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Old 02-03-2016, 02:16 PM #1
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Post SFN, Sjogrens, IVIG

I have been reading posts regarding SFN, Sjogren's, autoimmune deficiencies and IVIG . I was first Dx by punch skin biopsy in 2011 with Idiopathic SFN 5 years ago. It started with pins and needles in my calves and burning under my feet. I live in Long Island , NY. My Neuro-muscular Neurologist from Stony Brook Neurology did not think I was a "candidate" for IVIG at that time 2012. She said it was an aggressive treatment and my SFN was "too mild", and that the risks outweighed the benefits. Fast forward 5 years later. My SFN (Small Fiber Neuropathy) has progressed to my arms, hands, torso, face and mouth. My symptoms are bad pins and needles, horrible buzzing, tingling, stabbing, painful itching, tightening pains in my thighs and calves, bad burning all over, etc. I developed a bad tinnitus that coincides with the buzzing and burning. I have all the listed sfn symptoms and some..However my 3rd skin biopsy done at Mt Sinai Hospital, NY I had this past March 2015, showed "Normal..Non consistent with SFN". I was hopeful I was healing. Even Dr. Lan Zhou (You can look her up on the Internet, she is a "skin biopsy specialists") said it looked like my nerves were "healing" and that I should start to feel better. That never happen

I had many blood-tests, MRI'S Brain & Spine over the past 5 years and everything always came back with in normal range. Just recently one of my IGg (Subclass 3) was slightly low. Mine was 20, The lab range was 22+.. My Neurologist said it meant I had a "non-specific autoimmune deficiency". So He had me do a special blood test for Sjogren's. It was sent to Immco Diagnostics, (I was told they are the only Lab in the US that does this Blood testing).

Today the Doctor's office called me to tell me my test report came back , (I asked for a copy) it showed only 1 marker was elevated out of 15 Antibodies. It shows 29.5 and the Lab range is > (below) 20. The Carbonic Anhydrase VI (CA VI) IgM is elevated. I asked the coordinator what this meant, said she did not know and that I had to wait for the Doctor to explain to me what the results meant. The Neurologist ( of whom I don't like, his bed side manner is horrible) is on vacation until next week. I probably will not get an appt with this Neurologist for awhile. Should I go see my Rheumatologist instead?

I have no idea what is going on with me. All's I know is I have some kind of autoimmune disorder or disease or even Sjogren's that is either first or secondary to my painful SFN. I have read on the internet alot of bad things, how Sjogrens can attack body organs.

Can anyone help me interpret this until I see the Doctor? Does anyone know what this test result may mean based on what I wrote here? I'm depressed and and have some anxiety over this, If it is Sjogren's , then I will have a lifetime of a "progressive disease" with no treatment. (I'm afraid to have the IVIG Therapy). I do not have dry eyes or dry mouth. Just this painful nerve disorder. Sorry for the long post. Thank you in advance.

Last edited by Marie33; 02-03-2016 at 11:56 PM.
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Old 02-03-2016, 04:31 PM #2
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Quote:
Originally Posted by Marie33 View Post
I have been reading posts regarding SFN, Sjogren's, autoimmune deficiencies and IVIG . I was first dx by punch skin biopsy in 2011 with Idiopathic SFN 5 years ago. It started with pins and needles in my calves and burning under my feet. I live in Long Island , NY. My Neuro-muscular Neurologist from Stony Brook Neurology did not think I was not a "candidate" for IVIG at that time 2012. She said it was an aggressive treatment and my SFN was "too mild", and that the risks outweighed the benefits. Fast forward 5 years later. My SFN (Small Fiber Neuropathy) has progressed to my arms, hands, torso, face and mouth. My symptoms are bad pins and needles, horrible buzzing, tingling, stabbing, painful itching, tightening pains in my thighs and calves, bad burning all over, etc. I developed a bad tinnitus that coincides with the buzzing and burning. I have all the listed sfn symptoms and some..However my 3rd skin biopsy done at Mt Sinai Hopsital, NY I had this past March 2015, showed "Normal..Not consistent with SFN. I was hopeful I was healing. Even Dr. Lan Zhou (You can look her up on the Internet, she is a "skin biopsy specialists") said it looked like my nerves were "healing" and that I should start to feel better. That never happen

I had many blood-tests, MRI'S Brain & Spine over the past 5 years and everything always came back with in normal range. Just recently one of my IGg (Subclass 3) was slightly low. Mine was 20, The lab range was 22+.. My Neurologist said it meant I had a "non-specific autoimmune deficiency". So He had me do a special blood test for Sjogren's. It was sent to Immco Diagnostics, (I was told they are the only Lab in the US that does this Blood testing).

