I have been to many neurologists and cardiologists over the past 5 years in my home state, Hawaii, also in Washington State, California, and next will be in Arizona, trying to find a way to slow the progression of this peripheral neuropathy and some ominous changes in my heart and other organs. Now both arms are in braces for carpal tunnel syndrome and walking is no longer possible due to the lack of feeling in both legs. The latest doctor was the first to test my Kappa and Lambda light chains (along with protein in urine, and other related tests) and it appears to be amyloidosis. However, I won't know for sure until I get to the Mayo Clinic and have the hematology tests and biopsies done. If you are having a problem with PN that goes beyond RLS, have you asked your neurologist about checking on your free serum light chains?
I have had light chains checked but mine are fine, they can’t do the surgery to carpel tunnel syndrome. My husband had both hands fixed and it was a one day surgery?
RLS = Restless Leg Syndrome. Best thing you can do at this point is to Google that term and read about it in depth. Especially the pros and cons on the two main medications used to treat it: Requip and Mirapex. I have done both of them and I am on Mirapex now for several years.
I have been to many neurologists and cardiologists over the past 5 years in my home state, Hawaii, also in Washington State, California, and next will be in Arizona, trying to find a way to slow the progression of this peripheral neuropathy and some ominous changes in my heart and other organs. Now both arms are in braces for carpal tunnel syndrome and walking is no longer possible due to the lack of feeling in both legs. The latest doctor was the first to test my Kappa and Lambda light chains (along with protein in urine, and other related tests) and it appears to be amyloidosis. However, I won't know for sure until I get to the Mayo Clinic and have the hematology tests and biopsies done. If you are having a problem with PN that goes beyond RLS, have you asked your neurologist about checking on your free serum light chains?
Somebody mention an antibody that I have never heard of . I was going to look it up on google but can not find it in the thread again. If you see it let me know. It is all capital letters and driving me crazy but can not find it as I go through the thread
l work in a lab and that really concerns me that I hsve never heard of it. Will keep looking. Thank Ann
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)
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.
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
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
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I have had light chains checked but mine are fine, they can’t do the surgery to carpel tunnel syndrome. My husband had both hands fixed and it was a one day surgery?
Maybe you have. Narcolepsy on top of your RLS
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1 Reaction@lynsorensen - never heard of "free serum light chains" -
Somebody mention an antibody that I have never heard of . I was going to look it up on google but can not find it in the thread again. If you see it let me know. It is all capital letters and driving me crazy but can not find it as I go through the thread
l work in a lab and that really concerns me that I hsve never heard of it. Will keep looking. Thank Ann
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Hug
2 Reactions@user* I wrote one down, would this be it? FGFR3 antibody
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3 ReactionsTry researching Alpha-Lipoic Acid and Acetyl L-Carnitine. Both are suppose to help alleviate this condition. Good luck!
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1 ReactionMaybe 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)
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Like -
Helpful -
Hug
3 ReactionsNew 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.
-
Like -
Helpful -
Hug
2 ReactionsHi @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
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2 ReactionsYes I've had physical therapy seen chiropractor s.
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2 Reactions