Illusive Diagnosis, Pain Increasing

Posted by jeanniem @jeanniem, Feb 17 7:23pm

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”.

@jeanniem Welcome to Mayo Clinic Connect, a place to give and get support. You have been diagnosed with small and large fiber neuropathy that has a skeletal muscular component. You are looking to connect with members for support and information.

Below I have linked a couple discussions you may find helpful and I have tagged helpful members in those discussions.

Members from neuropathy group @kp6350 @helennicola @bkelley5 @lorirenee1 @summertime4
– Tarsal tunnel syndrome https://connect.mayoclinic.org/discussion/tarsal-tunnel-syndrome/

Members from Chronic Pain @faithwalker007 @londonwc1 @nlong53 @smallengineguy @sunnyflower
– Want to talk with others. Have you found relief from CRPS? https://connect.mayoclinic.org/discussion/crps-2/

You will also notice that I added this question to those groups as well.

It doesn't sound to me like you would be viewed as a hypochondriac. May I ask if you received any feedback that has lead you to fear this perception?

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@erikas

@jeanniem Welcome to Mayo Clinic Connect, a place to give and get support. You have been diagnosed with small and large fiber neuropathy that has a skeletal muscular component. You are looking to connect with members for support and information.

Below I have linked a couple discussions you may find helpful and I have tagged helpful members in those discussions.

Members from neuropathy group @kp6350 @helennicola @bkelley5 @lorirenee1 @summertime4
– Tarsal tunnel syndrome https://connect.mayoclinic.org/discussion/tarsal-tunnel-syndrome/

Members from Chronic Pain @faithwalker007 @londonwc1 @nlong53 @smallengineguy @sunnyflower
– Want to talk with others. Have you found relief from CRPS? https://connect.mayoclinic.org/discussion/crps-2/

You will also notice that I added this question to those groups as well.

It doesn't sound to me like you would be viewed as a hypochondriac. May I ask if you received any feedback that has lead you to fear this perception?

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Jeanniem, erika, I am afraid I won’t be of much help here as I’ve been diagnosed with bi-lateral carpal tunnel for which I wear wrist braces at night. I believe both can be associated with neuropathy. I don’t experience any other muscular/ skeletal issues. I do hope you have success in getting to the cause of your pain soon and are able to alleviate it. Not knowing is frustrating. Helen

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Thank you, Erika. I have received some unhelpful feedback. My first neurologist did an EMG. There were abnormalities on both sides but she chalked it up to a technical issue and said everything was fine. She also told me my MRIs were fine and there was nothing more she could do for me. I went through 2 podiatrists and 2 general practitioners who told me I just needed to wear inserts and take ibuprofen. I had a GP ask me, "Would it really be that bad if this is somatic in nature?" After 3 years and numerous doctor visits, I found a podiatrist who really listened to me. He did an MRI of my foot and said something was going on. He got me into PT and, after being blown off by the 1st neurologist, pushed me to keep looking. I saw a spine doc who affirmed I have severe foraminal stenosis at the L5/S1. He originally acted like he would follow up with me but after reading the EMG said my issues are not connected to my back. His nurse went so far as to tell me not to contact them again unless I was actually having trouble with my back. I was so embarrassed! My super-hero podiatrist referred me on to Rheum and then to Pain Management. The rheumatologist was compassionate but said, since my blood tests were normal, there was nothing he could do for me. The pain doc did an injection and suggested I go to Mayo. At Mayo, they did another (3 hour) EMG and a nerve biopsy to show large and small fiber neuropathy. (I kind of wanted to shove those results in the face of that 1st neurologist who told me I was fine!) But even my experience at Mayo was mixed. The neurologist affirmed something was going on. The spine doc that brought me into the clinic blew me off saying I don't need further workup and I probably just need a brace or something. I have a new local neurologist who is kind and has not made me feel crazy. He sent me to a foot and ankle surgeon and I am working with the 2 of them to try and find the missing pieces. Of those docs who have proved helpful, every one of them have suggested there is a muscular skeletal problem making things worse. We just don't know what it is.

