Hopefully he will see your post if he is still following Connect. If you view his profile by clicking on the member name, it shows he was last active on Connect on March 21st but has not posted since 2019, so he may not be receiving email notifications or has turned them off.
I also have inherited/idiopathic peripheral neuropathy. I have had symptoms that have progressed for decades which I had no idea were PN for decades, like being able to walk on snow, hold hot things and to sweat excessively. More recently my feet have become painfully numb, with tingling and hot burning glass being common states. The a little over a year ago my hands became painfully numb, the teeth on my lower right jaw began to go numb and I began loosing hearing in the low tone in my right ear. In 8 months I lost 60% of the hearing of low tones. Unfortunately, old age deafness is the high tones and that is what hearing aids are made for. For low tone deafness, the only device is a microphone that I give to the person I am talking to. I have another hearing test in a couple months and I'm sure I will have lost more hearing.
Getting a good doctor is hard but there are some out there. Dr. Oaklander at MGH does 1/2 research 1/2 patients and hasn't been accepting new patients when I have inquired. However, she is looking at the use of IVIG for people with idiopathic PE and no positive results for the standard autoimmune or inflammatory tests. My neurologist at MGH, Reza Seyedsadjadi is great at working with me to figure out what is going on, being thorough in his testing and making sure that all available tests are used.
I also highly recommend the pain clinic at Newton Wellesley Hospital, they checked my meds, adjusted them and then tweaked them for the most current pain relief mechanism.
I have also seen neurologists at Mayo clinic and Brigham and Women's Hospital who were excellent and tested everything that MGH had missed. However, the wait times to get in can be crazy so I am not advocating that you see them, I waited 14 months to see an autonomic PE expert at the Brigham, that is not reasonable.
Good luck in your search I would love to stay in touch!
Im just getting in w mass general now ..after 8 yrs of horrendous medical negligence im hopeful to see a real dr who doesnt shrug n dismiss me ..i am traveling from ny to go there
Is MGH stand for mass general hospital.?sounds
like a good dr if she is willing to stick with you and try to help . All my guys just keep sending me on to Neurosurgeon who think both hand and feet probably coming from stenosis, but will not believe any of them so of course they pass me.on.My neurologist sent me to them. Going to Hopkins in sept but that is huge institution so not looking forward to that . Talk about who could care less . I was just hoping they had better medical devices an test to help me figure if this is small fiber nueropathy.
Hello , to @arcticmark, the only tests I know of is skin punch biopsy. Fr some reason no neurologist wants to do it. I’m calling my insurance co. To final ANYONE who I can see( maybe 3 hours north).
Best of luck n prayers to you. My PN is horrible n plays of my spine stenosis 🙁.
I hope u have someone who gives you joy because it helps so much.
I want to thank all of you for your input/advise, I am going to make an appointment, I hope they will confirm because I went to Neuropathy clinic before and even had an EMG done.
I’ve got spinal OA, stenosis, s/p L-S spine fusion 1990 with chronic PN bilaterally. At 69 no longer a candidate or want repeat fusion surgery. I just discovered a better mix of CBD/THC and I’ve decreased my PRN oxycodone to 2x day a d headed for one. I’ll still need buprenorphine patch but less narcogesic meds is a win in my eyes.
I’ve got spinal OA, stenosis, s/p L-S spine fusion 1990 with chronic PN bilaterally. At 69 no longer a candidate or want repeat fusion surgery. I just discovered a better mix of CBD/THC and I’ve decreased my PRN oxycodone to 2x day a d headed for one. I’ll still need buprenorphine patch but less narcogesic meds is a win in my eyes.
Can you tell me what your mix of CBD/THC is? I have all the toasted bud here I will ever need (White Widow)and I have CBD drops. I'm trying to regenerate the nerves in my feet that got damaged from Taxol that I took during my breast cancer treatment. I'm also using VitD3 and K2, plus alpha lipoic acid that the chemo team suggested .I'm 79 and have i legal marijuana in pots in my back yard here in California..It's fun to watch it grow next to my tomatoes. Thanks for your interesting comments.
Here in Pennsylvania where it is still not legal except for mmj but we cannot grow our own either. Great you have plants now you just need to process them. There is material you can buy to process the whole plant, aka full spectrum but know how to grow a plant that is lower in THC and higher in CBD. I purchased 1000mg RSO and have made that into capsules and I take it 3x day, In the morning I take Ilera Healthcare Ease Tincture CBD:THC (10:1). At bedtime I take Ilera Healthcare Hope 2 Tincture CBD:THC (1:5) and anyone's make of THC Tincture >1.75%. Throughout the day I Vape CBD dominant oil to supplement my CBD levels. I no longer get buzzed from THC and I sleep like a baby.
