Disrupted calcium signaling pathway and Small Fiber Nephropathy

Peyt

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Hi,
My question: How can disruption in the Calcium pathyway be tested and diagnosed??

I have been diagnosed with SFN through a Q-sweat test(during a tilt table test) and have all the symptoms along with POTS and reoccurring headaches. So far, the only medication that I have tried which actually helped without causing other side effects is a injection called AMOVIG for my headaches. AMOVIG works on the Calcitonin gene-related peptide receptor .. Also, I have had recurring kidney stones that are diagnosed to be Calcium Oxales. ... So I read somewhere on this site that some people with SFN have a disruption in the Calcium pathway and this could be the cause of their SFN... Can anyone give me more information on this? I would like to discuss this with my Neurologist the next time I see him but would like more information as to how can disruption in the Calcium pathyway be tested and diagnosed??
Thanks so much,
 

Gingergrrl

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I have been diagnosed with SFN through a Q-sweat test(during a tilt table test) and have all the symptoms along with POTS
I was diagnosed with neuropathy to the long branch nerves to the feet during a QSART test (as part of a TTT) in early 2016 b/c I had an abnormal sweat response to the feet. I was also diagnosed with "Severe POTS" from that same test (which I already knew and had been dealing with since Jan 2013).

The same battery of testing included blood tests that were sent to Mayo Clinic that showed that I had the N-type Calcium Channel autoantibody (or LEMS autoantibody) and another autoantibody called anti GAD65. I cannot tell you how all of these things fit together as much as I wish I could! In my case, it was ultimately determined that everything had an underlying autoimmune basis and treatments for autoimmunity were extremely helpful, one of which I am still doing every six months (Rituximab).

I would like to discuss this with my Neurologist the next time I see him but would like more information as to how can disruption in the Calcium pathyway be tested and diagnosed??
In my case the disruption to the calcium channels was b/c of an autoantibody that caused muscle weakness and breathing weakness (which is now gone from my treatments). I don't know if this is relevant in your case. I've been trying to piece this all together since I learned I had this autoantibody in 2016 but still don't really understand it :confused:
 

Peyt

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I was diagnosed with neuropathy to the long branch nerves to the feet during a QSART test (as part of a TTT) in early 2016 b/c I had an abnormal sweat response to the feet. I was also diagnosed with "Severe POTS" from that same test (which I already knew and had been dealing with since Jan 2013).

The same battery of testing included blood tests that were sent to Mayo Clinic that showed that I had the N-type Calcium Channel autoantibody (or LEMS autoantibody) and another autoantibody called anti GAD65. I cannot tell you how all of these things fit together as much as I wish I could! In my case, it was ultimately determined that everything had an underlying autoimmune basis and treatments for autoimmunity were extremely helpful, one of which I am still doing every six months (Rituximab).



In my case the disruption to the calcium channels was b/c of an autoantibody that caused muscle weakness and breathing weakness (which is now gone from my treatments). I don't know if this is relevant in your case. I've been trying to piece this all together since I learned I had this autoantibody in 2016 but still don't really understand it :confused:
Thanks, your response was great help.
Did you ever contract the Chickenpox (varicella-zoster) virus ?
I got that as a child.
 

Gingergrrl

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Thanks, your response was great help. Did you ever contract the Chickenpox (varicella-zoster) virus ? I got that as a child.
I had chickenpox at age 11 (many years before the vaccine existed) but it was a very mild case. Oddly enough when I first saw my ME/CFS specialist in 2014 (who is still my main doctor now in 2019), he tested me for many viruses and I was IgM+ for VZV! I was also IgM+ for EBV (and had severe Mono in 2012 so this made sense) but was baffled why I was IgM+ for VZV! I have never had shingles. Why do you ask (just curious if there is a connection)?
 

