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Old 08-20-2020, 08:37 AM #11
jelinx jelinx is offline
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Default glad i found your post

I tend to believe that glenntaj may be prophetic here. I put my first post in today and have the moderator approves it, you can read my quite similar story. I guess I am fortunate because this odd affliction (mine is almost the same as yours) hit me at 56. I think skin biopsy would be a good course of action. In the end, we probably DO have SFN. We can hope that it will progress as glenntaj has suggested. I almost want to give up hope as it CAN be a let down, and pursue acceptance instead. When I am expressing optimism, I say I will use this affliction to keep after my general health and work to learn mind over matter. My wife has spinal stenosis and she if very good at mind over matter. I have a very good friend who also suffer from chronic back pain. (This is maybe worse than SFN...maybe.) He has learned to manage that condition by maintaining his core strength. But he will ALWAYS have it.

If it is a sensory neuropathy, it should not lead to mobility problems. Having a family might be a good distraction.
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Old 08-24-2020, 03:48 AM #12
LeedsLad84 LeedsLad84 is offline
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Hi everyone

Just to update, the previous week was a good one. Symptoms were overall dampened but still not fully gone.

I started on a bunch of supplements last week too (the only thing I was taking previous to this was a Multi Vit, 1 fish oil capsule and Magnesium Oxide), so will see how they do and I will of course keep everyone up to date.

Due to have a follow up with my Neuro next week as well where I am sure he'll go through the EMG/NCS results, and also blood results around the antibodies etc.

For anyone interested, below is the supplementation guide I am following atm. If anyone has any thoughts/advice, would be happy to hear as I have just come up with this myself based on the numerous posts I've read here, including Mrs D's supplementation thread. I'm especially curious to know if I am supplementing the right way round, i.e. the right things in the AM on empty stomach vs. PM with food.

AM (on an empty stomach)

1 x Wellman Original Multivitamin (I will drop this soon)
1 x Magnesium Citrate (200mg)
1 x Alpha Lipoic Acid (100mg)
1 x Benfotiamine (300mg)

PM (with food)

2 x Omega 3 Fish Oil (1000mg)
1 x Evening Primrose Oil (1000mg)
1 x Grapeseed Extract (100mg)
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Old 08-24-2020, 08:30 PM #13
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Atticus (08-25-2020), LeedsLad84 (08-26-2020)
Old 08-25-2020, 01:01 AM #14
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Quote:
Originally Posted by LeedsLad84 View Post
Hi everyone

Just to update, the previous week was a good one. Symptoms were overall dampened but still not fully gone.

I started on a bunch of supplements last week too (the only thing I was taking previous to this was a Multi Vit, 1 fish oil capsule and Magnesium Oxide), so will see how they do and I will of course keep everyone up to date.

Due to have a follow up with my Neuro next week as well where I am sure he'll go through the EMG/NCS results, and also blood results around the antibodies etc.

For anyone interested, below is the supplementation guide I am following atm. If anyone has any thoughts/advice, would be happy to hear as I have just come up with this myself based on the numerous posts I've read here, including Mrs D's supplementation thread. I'm especially curious to know if I am supplementing the right way round, i.e. the right things in the AM on empty stomach vs. PM with food.

AM (on an empty stomach)

1 x Wellman Original Multivitamin (I will drop this soon)
1 x Magnesium Citrate (200mg)
1 x Alpha Lipoic Acid (100mg)
1 x Benfotiamine (300mg)

PM (with food)

2 x Omega 3 Fish Oil (1000mg)
1 x Evening Primrose Oil (1000mg)
1 x Grapeseed Extract (100mg)

Hey Leeds,

It can't have been easy for you coming on here, talking so openly about a difficult issue. A proud Yorkshire man born during the miner's strike having to admit to living in a soft, southern, big jessie county like Hertfordshire where the hardcore football team is Watford!! But joking aside, thanks for the update.

Interested to see your supplements. Surprised you're not taking a Vitamin B Complex, B6, Folic Acid, B2 all essential in my view. Especially surprised you're not taking B12. That measurement you had previously would have been affected by your tablet intake. You have to stop ingestion for 3 days to get an accurate picture. B12 is water soluble so you can't in the real world overdose. I take 1000ug of methylcobalamin daily. I prefer to take Omega 3 Algae Oil rather than fish oil to avoid heavy metals. You can also add Flaxseed and Chia seed to food to boost different types of Omega 3. I avoid Evening Primrose Oil because of its pro inflammatory Omega 6 but would like to hear your reasoning you take it. I've never tried Mg, I must admit I intended to but forgot! I also take coQ10 and Curcumin (from Turmeric) Creatine and Alpha Lipoic Acid (600mg). I've pretty much taken every supplement suggested on this site but those are the ones that I now take. I will add Mg

Quick question, are you seeing a Neurologist privately or on NHS?

Best wishes,

Atty.