Today the Doctor's office called me to tell me my test report came back , (I asked for a copy) it showed only 1 marker was elevated out of 15 Antibodies. It shows 25.9 and the Lab range is > (below) 20. The Carbonic Anhydrase VI (CA VI) IgM is elevated. I asked the coordinator what this meant, said she did not know and that I had to wait for the Doctor to explain to me what the results meant. The Neurologist ( of whom I don't like, his bed side manner is horrible) is on vacation until next week. I probably will not get an appt with this Neurologist for awhile. Should I go see my Rheumatologist instead?

I have no idea what is going on with me. All's I know is I have some kind of autoimmune disorder or disease or even Sjogren's that is either first or secondary to moy painful SFN. I have read on the internet alot of bad things, how Sjogrens can attack body organs.

Can anyone help me with this until I see the Doctor? Does anyone know what this test result may mean based on what I wrote here? I'm depressed and and have some anxiety over this, If it is Sjogren's , then I will have a lifetime of a "progressive disease" with no treatment. (I'm afraid to have the IVIG Therapy). I do not have dry eyes or dry mouth. Just this painful nerve disorder. Sorry for the long post. Thank you in advance.
Marie... Really, so very sorry you suffer. I, too, have a similar story. My skin biopsy was negative with the exception of noting some "occasional axon all swellings" but nothing my neurologist considered significant. I have every symptom you have. My doctors -- and I've accumulated many in my search for an answer to my suffering -- now attribute my condition to central sensitization. I have similar symptoms to fibromyalgia, but not quite. Significant unrelenting burning and body pain everywhere but no classic tender points.
I understand your persistence in finding "the reason." I can't stop looking for one either; and I think I've become annoying to my doctors. I document everything, for what it's worth. I fight every day to maintain a fraction of the life I used to live and for a smile or two along the way. Blessings and hugs.
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Old 02-03-2016, 09:29 PM #3
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I'm not sure where the post was first made, but you recently asked about this (yesterday, I believe) and I posted a reply. You have since removed that post.

Here is a copy of what I said:

The test you had (from Immco) is brand new. I'm not sure how accurate it is. Some doctors say it is, yet others say it hasn't been backed up with clinical studies, etc. It's mostly used by ophthalmologists according to what I've read. Rheumatologists and neurologists use the serum SSA & SSB markers for diagnostics...AND the lip biopsy for confirmation (as 40% of serum labs are negative, even though the patients really do HAVE Sjogren's).

It certainly sounds as if you have a possible autoimmune basis to your SFN but odd that you don't have dry eyes/ or mouth (according to what you stated in the other post), so maybe it's not Sjogren's. Whatever is causing it, you need aggressive treatment before your nerve damage becomes permanent. I know IVIG sounds scary, but it really isn't that bad and most people tolerate it just fine.

You don't mention any other treatments you've tried. What have you tried? Before considering IVIG or other big guns, you need to try meds like Neurontin, Lyrica, Cymbalta, Nortriptyline, etc. I'm a bit shocked that you have dealt with this for 5+ years and have no treatment! Please tell me this isn't the case and that I've misunderstood you.
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Old 02-03-2016, 09:40 PM #4
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I've also reposted what I posted in the other thread yesterday:

Hi Marie,

I don't know about that test, but En Bloc clearly does. From the little of Know the most accurate test is the lip biopsy, which I'll push for in my own case. My ANA came back negative and I didn't know any other Sjogren's/autoimmune related testing. I had dry mouth but that's entirely gone at this point. I have issues with my eyes now and then, but it's not really dryness, or perhaps not typical.