Peyt

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I had chickenpox at age 11 (many years before the vaccine existed) but it was a very mild case. Oddly enough when I first saw my ME/CFS specialist in 2014 (who is still my main doctor now in 2019), he tested me for many viruses and I was IgM+ for VZV! I was also IgM+ for EBV (and had severe Mono in 2012 so this made sense) but was baffled why I was IgM+ for VZV! I have never had shingles. Why do you ask (just curious if there is a connection)?
Listen to question asked at around 47:30 min of this video regarding Post herpetic neuralgia:
I am assuming that's why IVIG is helping , it's suppressing the virus

My question is would that new Shingles vaccine that she mentioned help people like us against Post herpetic neuralgia or just helps from a future Shingles outbreak?
 
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Hey @Peyt,

I'm gonna sound like an old, school marm here, but I want to point out that an abnormal QSART test (which I share with you and @Gingergrrl) points to the *possibility* of a small fiber neuropathy.

A skin biopsy of/near the affected area is needed to detect whether or not there is an actual loss of small fiber nerves or diminished sweat glands.

I wanted to share this with you because my skin biopsy was negative for SFN or any abnormalities with my sweat glands.

This lead to a nerve conduction study of my lower limbs which, unfortunately, revealed mixed sensory/motor neuropathy.

I hope this info is helpful to you, and not annoying.

I'm just trying to look out for you to ensure you aren't on the receiving end of lazy doctoring.

Best,
Z
 

Peyt

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Hey @Peyt,

I'm gonna sound like an old, school marm here, but I want to point out that an abnormal QSART test (which I share with you and @Gingergrrl) points to the *possibility* of a small fiber neuropathy.

A skin biopsy of/near the affected area is needed to detect whether or not there is an actual loss of small fiber nerves or diminished sweat glands.

I wanted to share this with you because my skin biopsy was negative for SFN or any abnormalities with my sweat glands.

This lead to a nerve conduction study of my lower limbs which, unfortunately, revealed mixed sensory/motor neuropathy.

I hope this info is helpful to you, and not annoying.

I'm just trying to look out for you to ensure you aren't on the receiving end of lazy doctoring.

Best,
Z
Thanks for your reply.
Yes, I am going to ask my doctor for a skin biopsy next time I see him. I am hoping he will agree. My nerve conduction study of lower limbs (which was done twice) showed no Peripheral Nephropathy
 

Gingergrrl

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I am assuming that's why IVIG is helping , it's suppressing the virus
In my case, I did high dose IVIG for autoimmunity (not to suppress viruses or for immune deficiency). I was IgM+ for EBV and VZV for several years but this had nothing to do with the IVIG (in my case).

My question is would that new Shingles vaccine that she mentioned help people like us against Post herpetic neuralgia or just helps from a future Shingles outbreak?
I have never had shingles, and wouldn't be the right person to answer your question, and I cannot have any vaccines b/c I am doing Rituximab.

I'm gonna sound like an old, school marm here, but I want to point out that an abnormal QSART test (which I share with you and @Gingergrrl) points to the *possibility* of a small fiber neuropathy. A skin biopsy of/near the affected area is needed to detect whether or not there is an actual loss of small fiber nerves or diminished sweat glands.
Thank you for explaining that and the Neuro who (technically) ordered the autonomic testing for me in 2016 never interpreted it or made any suggestions. I was able to get the report and the QSART was abnormal and said long branch neuropathy to the feet and abnormal sweat response (but I never had any symptoms with my feet).

That same Neuro ordered blood testing of autoantibodies and that was what led to my future treatments and officially clarified that my Dysautonomia and POTS were autoimmune (among other autoimmune problems). I later asked my main doctor if a skin biopsy for SFN would be of any use but he said that I had so much other proven autoimmunity, that even if we assumed the biopsy was positive, it would not have changed his treatment plan.

This lead to a nerve conduction study of my lower limbs which, unfortunately, revealed mixed sensory/motor neuropathy.
Did you have muscle weakness?

I hope this info is helpful to you, and not annoying.
I find all of your posts incredibly helpful @Zebra and really appreciate the info that you share.

Yes, I am going to ask my doctor for a skin biopsy next time I see him.
Best wishes and keep us posted.