Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Try researching Alpha-Lipoic Acid and Acetyl L-Carnitine. Both are suppose to help alleviate this condition. Good luck!

Liked by marystefy

@pkindron

Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.

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Maybe TS-HDS?
Study Description
Go to sections
Brief Summary:
The objective of this study is to develop a rationale for the selective treatment of small fiber neuropathy with immune globulin (IVIG) in the appropriate patients.
The investigators hypothesize that individuals with auto-antibodies targeting neuronal antigens (TS-HDS and FGFR3) and confirmed evidence of small fiber neuropathy (by skin biopsy analysis of intra-epidermal nerve fiber density) will have an improvement in both nerve fiber density and pain after treatment with immune globulin.
The co-primary endpoints will be a change in neuropathic pain (by VAS pain score) and a change in intra-epidermal nerve fiber density (by punch skin biopsy).
The data gained from this pilot study will establish a rationale, with an appropriate screening test, for the use of immune globulin for the treatment of small fiber neuropathy.

Condition or disease Intervention/treatment Phase
Small Fiber Neuropathy
Idiopathic Peripheral Neuropathy
Drug: Intravenous immunoglobulin
Drug: 0.9% Sodium Chloride
Phase 2

Detailed Description:
Small fiber neuropathies, and mixed small and large fiber neuropathies, have many potential causes including diabetes, vitamin deficiencies, environmental and toxic exposures, HIV, autoimmune and paraproteinemias.
However, despite this broad differential at least 30% of cases of small fiber neuropathies remain idiopathic. There is therefore a growing interest in the potential for using IVIG in small fiber neuropathy without direct proof that the disorder is caused by immune reactions. We have recently uncovered two novel autoantibodies, TS-HDS and FGFR-3, that are targeted again peripheral neural structure. TS-HDS is a disaccharide component of glycosylation of heparin and heparin sulfate.
Patients with elevated levels of IgM against TS-HDS display clear small fiber loss with IgM deposits around the outside of medium- & larger-sized capillaries with C5b-9 complement deposits. FGFR-3 is a secreted cell surface receptor; genetic defects of FGFR-3 are linked to achrondroplasia and other bony abnormalities.
The antibodies to TS-HDS and FGFR-3 are detected in up to 20% of patients with otherwise idiopathic small fiber neuropathy, but are rare in patients without small fiber neuropathy.
Dr. Levine (a co-investigator on this project) recently presented 3 cases of small fiber associated with elevated levels of auto-antibodies to TS-HDS or FGFR-3 who were treated with IVIG at 2 gm/kg/month for 6 months. He examined skin biopsies for intra-epidermal nerve fiber density and patient self-reported pain scores at baseline and after six months of therapy. All 3 cases showed marked improvement in pain scores. The average reduction in pain was 54%. In addition there was a clear increase in the intra-epidermal nerve fiber density (IENFD) after 6 months of therapy. Pre-treatment IENFD was 1.6, 1.7, and 2.4 at the calf. After 6 months of therapy the IENFD was 8.4, 5.7, 3.3 respectively (these are clinically significant improvement in nerve fiber density.
The investigators believe these anecdotal cases suggest that TS-HDS and FGFR-3 antibodies may be a marker for a group of SFN patients that are immune mediated and may respond to IVIG. (This case series was presented as a poster at the American Academy of Neurology meeting in 2017)

@pkindron

Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.

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New to this website and trying to catch up on all of the good information here. Is there a test TS-HDS and FGFR-3 antibodies?

Aware that Dr. Oaklander from Mass General Hospital in association with some other doctors is doing a double blind study with idiopathic patients with small fiber neuropathy. I think that they should be looking for volunteers soon. This study follows the study that came out this year showing IVIG helps 70%+ of people with small fiber neuropathy with no positive inflammatory or autoimmune markers.

@pkindron

Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.

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Hi @articmark — I think the test for the TS-HDS and FGFR3 is a Neuromuscular laboratory sensory panel. It's listed in this Neurology.org doc – A comparison of different laboratory and clinical findings in Small fiber neuropathy (SFN) (P1.456) here:
http://n.neurology.org/content/90/15_Supplement/P1.456

John

@allisonsnow

another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy

Thanks to anyone here that can help me !