On IVIG and treatment, En Bloc is the best to ask, since I am knew to this and so far I've received no treatment. But from what I've read, aggressive treatment may just be the best course for progressing SFN. Mine spread all over within a few months, and was pretty much all over already when it started, and has since remained stable and perhaps even improved in some respect. For that reason I haven't pursued medical treatment but continued my own natural course of treatment. That's for now at any rate. En Bloc has had to deal with the medical establishment and medical treatment, so she is the best to ask about this stuff.

I am so sorry your SFN is progressing and causing you such problems. I do hope you get good care for it. Have you tried diet and natural supplementation? I recall you may have, but can't be sure. They have helped me immensely.



Quote:
Originally Posted by Marie33 View Post
I have been reading posts regarding SFN, Sjogren's, autoimmune deficiencies and IVIG . I was first Dx by punch skin biopsy in 2011 with Idiopathic SFN 5 years ago. It started with pins and needles in my calves and burning under my feet. I live in Long Island , NY. My Neuro-muscular Neurologist from Stony Brook Neurology did not think I was not a "candidate" for IVIG at that time 2012. She said it was an aggressive treatment and my SFN was "too mild", and that the risks outweighed the benefits. Fast forward 5 years later. My SFN (Small Fiber Neuropathy) has progressed to my arms, hands, torso, face and mouth. My symptoms are bad pins and needles, horrible buzzing, tingling, stabbing, painful itching, tightening pains in my thighs and calves, bad burning all over, etc. I developed a bad tinnitus that coincides with the buzzing and burning. I have all the listed sfn symptoms and some..However my 3rd skin biopsy done at Mt Sinai Hospital, NY I had this past March 2015, showed "Normal..Non consistent with SFN". I was hopeful I was healing. Even Dr. Lan Zhou (You can look her up on the Internet, she is a "skin biopsy specialists") said it looked like my nerves were "healing" and that I should start to feel better. That never happen

I had many blood-tests, MRI'S Brain & Spine over the past 5 years and everything always came back with in normal range. Just recently one of my IGg (Subclass 3) was slightly low. Mine was 20, The lab range was 22+.. My Neurologist said it meant I had a "non-specific autoimmune deficiency". So He had me do a special blood test for Sjogren's. It was sent to Immco Diagnostics, (I was told they are the only Lab in the US that does this Blood testing).

Today the Doctor's office called me to tell me my test report came back , (I asked for a copy) it showed only 1 marker was elevated out of 15 Antibodies. It shows 29.5 and the Lab range is > (below) 20. The Carbonic Anhydrase VI (CA VI) IgM is elevated. I asked the coordinator what this meant, said she did not know and that I had to wait for the Doctor to explain to me what the results meant. The Neurologist ( of whom I don't like, his bed side manner is horrible) is on vacation until next week. I probably will not get an appt with this Neurologist for awhile. Should I go see my Rheumatologist instead?

I have no idea what is going on with me. All's I know is I have some kind of autoimmune disorder or disease or even Sjogren's that is either first or secondary to my painful SFN. I have read on the internet alot of bad things, how Sjogrens can attack body organs.

Can anyone help me interpret this until I see the Doctor? Does anyone know what this test result may mean based on what I wrote here? I'm depressed and and have some anxiety over this, If it is Sjogren's , then I will have a lifetime of a "progressive disease" with no treatment. (I'm afraid to have the IVIG Therapy). I do not have dry eyes or dry mouth. Just this painful nerve disorder. Sorry for the long post. Thank you in advance.
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Old 02-03-2016, 11:03 PM #5
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Hi Marie

"I do not have dry eyes or dry mouth."

These are the classical signs of what is called primary Sjogren's syndrome.

Secondary Sjogren's syndrome can also occur, often as part of another autoimmune disease like SLE or rheumatoid arthritis.

The general information here might be of some help to you; http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/.

All the best.
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Old 02-04-2016, 12:50 AM #6
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Post SFN, IVIG, Sjogren's

[QUOTE=en bloc;1197283]I'm not sure where the post was first made, but you recently asked about this (yesterday, I believe) and I posted a reply. You have since removed that post.

