1. < Neuropathy

Is there a way to test neuropathy w/o sticking needles in your veins?

Posted by librarymom1 @librarymom1, Jun 7, 2023

I have neuropathy from Hansen’s Disease (leprosy). It was actually the first symptom for 18 months until others started manifesting in my joints which led to diagnosis.
My dermatologist found it and after 13 months of 2 different antibiotics daily, I was cured, only the neuropathy remained. I pass out before they get very far with the needles, so have not received any treatment and as I age it is moving further up from my feet to ankles.

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Mafalda | @mafalda | Jun 11, 2023

I really hope you can find a way to get the EMG done without pain. I had it for 5 times, all of them very painful, and I gave birth all natural...but I'm so over it, never again! The last time I told the Dr. that, would the test had been performed at a Police Station instead of the Hospital, I would have confessed of any crime just to have him stopped!

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2 replies
librarymom1 | @librarymom1 | Jun 11, 2023
In reply to @delia74 "I so concur that the testing is painful! I wrote a long reply earlier in this..." + (show)
@delia74

I so concur that the testing is painful! I wrote a long reply earlier in this conversation feed regarding my experiences with 3 of the nerve and muscle studies. At this point in my life (I'm 74) I would not agree to having another done, exception being that there is a huge underlying reason for doing so. I gave birth with no medications three times, so I would say that in my 20's my pain threshold was pretty significant. NOT NOW, especially with fibromyalgia (over 30 years) and diagnosed central nervous system issues.

May I suggest that you inquire if perhaps anything can be given to "take the edge off" the pain, without it interfering with accuracy of readings? I know that the last test I had in 2021, there was no offer of anything to help me out. When it was over, I was spent on so many levels...

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That was how I thought. I didn’t want to go through it unless necessary to live. I too gave birth to 3 children without any medication(just a lot of heavy breathing). My only worry is that it might one day make it difficult to walk and it would be something I could have prevented.
But right now I am recovering from a mastectomy, so my neuropathy is on the back burner.
Thank you everyone for the advise and care!

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2 replies
rosaliemarie | @rosaliemarie | Jun 11, 2023
In reply to @rosaliemarie "I wish I could say that the EMG I had was painless. I have a very..." + (show)
@rosaliemarie

I wish I could say that the EMG I had was painless. I have a very high tolerance for pain and, yet, the EMG I had at Mayo a couple of years ago, was probably the most painful test I have ever experienced. I am scheduled for another one and am not looking forward to it.

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Thank you so much for your information. I will ask if there is something they can add to the procedure to alleviate the pain. I have venous insufficiency that I am having corrected in July. It could be that is where some of the discomfort is coming from because my legs hurt all the time. I am going to wait until I have that procedure before i go for the EEG.

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1 reply
rosaliemarie | @rosaliemarie | Jun 11, 2023
In reply to @librarymom1 "That was how I thought. I didn’t want to go through it unless necessary to live...." + (show)
@librarymom1

That was how I thought. I didn’t want to go through it unless necessary to live. I too gave birth to 3 children without any medication(just a lot of heavy breathing). My only worry is that it might one day make it difficult to walk and it would be something I could have prevented.
But right now I am recovering from a mastectomy, so my neuropathy is on the back burner.
Thank you everyone for the advise and care!

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Thanks for the hug! It’s always nice to know there is someone out there that understands what it is all about.

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rosaliemarie | @rosaliemarie | Jun 11, 2023
In reply to @librarymom1 "That was how I thought. I didn’t want to go through it unless necessary to live...." + (show)
@librarymom1

That was how I thought. I didn’t want to go through it unless necessary to live. I too gave birth to 3 children without any medication(just a lot of heavy breathing). My only worry is that it might one day make it difficult to walk and it would be something I could have prevented.
But right now I am recovering from a mastectomy, so my neuropathy is on the back burner.
Thank you everyone for the advise and care!

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I should add that I am a 33 year survivor of intra ductal breast cancer that was found very early. Now, with all the new technology, I pray you will be well…

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rosaliemarie | @rosaliemarie | Jun 11, 2023
In reply to @mafalda "I really hope you can find a way to get the EMG done without pain. I..." + (show)
@mafalda

I really hope you can find a way to get the EMG done without pain. I had it for 5 times, all of them very painful, and I gave birth all natural...but I'm so over it, never again! The last time I told the Dr. that, would the test had been performed at a Police Station instead of the Hospital, I would have confessed of any crime just to have him stopped!

