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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 18 hours ago | Replies (6371)

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@larsoncl101

Hi everyone, it’s nice to meet you all, I am new to this whole community. I have struggled with health issues for quite some time. Over the last couple of years it’s become almost unbearable. I developed multiple spontaneous bone fractures, including pelvis and almost every rib ( I have osteopenia) , I have PN, lymphedema, anemia, kidney disease, arterial blood clots, avascular nercrosis of my hips, severe fatigue that comes and gos, cauda equina syndrome with neurogenic bladder and bowel, and now elevated kappa light chain, lambda is normal ratio is high and nobody seems to have answers! I do not have any diagnosis that normally explains reason for these symptoms. I am not diabetic, obese or sedentary. I have seen so many doctors desperately seeking answers and I am basically told I am a unicorn (rare and unusual)! Seems as though when something gets fixed something else breaks. I have a counselor who has reassured me none of its in my head. I have had a few good doctors that have also reassured me yet still no answers. Is there anyone who recognizes these symptoms and could give me a direction to search. I am buried under a mountain of medical bills and tired of doctors repeating expensive tests because they don’t like where something was done or they don’t have it in their own computer systems. Thank you for reading and any direction.

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Replies to "Hi everyone, it’s nice to meet you all, I am new to this whole community. I..."

Hi @larsoncl101, Welcome to Connect. Sorry to hear you have so much on your plate. I know this has to be difficult for you to manage. I have PN, lymphedema in the legs (mostly my right one) and have had a few blood clots. I also have osteopenia but just in the watching mode now and trying to keep moving daily. While you wait for others to respond, I thought you might find it helpful to search Connect to locate related discussions that might be helpful based on some of your symptoms. Here are a few to get you started.

-- "cauda equina syndrome" - https://connect.mayoclinic.org/search/?search=cauda+equina+syndrome
-- "peripheral neuropathy what helps" - https://connect.mayoclinic.org/search/?search=peripheral+neuropathy+what+helps
-- "severe fatigue that comes and goes" - https://connect.mayoclinic.org/search/?search=severe+fatigue+that+comes+and+goes

You might also find the Foundation for Peripheral Neuropathy website helpful for complementary and alternative treatments and other information - https://www.foundationforpn.org/therapies/

Which symptom is the most difficult for you to manage?