Here is a copy of what I said:

The test you had (from Immco) is brand new. I'm not sure how accurate it is. Some doctors say it is, yet others say it hasn't been backed up with clinical studies, etc. It's mostly used by ophthalmologists according to what I've read. Rheumatologists and neurologists use the serum SSA & SSB markers for diagnostics...AND the lip biopsy for confirmation (as 40% of serum labs are negative, even though the patients really do HAVE Sjogren's).

It certainly sounds as if you have a possible autoimmune basis to your SFN but odd that you don't have dry eyes/ or mouth (according to what you stated in the other post), so maybe it's not . Whatever is causing it, you need aggressive treatment before your nerve damage becomes permanent. I know IVIG sounds scary, but it really isn't that bad and most people tolerate it just fine.

You don't mention any other treatments you've tried. What have you tried? Before considering IVIG or other big guns, you need to try meds like Neurontin, Lyrica, Cymbalta, Nortriptyline, etc. I'm a bit shocked that you have dealt with this for 5+ years and have no treatment! Please tell me this isn't the case and that I've misunderstood you.

Hi En bloc, Thank you for your response. Sorry you had to re-post. I did have my post as a response. I didn't know how to start my own thread till today.
I did not realize the testing for Sjogrens from Immco Labs was brand new. I'm not even sure how to respond to that. I'm already scared and confused. I feel like I can not trust or believe any of these Doctors anymore.

My Neurologist made it sound like he has been using Immco for this test for a long time. My Rheumy wanted me to have a lip biopsy, but the Neurologist said the lip biopsy was not accurate. like the skin biopsy, he said they could "miss" when doing the biopsy and not get diseased fibers. So I could get a false-negative. He used my last "normal" skin biopsy as an example. He says he always uses blood tests, that they are more accurate. My original blood work from more then one Neurologist & Rheumatologist use the serum SSA & SSB markers, they always came back negative. This Neuro said he was testing outside the box and had me test with Immco.

I try not to think about my nerve damage becoming permanent. I guess I try to stay positive and always think I will start to get better before I get any worse. My Neurologist mentioned IVIG therapy. It scares me so much. I had a Spinal Tap last week, still waiting for the results. I think at my next appt he will bring up the IVIG. I know its expensive and I don't even know if my Ins will pay for it.

I did try all the meds you mention like Neurontin, Cymbalta, Nortriptyline, Amitriptyline, Tegretol, Trileptal, etc. I either couldn't tolerate the SE's or the med didn't work. I take 300 mgs Lyrica now (had to lower dose bc of SE's), Klonopin, Tramadol as needed (doesn't help) and use Lidocaine patches for burning feet. You mention I should try these meds for treatment before I consider IVIG. Aren't these meds we talked about just for pain? And the IVIG is a type of treatment? What other "treatment" options are there? I never tried prednisone. Should I ask about it? Could it help? I'm still struggling with just finding a medication that will help me to get to a functional point in my life. My PM Doctor is giving up on me, literally. Says "he never had a patient with my kind of pain and didnt know what else to offer me"!!

This is all so disheartening and disappointing for me. I was told all of this time that this SFN was unlikely to be Autoimmune mediated. I dont know which is worse , Idiopathic or having some known underlying disease.
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Old 02-04-2016, 09:30 AM #7
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Oh thank you Marie for giving me more details so I understand better what you're going through.

The Immco test has been around for only a year, maybe two...certainly NOT mainstream yet. And the jury is still out on the accuracy, but many people are optimistic that is offers early Dx by looking at different markers. The big hospitals (Johns Hopkins, for one) doesn't use it and my neuro from there told me Immco hasn't done any clinical studies for the test. That doesn't mean it isn't accurate...just that it hasn't finish some studies yet. I'm always happy to hear of more testing coming out for Sjogren's as the SSA & SSB markers are NOT all that accurate either with 40% of patients WITH Sjogren's will show negative on those markers...and this is confirmed by that same neuro at Hopkins!

