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Illusive Diagnosis, Pain Increasing
I visited Mayo in Rochester this past Fall and was diagnosed with small and large fiber peripheral neuropathy. However, the neurologist said what I am experiencing could not all be explained by that diagnosis. He felt there was a skeletal muscular component, as well. The doctor who took me into the clinic felt I could find the answers at home and no longer needed Mayo. I have since gotten some additional diagnosis. The foot and ankle doc did some tapping and mentioned tarsal tunnel syndrome. He later said it is not ordinary TTS as my symptoms are more widespread. He also suspects there may be some mild CRPS in the left foot (everything is worse on the left than the right). He put me in an ankle brace until we can learn more and the brace has been very effective. It has confirmed my suspicion that ankle movement triggers many of my foot symptoms. In the meantime, I am noticing increasing pain in my other joints. My shoulder pain is uncomfortable enough that I have an appt to see my GP tomorrow to make sure I didn't knock it partway out of its socket. I spent last year going from doctor to doctor, feeling like I am crazy. Now that I am finally starting to put together pieces of the puzzle I am nervous about adding more symptoms/information to the list of my complaints. I am worried that I will be seen as attention seeking or a hypochondriac We know there is odd nerve stuff going on but with the increased joint pain, I feel there is more to the story. The phrase muscular skeletal is thrown around often but no official diagnosis . . . yet. Anyone else dealing with an overlap of neurological and muscular skeletal issues? I am not looking to replace my doctors. Just want to feel less "crazy".
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I can relate to feeling like a hypochondriac. I have never had so much bloodwork and imaging tests in my whole life. No one seems to want to help me solve the puzzle of what is causing my peripheral neuropathy, but they are willing to dispense drugs. I am glad there are drugs that help me, but I really want to know why I have this, and possibly slow down the progression. Doctors look at their own tiny piece.
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2 ReactionsJan, I'm sorry that you feel "No one seems to want to help me solve the puzzle of what is causing my peripheral neuropathy," The truth of the matter is that often there is no known cause. Once they rule out the obvious - diabetes and a few other diseases, pinched nerves, etc - there really isn't much more medicine can do at this point.
Perhaps, if you are near a large research hospital, you can find someone who is researching the causes of neuropathy and become part of a study.
And in truth, it is not only neuropathy. I have a progressive lung disease known as bronchiectasis and doctors can theorize about what caused it - undertreated asthma, exposure to bad stuff in the air, repeated pneumonia and lung infections - but we will never know for sure. In the end, it doesn't matter, because it just needs to be treated and managed to make my breathing and my life the best possible. The same is true of many cancers and other diseases.
Someday the genetic and environmental puzzles may be completely solved, and research into these is constant, but in the meantime we treat the symptoms. Have you read what Mayo Clinic says about neuropathy?
https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061
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4 ReactionsYour history is quite interesting and a lot of puzzle pieces might fit. I would bet you had mono in 1998. That can result in chronic viral activity (chronic EBV infection) which is often associated with chronic fatigue syndrome. It can be diagnosed by an EBV panel (serum test) but must include early antigen antibodies or will not tell you if there’s chronic viral activity. That would explain why you have never felt normal since. Then you have had some autoimmune diagnoses and those typically don’t just disappear but they can go into remission then reappear later. Autoimmune disorders are associated with peripheral neuropathy, so is diabetes, plus your family history of PN. The joint pains could be a resurgence of the AI disease so a rheumatologist should repeat all your AI antibodies and related tests now. There are neuromuscular specialists who can assess the neuro skeletal muscle connections and you should inquire about CIDP, an uncommon condition that involves PN and muscle weakness. It is progressive, debilitating but treatable so early diagnosis and treatment is essential. Try to find a neuromuscular specialist at your university hospital clinic. I
I have chronic EBV, lupus, RA, PN and CIDP. I have been down this same road and spent decades being told I had fibromyalgia .Fibro doesn’t put people in wheelchairs but CIDP can if not identified early. I urge you to pursue this and don’t let anyone dismiss your symptoms. Go armed with information and be assertive after researching these ideas on your own. A rheumatologist and neuromuscular specialist should have this figured out pretty quickly. Let us know what transpires please!
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