investigated the problem with a chiropractor and myotherapist.......the root cause being a mystery to both.
After some months passing, a lump broke my sternum and surrounding bones, rushed to hospital, I had a doctor sitting at the end of the bed explaining myeloma.
3 years later, here we are, a Revlimid trial, off work, shingles and fatigue you wouldn't believe.
The original underarm, rib pain was particularly bad in bed and when lifting. No wonder!!!!!
I hope yours is simply a minor problem easily solved but as I read your offering, I couldn't help but flashback 3 years to the origin of my myeloma.
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Alex
Re: Seeking an Explanation
At this stage all I have is some pretty dull lower back pain. I have dealt with on and off pain on the sides of my body up under my armpits as well associated with fatigue, but this seems to go away when I exercise.
I have developed bodywide muscle twitching and fasciculations. Exercise intolerance, food intolerances, and some neuropathy. EMG MRI for multiple sclerosis normal.
Someone randomly mentioned that neuromyotonia (bodywide twitching) is sometimes associated with Myeloma.
My bloodwork is all 100% normal hemoglobin, no M spike on electophoresis, my calcium, immunoglobulin A,G,M normal. My immunofixation. My beta 2 immunoglobulin, red blood cell count is happily abundant, etc all normal.
However recent immune function bloodwork show my IL-2 (interleuken 2) levels to be sky high. The range was something like 3 - 8 and I am an 18.
My IL 4, 23, 17, and 15 also high normal, or above range.
My friends mother who has Myeloma told me her IL 2 and IL 4 were both very high as well.
Do I have anything to be concerned about? I realize its not that simple but I am stressing beyond belief right now.
I have developed bodywide muscle twitching and fasciculations. Exercise intolerance, food intolerances, and some neuropathy. EMG MRI for multiple sclerosis normal.
Someone randomly mentioned that neuromyotonia (bodywide twitching) is sometimes associated with Myeloma.
My bloodwork is all 100% normal hemoglobin, no M spike on electophoresis, my calcium, immunoglobulin A,G,M normal. My immunofixation. My beta 2 immunoglobulin, red blood cell count is happily abundant, etc all normal.
However recent immune function bloodwork show my IL-2 (interleuken 2) levels to be sky high. The range was something like 3 - 8 and I am an 18.
My IL 4, 23, 17, and 15 also high normal, or above range.
My friends mother who has Myeloma told me her IL 2 and IL 4 were both very high as well.
Do I have anything to be concerned about? I realize its not that simple but I am stressing beyond belief right now.
Re: Seeking an Explanation
Hello, I'm sorry you are going through this. I think the best thing to do is to consult with your physicians to see if a referral to other specialists are necessary. While I think this forum is fantastic, I don't think it will be able to give you a direct answer one way or another.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
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