Your neuro isn't 100% correct about the lip biopsy and 'missing' the diseases glands. A good doctor (usually an oral surgeon or ENT) performing the test (not a neuro, by the way) always takes 6-8 samples to ensure they get a complete study and include any diseased tissues. The biggest problem with lip biopsies is the lack of proper samples taken and an inexperienced pathologist reading it. So you & your neuro should make sure of the doctors involved in the procedure, that they are competent.

It is best to just focus on where you are at NOW, not a permanent situation down the road (which may never happen). I was talking in the means of not hearing that anything had been done for you after YEARS and without treatment, permanent damage can occur. I am relieved to know that you have been offered numerous treatments, but sad to hear they didn't work or SE too difficult to handle. Yes, IVIG will treat the condition vs the pain meds to treat the symptoms. If you don't have a cause identified, then sometimes you have to treat the symptoms...because you don't know what the cause is to treat that. Steroids are an option you should consider...JUST to see if the neuropathy is inflammatory based. A short course will let you know within days if it will help. They may be able to use the new Immco test to get approval for IVIG. I know it can be scary but it really is well tolerated by most people. All meds have SE and IVIG does too. I put the link here from another thread in which I discuss the IVIG treatment itself (and SE's). Hopefully it will help you understand the procedure. The entire thread is full of information, but post #15 is where is describe the treat itself and SE's.

http://neurotalk.psychcentral.com/thread229739-2.html

I too struggled with pain for many years (I've had this for 19 years) and took all the meds you listed...and then some others. I now take narcotic pain meds. My pain mgmt doctor told me that pain patches (Fentanyl, specifically) works great for nerve pain and he is right!! It really helps more than anything else I've tried. It's not great for joint pain but I take some thing else for that. You might want to discuss other pain med options with your PM doctor. It's a difficult decision to make the step to narcotics, but it can be done slowly and in lower doses. I will tell you that it has given me the 'function' back that I lacked for many years. Just a thought to consider.

Hope this helps.
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Old 02-04-2016, 09:33 AM #8
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[QUOTE=Marie33;1197302]
Quote:
Originally Posted by en bloc View Post
I'm not sure where the post was first made, but you recently asked about this (yesterday, I believe) and I posted a reply. You have since removed that post.

Here is a copy of what I said:

The test you had (from Immco) is brand new. I'm not sure how accurate it is. Some doctors say it is, yet others say it hasn't been backed up with clinical studies, etc. It's mostly used by ophthalmologists according to what I've read. Rheumatologists and neurologists use the serum SSA & SSB markers for diagnostics...AND the lip biopsy for confirmation (as 40% of serum labs are negative, even though the patients really do HAVE Sjogren's).

It certainly sounds as if you have a possible autoimmune basis to your SFN but odd that you don't have dry eyes/ or mouth (according to what you stated in the other post), so maybe it's not . Whatever is causing it, you need aggressive treatment before your nerve damage becomes permanent. I know IVIG sounds scary, but it really isn't that bad and most people tolerate it just fine.

You don't mention any other treatments you've tried. What have you tried? Before considering IVIG or other big guns, you need to try meds like Neurontin, Lyrica, Cymbalta, Nortriptyline, etc. I'm a bit shocked that you have dealt with this for 5+ years and have no treatment! Please tell me this isn't the case and that I've misunderstood you.

Hi En bloc, Thank you for your response. Sorry you had to re-post. I did have my post as a response. I didn't know how to start my own thread till today.
I did not realize the testing for Sjogrens from Immco Labs was brand new. I'm not even sure how to respond to that. I'm already scared and confused. I feel like I can not trust or believe any of these Doctors anymore.

My Neurologist made it sound like he has been using Immco for this test for a long time. My Rheumy wanted me to have a lip biopsy, but the Neurologist said the lip biopsy was not accurate. like the skin biopsy, he said they could "miss" when doing the biopsy and not get diseased fibers. So I could get a false-negative. He used my last "normal" skin biopsy as an example. He says he always uses blood tests, that they are more accurate. My original blood work from more then one Neurologist & Rheumatologist use the serum SSA & SSB markers, they always came back negative. This Neuro said he was testing outside the box and had me test with Immco.