On a side note, I did see my GP today for the pain I am having around my shoulders. It looks like an old fashioned pinched nerve in the neck. Something common and ordinary, most likely. Nice to know!

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@helennicola

Jeanniem, erika, I am afraid I won’t be of much help here as I’ve been diagnosed with bi-lateral carpal tunnel for which I wear wrist braces at night. I believe both can be associated with neuropathy. I don’t experience any other muscular/ skeletal issues. I do hope you have success in getting to the cause of your pain soon and are able to alleviate it. Not knowing is frustrating. Helen

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Helen. I really appreciate your reply. From what I understand, carpal tunnel is very similar to tarsal tunnel – except in the arms/wrist instead of the leg/ankle. Interesting that you wear wrist braces at night. I am bracing my ankle during the day and have less symptoms when wearing it. I never contemplated wearing it at night. Not knowing is frustrating! Thank you, Helen, for taking the time to respond. 🙂 jeannie

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@jeanniem

Thank you, Erika. I have received some unhelpful feedback. My first neurologist did an EMG. There were abnormalities on both sides but she chalked it up to a technical issue and said everything was fine. She also told me my MRIs were fine and there was nothing more she could do for me. I went through 2 podiatrists and 2 general practitioners who told me I just needed to wear inserts and take ibuprofen. I had a GP ask me, "Would it really be that bad if this is somatic in nature?" After 3 years and numerous doctor visits, I found a podiatrist who really listened to me. He did an MRI of my foot and said something was going on. He got me into PT and, after being blown off by the 1st neurologist, pushed me to keep looking. I saw a spine doc who affirmed I have severe foraminal stenosis at the L5/S1. He originally acted like he would follow up with me but after reading the EMG said my issues are not connected to my back. His nurse went so far as to tell me not to contact them again unless I was actually having trouble with my back. I was so embarrassed! My super-hero podiatrist referred me on to Rheum and then to Pain Management. The rheumatologist was compassionate but said, since my blood tests were normal, there was nothing he could do for me. The pain doc did an injection and suggested I go to Mayo. At Mayo, they did another (3 hour) EMG and a nerve biopsy to show large and small fiber neuropathy. (I kind of wanted to shove those results in the face of that 1st neurologist who told me I was fine!) But even my experience at Mayo was mixed. The neurologist affirmed something was going on. The spine doc that brought me into the clinic blew me off saying I don't need further workup and I probably just need a brace or something. I have a new local neurologist who is kind and has not made me feel crazy. He sent me to a foot and ankle surgeon and I am working with the 2 of them to try and find the missing pieces. Of those docs who have proved helpful, every one of them have suggested there is a muscular skeletal problem making things worse. We just don't know what it is.

On a side note, I did see my GP today for the pain I am having around my shoulders. It looks like an old fashioned pinched nerve in the neck. Something common and ordinary, most likely. Nice to know!

Jump to this post

Hello Jeanniem, I am so sorry to hear what you have been going through! For your pain, journey to get diagnosed and relief, and how inappropriately you have been treated. I think you should let the docs who need to be shown, the error of their ways. Let them know the results of your diagnostics that identify what's wrong with you. And, that you were treated inappropriately and didn't deserve that. Hard to do but a good way to pay it forward on behalf of future patients and hopefully humble those who need to be.

Unfortunately your story is common. Good for you to keep being your own advocate and being so participatory as you team with those who hold the quality of your life in their hands.

I wish you all the possible best in every way.
Warmest wishes, Sunnyflower

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@jeanniem

Helen. I really appreciate your reply. From what I understand, carpal tunnel is very similar to tarsal tunnel – except in the arms/wrist instead of the leg/ankle. Interesting that you wear wrist braces at night. I am bracing my ankle during the day and have less symptoms when wearing it. I never contemplated wearing it at night. Not knowing is frustrating! Thank you, Helen, for taking the time to respond. 🙂 jeannie

