I am new to the Beacon but have been reading your posts for a while now and I have read some very valuable information about myeloma. But, since every patient is different, I would like to share my story in hopes I can receive some feedback about my specific situation before I go see my doctor again. So here is my story:
I am 37 years old, overweight for the last 4 years, and have suffered from a deep achy bone pain that started in my left foot when I was a child. Since then, the pain has worked its way up to my thighs and both of my legs. This pain comes and goes and doesn’t change with movement, but since no pain relievers work, sometimes I get some relief when I sit on my legs until they go numb and then release.
As you can imagine, my fear now is how will I get relief when it gets to my hips or ribs? Well the pain is already in my hip bones, both sides also. In addition to that, I started with bone pain in my lower back / hips since 2004, and that is the type of pain that hurts while sitting or lying flat in my back while in bed. The problem now is that I have a combination of both pains, in my hips / lower back and my right leg for the last 2 years, and the doctors I have seen had not been able to find any definitive until recently. The last 2 months have been very difficult because the pain is constant and the few times I get relief, my right thigh feels sore.
I have had the following results, some high for a while now
Calcium – Slightly elevated since 2006
Elevated liver enzymes 2 years ago
Alkaline phosphatase 121
On medication for hypothyroid
High cholesterol
Vitamin D deficiency – on medication now - 13.8
Osteoporosis in left side hip
Had x-rays done this week and found: minimal degenerative changes involving the lower thoracic spine. Early sclerosis and osteophytes involving mid and lower thoracic spine. Early degenerative changes.
I’ve had a complete hysterectomy due to scar tissue in 2008
Appendectomy 2004
I have suffered from migraines since 2000
So in all this, the bone pain that is described as myeloma is what I feel and now constant for the last 3 months. I have pain under my left rib that comes and goes, I can’t sleep, and during the day I feel tired – not sleepy, just tired. I don’t feel hungry anymore, the only reason I do eat and continue to be overweight is because If I don’t eat something, I start feeling very shaky and weak.
I am scheduled for a CT of my hips and back and doctor also found I might have a hiatal hernia, have to schedule an endoscopy. The pain in my bones is so strong, I didn’t even realized how tender I was in that area.
I know this is a lot of info, but I am desperate, I don’t want to be in pain anymore, and I don’t want to take stronger pain medicine, I refuse.
Am I wrong to think I should ask my doctor to have me evaluated for myeloma? And If it was myeloma, wouldn’t the x-rays have shown that since my whole back was checked?
I thank you in advance for your time and feedback.
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Re: Should I be evaluated for multiple myeloma?
Hello Chinita:
Just trying to simplify the issue. Suggest to the doctor to get the SPEP test. SPEP stands for serum protein electrophoresis. If its zero, no multiple myeloma. If it's high, yes. If it's less than two, probably at a pre-multiple myeloma stage. There are more complexities than this, but this is a good starting point.
Good luck
Just trying to simplify the issue. Suggest to the doctor to get the SPEP test. SPEP stands for serum protein electrophoresis. If its zero, no multiple myeloma. If it's high, yes. If it's less than two, probably at a pre-multiple myeloma stage. There are more complexities than this, but this is a good starting point.
Good luck
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JPC - Name: JPC
Re: Should I be evaluated for multiple myeloma?
Chinita,
Not all cases of multiple myeloma will show up on an x-ray; a plasmacytoma on an x-ray can take the form of a "winking owl" (hard to explain, the link below might explain better)
http://img.medscape.com/fullsize/migrated/421/516/nf421516.fig4.jpg
Not all cases of multiple myeloma will show up on an x-ray; a plasmacytoma on an x-ray can take the form of a "winking owl" (hard to explain, the link below might explain better)
http://img.medscape.com/fullsize/migrated/421/516/nf421516.fig4.jpg
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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: Should I be evaluated for multiple myeloma?
Chinita,
The pain you describe "...have suffered from a deep achy bone pain that started in my left foot when I was a child. Since then, the pain has worked its way up to my thighs and both of my legs" doesn't sound like the kind of pain associated with multiple myeloma, especially since you started developing it as a child.
I'm not a doc, but what you describe sounds more like some sort of autoimmune disease such as fibromyalgia. Autoimmune disease can be hard to diagnose. Have you been to a rheumatologist or a neurologist? It also might be worth going to a top, large institution with many different specialists (such as the Mayo) to get to the bottom of this.
In the meantime, you might want to ask your doc about potentially trying Lyrica since pain relievers don't seem to provide you with any relief?
The pain you describe "...have suffered from a deep achy bone pain that started in my left foot when I was a child. Since then, the pain has worked its way up to my thighs and both of my legs" doesn't sound like the kind of pain associated with multiple myeloma, especially since you started developing it as a child.
I'm not a doc, but what you describe sounds more like some sort of autoimmune disease such as fibromyalgia. Autoimmune disease can be hard to diagnose. Have you been to a rheumatologist or a neurologist? It also might be worth going to a top, large institution with many different specialists (such as the Mayo) to get to the bottom of this.
In the meantime, you might want to ask your doc about potentially trying Lyrica since pain relievers don't seem to provide you with any relief?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
4 posts
• Page 1 of 1