Here in Pennsylvania where it is still not legal except for mmj but we cannot grow our own either. Great you have plants now you just need to process them. There is material you can buy to process the whole plant, aka full spectrum but know how to grow a plant that is lower in THC and higher in CBD. I purchased 1000mg RSO and have made that into capsules and I take it 3x day, In the morning I take Ilera Healthcare Ease Tincture CBD:THC (10:1). At bedtime I take Ilera Healthcare Hope 2 Tincture CBD:THC (1:5) and anyone's make of THC Tincture >1.75%. Throughout the day I Vape CBD dominant oil to supplement my CBD levels. I no longer get buzzed from THC and I sleep like a baby.
@jenatsky What a wonderful idea you have revealed to me. I have never thought to supplement my CBD throughout the day. I do not vape. I use tinctures and can easily arrange a supplement dose. I do use rich THC along with CBD in the morning as my "get up and go" dose and rich CBD in the evening. Thank you for sharing your experiences with me.
I've always considered micro dosing as the way to go on many levels. I even had a visit with an ENT to have my throat checked out for damage due to vaping and I'm just fine. I've found that full spectrum works the best and more producers are making high CBD with THC or combo's with both to pick from.
Here in Pennsylvania where it is still not legal except for mmj but we cannot grow our own either. Great you have plants now you just need to process them. There is material you can buy to process the whole plant, aka full spectrum but know how to grow a plant that is lower in THC and higher in CBD. I purchased 1000mg RSO and have made that into capsules and I take it 3x day, In the morning I take Ilera Healthcare Ease Tincture CBD:THC (10:1). At bedtime I take Ilera Healthcare Hope 2 Tincture CBD:THC (1:5) and anyone's make of THC Tincture >1.75%. Throughout the day I Vape CBD dominant oil to supplement my CBD levels. I no longer get buzzed from THC and I sleep like a baby.
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Hopefully he will see your post if he is still following Connect. If you view his profile by clicking on the member name, it shows he was last active on Connect on March 21st but has not posted since 2019, so he may not be receiving email notifications or has turned them off.
You might read through some of the member stories in this discussion to see if someone shares your symptoms and learn what has helped them - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
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1 ReactionIm just getting in w mass general now ..after 8 yrs of horrendous medical negligence im hopeful to see a real dr who doesnt shrug n dismiss me ..i am traveling from ny to go there
Small fiber neuropathy only needs a punch biopsy to dx ?any dr can get you that testing
Did u get your sfn punch ?any dr can do it your primary can send u to a general surgeon if need be its such i quick easy procedure ..
I’ve got spinal OA, stenosis, s/p L-S spine fusion 1990 with chronic PN bilaterally. At 69 no longer a candidate or want repeat fusion surgery. I just discovered a better mix of CBD/THC and I’ve decreased my PRN oxycodone to 2x day a d headed for one. I’ll still need buprenorphine patch but less narcogesic meds is a win in my eyes.
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Like -
Helpful -
Hug
1 ReactionCan you tell me what your mix of CBD/THC is? I have all the toasted bud here I will ever need (White Widow)and I have CBD drops. I'm trying to regenerate the nerves in my feet that got damaged from Taxol that I took during my breast cancer treatment. I'm also using VitD3 and K2, plus alpha lipoic acid that the chemo team suggested .I'm 79 and have i legal marijuana in pots in my back yard here in California..It's fun to watch it grow next to my tomatoes. Thanks for your interesting comments.
Here in Pennsylvania where it is still not legal except for mmj but we cannot grow our own either. Great you have plants now you just need to process them. There is material you can buy to process the whole plant, aka full spectrum but know how to grow a plant that is lower in THC and higher in CBD. I purchased 1000mg RSO and have made that into capsules and I take it 3x day, In the morning I take Ilera Healthcare Ease Tincture CBD:THC (10:1). At bedtime I take Ilera Healthcare Hope 2 Tincture CBD:THC (1:5) and anyone's make of THC Tincture >1.75%. Throughout the day I Vape CBD dominant oil to supplement my CBD levels. I no longer get buzzed from THC and I sleep like a baby.
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Like -
Helpful -
Hug
1 Reaction@jenatsky What a wonderful idea you have revealed to me. I have never thought to supplement my CBD throughout the day. I do not vape. I use tinctures and can easily arrange a supplement dose. I do use rich THC along with CBD in the morning as my "get up and go" dose and rich CBD in the evening. Thank you for sharing your experiences with me.
May you be content and at ease.
Chris
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1 ReactionI've always considered micro dosing as the way to go on many levels. I even had a visit with an ENT to have my throat checked out for damage due to vaping and I'm just fine. I've found that full spectrum works the best and more producers are making high CBD with THC or combo's with both to pick from.
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Helpful -
Hug
1 ReactionWow, I have to figure this all out. Thanks for the information.