I try not to think about my nerve damage becoming permanent. I guess I try to stay positive and always think I will start to get better before I get any worse. My Neurologist mentioned IVIG therapy. It scares me so much. I had a Spinal Tap last week, still waiting for the results. I think at my next appt he will bring up the IVIG. I know its expensive and I don't even know if my Ins will pay for it.

I did try all the meds you mention like Neurontin, Cymbalta, Nortriptyline, Amitriptyline, Tegretol, Trileptal, etc. I either couldn't tolerate the SE's or the med didn't work. I take 300 mgs Lyrica now (had to lower dose bc of SE's), Klonopin, Tramadol as needed (doesn't help) and use Lidocaine patches for burning feet. You mention I should try these meds for treatment before I consider IVIG. Aren't these meds we talked about just for pain? And the IVIG is a type of treatment? What other "treatment" options are there? I never tried prednisone. Should I ask about it? Could it help? I'm still struggling with just finding a medication that will help me to get to a functional point in my life. My PM Doctor is giving up on me, literally. Says "he never had a patient with my kind of pain and didnt know what else to offer me"!!

This is all so disheartening and disappointing for me. I was told all of this time that this SFN was unlikely to be Autoimmune mediated. I dont know which is worse , Idiopathic or having some known underlying disease.
Sorry to hear you're having a hard time getting answers. If they suspect Sjogren's there are specific eye tests that can be used to help diagnoses if you have it. From the Mayo Clinic "Your doctor can measure the dryness of your eyes with a test called a Schirmer tear test. In this test, a small piece of filter paper is placed under your lower eyelid to measure your tear production.A doctor specializing in the treatment of eye disorders (ophthalmologist) may also examine the surface of your eyes with a magnifying device called a slit lamp. He or she may place drops in your eye that make any damage to your cornea easier to see."

Also take a look at the detailed info from the Cleveland Clinic; https://my.clevelandclinic.org/servi...grens-syndrome

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Old 02-05-2016, 04:44 AM #9
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Quote:
Originally Posted by Marie33 View Post
I have been reading posts regarding SFN, Sjogren's, autoimmune deficiencies and IVIG . I was first Dx by punch skin biopsy in 2011 with Idiopathic SFN 5 years ago. It started with pins and needles in my calves and burning under my feet. I live in Long Island , NY. My Neuro-muscular Neurologist from Stony Brook Neurology did not think I was a "candidate" for IVIG at that time 2012. She said it was an aggressive treatment and my SFN was "too mild", and that the risks outweighed the benefits. Fast forward 5 years later. My SFN (Small Fiber Neuropathy) has progressed to my arms, hands, torso, face and mouth. My symptoms are bad pins and needles, horrible buzzing, tingling, stabbing, painful itching, tightening pains in my thighs and calves, bad burning all over, etc. I developed a bad tinnitus that coincides with the buzzing and burning. I have all the listed sfn symptoms and some..However my 3rd skin biopsy done at Mt Sinai Hospital, NY I had this past March 2015, showed "Normal..Non consistent with SFN". I was hopeful I was healing. Even Dr. Lan Zhou (You can look her up on the Internet, she is a "skin biopsy specialists") said it looked like my nerves were "healing" and that I should start to feel better. That never happen

I had many blood-tests, MRI'S Brain & Spine over the past 5 years and everything always came back with in normal range. Just recently one of my IGg (Subclass 3) was slightly low. Mine was 20, The lab range was 22+.. My Neurologist said it meant I had a "non-specific autoimmune deficiency". So He had me do a special blood test for Sjogren's. It was sent to Immco Diagnostics, (I was told they are the only Lab in the US that does this Blood testing).

Today the Doctor's office called me to tell me my test report came back , (I asked for a copy) it showed only 1 marker was elevated out of 15 Antibodies. It shows 29.5 and the Lab range is > (below) 20. The Carbonic Anhydrase VI (CA VI) IgM is elevated. I asked the coordinator what this meant, said she did not know and that I had to wait for the Doctor to explain to me what the results meant. The Neurologist ( of whom I don't like, his bed side manner is horrible) is on vacation until next week. I probably will not get an appt with this Neurologist for awhile. Should I go see my Rheumatologist instead?