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Yes I've had physical therapy seen chiropractor s.

@allisonsnow

another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy

Thanks to anyone here that can help me !

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Sounds like we have been thru alot of the same symptons and misdiagnosed illnesses. I too have requested a Mayo visit. Pls stay in touch I thought I was the only one and life would never be the same as I get older it gets worse.

Oh God. Reading some of your stories are heartbreaking. I won’t even try to explain what I’m going through because you guys had done it better. I can only say that my soul is filled with grief and sadness for it is not fair people with this excruciating and invisible disease to suffer so much and agonize 24/7 without a treatment that can stop and alleviate this ordeal. Please, any doctors out there, ~nerve pain is the worst pain someone can go through, and most of us have in the most sensitive areas of the body,(nose, ears, neck, chest, esophagus, hands, feet, etc )~, we kindly ask the researchers to consider neurophaty their next approach and develop better treatments for suffers like us .
Thank you for caring !!
Marinelastef

@marinelastef

Oh God. Reading some of your stories are heartbreaking. I won’t even try to explain what I’m going through because you guys had done it better. I can only say that my soul is filled with grief and sadness for it is not fair people with this excruciating and invisible disease to suffer so much and agonize 24/7 without a treatment that can stop and alleviate this ordeal. Please, any doctors out there, ~nerve pain is the worst pain someone can go through, and most of us have in the most sensitive areas of the body,(nose, ears, neck, chest, esophagus, hands, feet, etc )~, we kindly ask the researchers to consider neurophaty their next approach and develop better treatments for suffers like us .
Thank you for caring !!
Marinelastef

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Once we have doctors or their family members experience damage to the central nervous system (CNS) then there could be better treatments. The symptoms are never the same so they are hard to diagnose. One medication will help one person and not another. The medication may be the right one just not the dosage. We need more doctors who like solving problems, not just passing out pills. We are our own best advocate. Good luck.

mlmcg

@marinelastef

Oh God. Reading some of your stories are heartbreaking. I won’t even try to explain what I’m going through because you guys had done it better. I can only say that my soul is filled with grief and sadness for it is not fair people with this excruciating and invisible disease to suffer so much and agonize 24/7 without a treatment that can stop and alleviate this ordeal. Please, any doctors out there, ~nerve pain is the worst pain someone can go through, and most of us have in the most sensitive areas of the body,(nose, ears, neck, chest, esophagus, hands, feet, etc )~, we kindly ask the researchers to consider neurophaty their next approach and develop better treatments for suffers like us .
Thank you for caring !!
Marinelastef

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Yes, agree. We need big time help from doctors, and more investigations than just throwing pills that make you sicker .

@johnbishop

Hello @allisonsnow, I have small fiber peripheral neuropathy with numbness but no pain. I used to often get bad leg cramps because I wasn't drinking enough water and keeping hydrated. Dehydration is one of the things that can cause muscle cramps.

https://www.mayoclinic.org/symptoms/night-leg-cramps/basics/causes/sym-20050813

There is also a discussion in the Cancer Group – "Does anyone have a treatment for Neuropathy due to chemo" that you might want to read through here:
https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

Are you finished chemo now?

I’m also tagging @martid @jerrybecker @philippe who have also talked about managing chemo-related neuropathy here on Connect. I hope they will share their thoughts and experiences with you.

John

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Yes I try to stay aware of being hydrated I am finished with chemo for now… don't want to sound negative but we quit it half way thru because it was not working. On top of that, my last 3 mouth scan, showed some nodes at the head of my pancreas I go back 21st-22nd for MRIs and consult. It is never just one thing is it lol

@johnbishop

Hello @allisonsnow, I have small fiber peripheral neuropathy with numbness but no pain. I used to often get bad leg cramps because I wasn't drinking enough water and keeping hydrated. Dehydration is one of the things that can cause muscle cramps.

https://www.mayoclinic.org/symptoms/night-leg-cramps/basics/causes/sym-20050813

There is also a discussion in the Cancer Group – "Does anyone have a treatment for Neuropathy due to chemo" that you might want to read through here:
https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

Are you finished chemo now?