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Jeannie, you’re very welcome! I do think they help me, maybe I should try wearing them during the day too! What is crazy is that I’ve read that exercising my hands/wrists also helps so that would seem the total opposite!🙄 I do both, and keep my fingers crossed (for exercise!) P.S. I was diagnosed with idiopathic SFN 3 yrs. ago and still wonder if my feet/hand issues are not a spine issue since I have degeneration/stenosis/scoliosis; my EMG’s were fine and no biopsy because my neuro felt she would treat me the same. (gabapentin) Since I would not consider any surgery and do P/T and exercise I’m ok with that for now. Helen

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@sunnyflower

Hello Jeanniem, I am so sorry to hear what you have been going through! For your pain, journey to get diagnosed and relief, and how inappropriately you have been treated. I think you should let the docs who need to be shown, the error of their ways. Let them know the results of your diagnostics that identify what's wrong with you. And, that you were treated inappropriately and didn't deserve that. Hard to do but a good way to pay it forward on behalf of future patients and hopefully humble those who need to be.

Unfortunately your story is common. Good for you to keep being your own advocate and being so participatory as you team with those who hold the quality of your life in their hands.

I wish you all the possible best in every way.
Warmest wishes, Sunnyflower

Jump to this post

Thanks for your feedback, Sunnyflower. It is unfortunate that my story is common but I appreciate the encouragement. 🙂

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@helennicola

Jeannie, you’re very welcome! I do think they help me, maybe I should try wearing them during the day too! What is crazy is that I’ve read that exercising my hands/wrists also helps so that would seem the total opposite!🙄 I do both, and keep my fingers crossed (for exercise!) P.S. I was diagnosed with idiopathic SFN 3 yrs. ago and still wonder if my feet/hand issues are not a spine issue since I have degeneration/stenosis/scoliosis; my EMG’s were fine and no biopsy because my neuro felt she would treat me the same. (gabapentin) Since I would not consider any surgery and do P/T and exercise I’m ok with that for now. Helen

Jump to this post

I have ankle exercises I do throughout the day and when in the pool to try and keep up range of motion. There may be more in the future. Since we don't know 100% what we are dealing with, my docs are holding off on a treatment plan for now. You may have read above that my 1st set of EMGs were considered normal or negative. The EMG at Mayo was much more extensive. It was painful, though. And it didn't dictate much in the way of treatment planning but rather gave me another piece to the puzzle. I have nothing to back this up and am not a physical health professional but I suspect there is a type of inflammation that happens in the spine and/or surrounding tissue that they have yet to identify in current blood work and imagining. But, as your doctor said, I don't know that would equal a solution. I am kind of okay with that, though. I have told my doctors that I am not interested in a bunch of drugs if I can avoid it. It really is just helpful for me to have "pockets" and vocabulary for what is happening in my body. It helps me in setting expectations, etc. Glad to hear the PT and exercise are working so well for you! (I love my PT guy!)

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In many ways I could have written your letter. Don't feel like a hypochondriac. We all, at times, feel like our body is going bonkers. Just tossing a thought out to you if fibromyalgia has been considered. There are some days that it feels like no matter where I touch I have pain, be it feet to head.

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Thanks for that, I haven't considered fibromyalgia. I will mention it when I see the dr. I appreciate the input, you never know for sure what they can do until you ask about it

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@suzanne2

In many ways I could have written your letter. Don't feel like a hypochondriac. We all, at times, feel like our body is going bonkers. Just tossing a thought out to you if fibromyalgia has been considered. There are some days that it feels like no matter where I touch I have pain, be it feet to head.

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Fibro has been mentioned. Rarely by someone who actually wanted to treat me for it, ironically. It was used as a brush off. I asked my neuro and pain doc about Fibro and they both told me my symptoms don't fit. It does run in my family so it may be a contributing factor.

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@jeanniem Sorry for butting in but I was diagnosed by a rheumatologist 30 yrs ago They are the ones you should see They do the pressure points which there are 18 to see if you have fibro. Most Dr,s tell you it's all in your head ,some are a little bit smarter now then when I was diagnosed .Good luck There are fibro flares with this at times when you don't know where you hurt the worst and nothing you take helps Fibro can be managed to a point but you have to find the right Dr ,a rheumatologist .Then we all have different tools to help us .

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