I have no idea what is going on with me. All's I know is I have some kind of autoimmune disorder or disease or even Sjogren's that is either first or secondary to my painful SFN. I have read on the internet alot of bad things, how Sjogrens can attack body organs.

Can anyone help me interpret this until I see the Doctor? Does anyone know what this test result may mean based on what I wrote here? I'm depressed and and have some anxiety over this, If it is Sjogren's , then I will have a lifetime of a "progressive disease" with no treatment. (I'm afraid to have the IVIG Therapy). I do not have dry eyes or dry mouth. Just this painful nerve disorder. Sorry for the long post. Thank you in advance.
i would go suggest the rheumatologist, since you have an elevated anti-carbonic anhydrase antibodies, maybe at least can shed some light on it, I LOOKed up on ncbi, it could be associated with other autoimmunes besides sogrens.
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Originally Posted by Marie33 View Post
I have been reading posts regarding SFN, Sjogren's, autoimmune deficiencies and IVIG . I was first Dx by punch skin biopsy in 2011 with Idiopathic SFN 5 years ago. It started with pins and needles in my calves and burning under my feet. I live in Long Island , NY. My Neuro-muscular Neurologist from Stony Brook Neurology did not think I was a "candidate" for IVIG at that time 2012. She said it was an aggressive treatment and my SFN was "too mild", and that the risks outweighed the benefits. Fast forward 5 years later. My SFN (Small Fiber Neuropathy) has progressed to my arms, hands, torso, face and mouth. My symptoms are bad pins and needles, horrible buzzing, tingling, stabbing, painful itching, tightening pains in my thighs and calves, bad burning all over, etc. I developed a bad tinnitus that coincides with the buzzing and burning. I have all the listed sfn symptoms and some..However my 3rd skin biopsy done at Mt Sinai Hospital, NY I had this past March 2015, showed "Normal..Non consistent with SFN". I was hopeful I was healing. Even Dr. Lan Zhou (You can look her up on the Internet, she is a "skin biopsy specialists") said it looked like my nerves were "healing" and that I should start to feel better. That never happen

I had many blood-tests, MRI'S Brain & Spine over the past 5 years and everything always came back with in normal range. Just recently one of my IGg (Subclass 3) was slightly low. Mine was 20, The lab range was 22+.. My Neurologist said it meant I had a "non-specific autoimmune deficiency". So He had me do a special blood test for Sjogren's. It was sent to Immco Diagnostics, (I was told they are the only Lab in the US that does this Blood testing).

Today the Doctor's office called me to tell me my test report came back , (I asked for a copy) it showed only 1 marker was elevated out of 15 Antibodies. It shows 29.5 and the Lab range is > (below) 20. The Carbonic Anhydrase VI (CA VI) IgM is elevated. I asked the coordinator what this meant, said she did not know and that I had to wait for the Doctor to explain to me what the results meant. The Neurologist ( of whom I don't like, his bed side manner is horrible) is on vacation until next week. I probably will not get an appt with this Neurologist for awhile. Should I go see my Rheumatologist instead?

I have no idea what is going on with me. All's I know is I have some kind of autoimmune disorder or disease or even Sjogren's that is either first or secondary to my painful SFN. I have read on the internet alot of bad things, how Sjogrens can attack body organs.

Can anyone help me interpret this until I see the Doctor? Does anyone know what this test result may mean based on what I wrote here? I'm depressed and and have some anxiety over this, If it is Sjogren's , then I will have a lifetime of a "progressive disease" with no treatment. (I'm afraid to have the IVIG Therapy). I do not have dry eyes or dry mouth. Just this painful nerve disorder. Sorry for the long post. Thank you in advance.
I've had the same symptoms as you're describing and have been diagnosed with peripheral neuropathy due to Sjogrens. I've received IVIG infusions monthly for a year. They may have helped some as this is my first month without them and I'm much worse. I had some fatigue and minor headaches for a couple of days after the treatments. No other symptoms. I'm trying to decide if the hair loss I've experienced was from the IVIG or from the Hashimotos that I also have. I upped my thyroid med about a month before stopping the infusions so it's hard to tell. I hope you're feeling better.
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