I’m also tagging @martid @jerrybecker @philippe who have also talked about managing chemo-related neuropathy here on Connect. I hope they will share their thoughts and experiences with you.

John

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Sorry to hear the chemo didn't work. Hopefully they can come up with a new treatment plan when you have your consult.

@johnbishop

Hello @allisonsnow, I have small fiber peripheral neuropathy with numbness but no pain. I used to often get bad leg cramps because I wasn't drinking enough water and keeping hydrated. Dehydration is one of the things that can cause muscle cramps.

https://www.mayoclinic.org/symptoms/night-leg-cramps/basics/causes/sym-20050813

There is also a discussion in the Cancer Group – "Does anyone have a treatment for Neuropathy due to chemo" that you might want to read through here:
https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

Are you finished chemo now?

I’m also tagging @martid @jerrybecker @philippe who have also talked about managing chemo-related neuropathy here on Connect. I hope they will share their thoughts and experiences with you.

John

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@allisonsnow Hello Allison

I am sorry to hear of the new nodes. I pray that they will find just the right med for you. Are you a candidate for immunotherapy?

Teresa

Thank you John for your well wishes this will be the first time away from my lungs ! so that is good news !!!! I have some growth around my lungs but they didn't seem as concerned about those growths . Another good news is (????) is that looks like a new pathology?! is that it seems to be a new pathology so our cancer insurance will kick in after dealing with that once I know to keep every receipt.

It is kind of like Aflac They pay your bills but you fight for every penny. before anyone asks it is from work and he has worked there for 47 I don't know if they at 50 years he gets a new F150 if they don't change that too

Also I don't think the nerves get any better the more times you are wait. I actually remember asking someone that once. I can tel you the spelling gets worse! I am doing laundry, cleaning dusting , ,baby sat last night anything and everything to stay busy, working in my garden…works best for me because that brings me closer to God ……oh forgot……eating chocolate LOL

The thing that helps the least is people saying "it may be nothing" AAUUGG!!!!!!! I already know that!! but they are doing the best they can ..
Our friends love us and do the best they can that is why this is a good place we talk to people that know and feel it in their heart.

@allisonsnow

Thank you John for your well wishes this will be the first time away from my lungs ! so that is good news !!!! I have some growth around my lungs but they didn't seem as concerned about those growths . Another good news is (????) is that looks like a new pathology?! is that it seems to be a new pathology so our cancer insurance will kick in after dealing with that once I know to keep every receipt.

It is kind of like Aflac They pay your bills but you fight for every penny. before anyone asks it is from work and he has worked there for 47 I don't know if they at 50 years he gets a new F150 if they don't change that too

Also I don't think the nerves get any better the more times you are wait. I actually remember asking someone that once. I can tel you the spelling gets worse! I am doing laundry, cleaning dusting , ,baby sat last night anything and everything to stay busy, working in my garden…works best for me because that brings me closer to God ……oh forgot……eating chocolate LOL

The thing that helps the least is people saying "it may be nothing" AAUUGG!!!!!!! I already know that!! but they are doing the best they can ..
Our friends love us and do the best they can that is why this is a good place we talk to people that know and feel it in their heart.

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Hello .. just read your last note,I agree with the garden and the god bit.
Serotonin in soil is best ever natural remedy for most things.
Gratitude is next. Good wishes for you . Prudence

sorry my mind was all over the place with the last note. I was in a hurry and had to end it quickly.. But yes am going in for more tests to determine if the cancer is back and if it is back is it a different cancer than last time. My cancer insurance will not pay anything if it a repeat of the same cancer. So I am in a strange position……if it is cancer, I am hoping for a new pathology? I think?? for two reasons .1) if new cancer I get paid by my regular cancer and get to use the new cancer insurance 2)they have no more proven treatments for Thymoma/Thymic. So maybe future might be brighter on the other side of the fence hahahahahahahahahaha you know that old saying, AND there is always the chance it is a benign nodule and is really nothing at all. I have had my share of false positives AND I ALWAYS HAVE HOPE AND GOD AND MY GARDEN

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