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That is funny, but not funny, if you know what I mean…. I’ll keep you all posted…

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cher27 | @cher27 | Jun 12, 2023
In reply to @rosaliemarie "Thank you so much for your information. I will ask if there is something they can..." + (show)
@rosaliemarie

Thank you so much for your information. I will ask if there is something they can add to the procedure to alleviate the pain. I have venous insufficiency that I am having corrected in July. It could be that is where some of the discomfort is coming from because my legs hurt all the time. I am going to wait until I have that procedure before i go for the EEG.

Jump to this post

PLEASE, go over the waiver carefully BEFORE vein ablation & ask your provider, specifically, if it could negatively effect your neuropathy. TELL them what drugs you take for neuropathy & don't rely on them to read your medical history. Mine got MUCH worse after the procedure & the numbness & other issues can last for YEARS, not the 7-10 days they told me up front. Evidently, the cannula can hit nerves during the procedure. I consulted my vascular doctor because my feet were turning bright red & I thought it was blood pooling. After 18 months, the redness is worse, has spread to my ankles & the doctor is clueless, shrugs his shoulders & tells me to come back in 6 months (so he can collect another Medicare payment). I had plenty of pain in my feet prior to the ablation, but no numbness. Now my feet & lower legs are numb, as well as painful. I still have achy legs as well. Not saying you shouldn't have the procedure, just be cautious & aware of all the possible down sides. Maybe get a second opinion, since you still have time. The sad part of my experience is, I had just started Gabapentin 2 months prior to the ablation and it provided so much relief, I thought it was a miracle. After 7 years of misery, I finally found something that helped my suffering. Then I had the vein ablation & to my regret, it all came back with a vengeance. I wish you all the best.

REPLY
1 reply
rosaliemarie | @rosaliemarie | Jun 12, 2023
In reply to @cher27 "PLEASE, go over the waiver carefully BEFORE vein ablation & ask your provider, specifically, if it..." + (show)
@cher27

PLEASE, go over the waiver carefully BEFORE vein ablation & ask your provider, specifically, if it could negatively effect your neuropathy. TELL them what drugs you take for neuropathy & don't rely on them to read your medical history. Mine got MUCH worse after the procedure & the numbness & other issues can last for YEARS, not the 7-10 days they told me up front. Evidently, the cannula can hit nerves during the procedure. I consulted my vascular doctor because my feet were turning bright red & I thought it was blood pooling. After 18 months, the redness is worse, has spread to my ankles & the doctor is clueless, shrugs his shoulders & tells me to come back in 6 months (so he can collect another Medicare payment). I had plenty of pain in my feet prior to the ablation, but no numbness. Now my feet & lower legs are numb, as well as painful. I still have achy legs as well. Not saying you shouldn't have the procedure, just be cautious & aware of all the possible down sides. Maybe get a second opinion, since you still have time. The sad part of my experience is, I had just started Gabapentin 2 months prior to the ablation and it provided so much relief, I thought it was a miracle. After 7 years of misery, I finally found something that helped my suffering. Then I had the vein ablation & to my regret, it all came back with a vengeance. I wish you all the best.

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Oh my, so sorry this is happening to you. Thanks you for the heads up. I already have numbness in my feet and lower leg above the ankle, I would hate to think it is going to get worse. I don’t take any meds for the neuropathy. I tried gabapentin and Lyrica and didn’t tolerate them well. I do my best to move a lot each day and notice when I don’t the pain increases. I did discuss the neuropathy with him and there is no specific answer because, truth be told, who knows!! It is a catch-22 isn’t it? The PA at Mayo suggested I get this done because I have swelling at the knees from the venous insufficiency. Darn’ed if you do and darned if you don’t! I’ll keep you posted!!

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sallypatama | @sallypatama | Jun 13, 2023
In reply to @mafalda "I really hope you can find a way to get the EMG done without pain. I..." + (show)
@mafalda

I really hope you can find a way to get the EMG done without pain. I had it for 5 times, all of them very painful, and I gave birth all natural...but I'm so over it, never again! The last time I told the Dr. that, would the test had been performed at a Police Station instead of the Hospital, I would have confessed of any crime just to have him stopped!

Jump to this post

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REPLY
Mshutch | @mshutch | Jun 14, 2023
In reply to @rosaliemarie "I wish I could say that the EMG I had was painless. I have a very..." + (show)
@rosaliemarie

I wish I could say that the EMG I had was painless. I have a very high tolerance for pain and, yet, the EMG I had at Mayo a couple of years ago, was probably the most painful test I have ever experienced. I am scheduled for another one and am not looking forward to it.

Jump to this post

I have to agree with you Rosaliemarie. The first few EMG's I had were painful. Not just uncomfortable. The last one I had, I am pretty sure it was the Fellow's first time as it was excruciating. I taught myself to disassociate during that test.
I think that EMG's vary by person. I am curious if the people who did not experience pain had a negative test. I was told my results only showed mild impairment which surprized me.

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