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Unexplained possible nerve pain??


MomSCLC

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My mom has SCLC and has always since had these “spasms.” Bouts of intense pain that occurs in different places and moves around. No doctor has been able to figure out why they’re happening or how to treat them. Negative tests for paraneoplastic syndromes, autoimmune disorders, nutrient deficiencies, etc.

She has lesions near her spine, but not actually in/on the spine itself. Neurologist is fairly sure it’s nerve pain of some kind. 

Opioids help, but not completely effective and she doesn’t like taking them. Gabapentin helps, but not enough. Tried various CBD/THC products that didn’t help either. The only other thing we can think of is acupuncture but that feels like a crapshoot. Someone suggested a rheumatologist but I don’t know how effective that would be since she has no autoimmune disorders. 
 

It’s reducing her quality of life by a lot. Her treatment has gone well but these are still a problem (oddly, they almost vanished after first round of chemo then started coming back afterwards?) I’m desperate to find some answers. If you have any information, suggestions, ideas, etc, even if just slightly related, please comment.

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11 hours ago, Tom Galli said:

This is a long shot but ask her physicians to check her blood salt (magnesium, sodium etc) levels. I had (have) much the same symptoms and my cause is very low magnesium. 

Stay the course. 

Tom

Unfortunately I think they’ve tested for that already. I don’t know if it’s possible for the tests to be inaccurate, so maybe I’ll ask about getting another one? It’s strange because it seems like these symptoms would be a dead ringer for low magnesium/sodium. 
 

Regardless, thank you for your comment. I’ll keep digging. Take care.

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12 hours ago, Tom Galli said:

This is a long shot but ask her physicians to check her blood salt (magnesium, sodium etc) levels. I had (have) much the same symptoms and my cause is very low magnesium. 

Stay the course. 

Tom

Would you mind sharing some more details about your symptoms? I’ve gotten some more details from my dad regarding mom’s test results after asking about magnesium. He says they tested for sodium which was fine, but did not test for magnesium.

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My pain stems from intense muscle cramps: hands, feet, legs, and abdomen. The cramping is very painful and I lose the ability to move the affected area. I take 1000mg of Magnesium daily as a supplement (500mg AM & 500mg PM) prescribed by my medical oncologist. This results from a side effect of my chemotherapy (Taxol and Carboplatin).

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Thank you Tom, I really appreciate the info. I found out through some research that the traditional serum/blood test for magnesium can sometimes not properly detect low magnesium, so it might be possible that magnesium is actually the culprit. We'll see if the oncologist has any thoughts on that and hopefully get some answers.

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I hope magnesium gives some relief. I suggest you also try acupuncture. As you say, it's a crapshoot, but it's a fairly safe one. It might help but it probably won't hurt. I had acupuncture during my treatment for 3 different cancers. It helped  some with side effects of treatment and it definitely helped with stress reduction and relaxation, which helped with pain. For some other things, it didn't work but I'm pretty sure it didn't cause me any harm. 

Acupuncture works best if you can have it on a regular basis, two or three times a week.  A single treatment might be helpful, but less likely. 

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