Last edited by Atticus; 08-25-2020 at 02:08 AM.
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Old 08-25-2020, 08:38 PM #15
dcd2103 dcd2103 is offline
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Hey LeedsLad,

I'm a 38yo male in NYC. I have been suffering from autoimmune SFN for several years. I had a low titer ANA with autoimmune symptoms (migraine, mild joint pain, fatigue) for years, then developed a stomach bug in Costa Rica and the neuropathy came on fast and strong immediately afterwards. I have a technical background and have spent A LOT of time researching and reading about this condition and talking to specialists.

I can tell you that what you describe is a typical post-infectious autoimmune neuropathy. Most likely, the virus put your immune system into high-gear. There is some autoimmune/autoinflammatory mechanism that has been triggered.

The good news is that sometimes, with the right treatment, these things can go away. Not always, but it can happen. The bad news is that you are likely going to require some form of immunotherapy. In your case, the go-to first-line treatment in a situation like this is IVIG. Unfortunately, this is quite difficult obtain in the UK.

I would recommend

1.) talking to a specialist about IVIG and getting the process started ASAP.
2.) trying a course of prednisone as a "proof of concept". Often times a tapered methylprednisone pack can lower the inflammation enough such that you achieve temporary remission of syptoms, which would proove its autoimmune
3.) If you absolutely cant get IVIG, there are immunosuppresive approaches you can take, which you can talk to your dr about (Cellcept, Rituxin, Azathioprine).


I will check this board and can help answer any questions. I've helped quite a few people in the FB SFN group get their bearings straight and I really have dedicated my time towards helping people with this disease. It is amazing the lack of knowledge and understanding your general neurologist has with regard to this. They have such trouble even telling the difference between genetic, toxic, autoimmune or diabetic neuropathy, let alone treating them.
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Old 08-26-2020, 07:29 AM #16
LeedsLad84 LeedsLad84 is offline
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Quote:
Originally Posted by Atticus View Post
Hey Leeds,

It can't have been easy for you coming on here, talking so openly about a difficult issue. A proud Yorkshire man born during the miner's strike having to admit to living in a soft, southern, big jessie county like Hertfordshire where the hardcore football team is Watford!! But joking aside, thanks for the update.

Interested to see your supplements. Surprised you're not taking a Vitamin B Complex, B6, Folic Acid, B2 all essential in my view. Especially surprised you're not taking B12. That measurement you had previously would have been affected by your tablet intake. You have to stop ingestion for 3 days to get an accurate picture. B12 is water soluble so you can't in the real world overdose. I take 1000ug of methylcobalamin daily. I prefer to take Omega 3 Algae Oil rather than fish oil to avoid heavy metals. You can also add Flaxseed and Chia seed to food to boost different types of Omega 3. I avoid Evening Primrose Oil because of its pro inflammatory Omega 6 but would like to hear your reasoning you take it. I've never tried Mg, I must admit I intended to but forgot! I also take coQ10 and Curcumin (from Turmeric) Creatine and Alpha Lipoic Acid (600mg). I've pretty much taken every supplement suggested on this site but those are the ones that I now take. I will add Mg

Quick question, are you seeing a Neurologist privately or on NHS?

Best wishes,

Atty.
Ha ha

Something like that.

Thankfully, I still have all the Northern in me and religiously follow Leeds United.

TBH, I am new to the world of all this supplementing, so I am sure things are missing. I didn't add the Vitamin B stuff in due to the B12 result previously (I know its old) and that there accounted for in my multi vit. Definitely open to changing down the line though, but I have added stuff for the moment based on the forum and will see how I go before I add/remove anything.

I add Flax and Chia seeds to my daily smoothie, so covered on that front.

Re. EPO. It is the one I am most unsure on, but I read on here oils are good for nerve pain and I saw Mrs D reference it once, but you are right about the Omega 6 inflammation so I will probably stop that one now. I am certainly no expert here

My Neuro is through private also
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Old 08-26-2020, 05:13 PM #17
LeedsLad84 LeedsLad84 is offline
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Quote:
Originally Posted by dcd2103 View Post
Hey LeedsLad,

I'm a 38yo male in NYC. I have been suffering from autoimmune SFN for several years. I had a low titer ANA with autoimmune symptoms (migraine, mild joint pain, fatigue) for years, then developed a stomach bug in Costa Rica and the neuropathy came on fast and strong immediately afterwards. I have a technical background and have spent A LOT of time researching and reading about this condition and talking to specialists.

I can tell you that what you describe is a typical post-infectious autoimmune neuropathy. Most likely, the virus put your immune system into high-gear. There is some autoimmune/autoinflammatory mechanism that has been triggered.

The good news is that sometimes, with the right treatment, these things can go away. Not always, but it can happen. The bad news is that you are likely going to require some form of immunotherapy. In your case, the go-to first-line treatment in a situation like this is IVIG. Unfortunately, this is quite difficult obtain in the UK.

I would recommend

1.) talking to a specialist about IVIG and getting the process started ASAP.
2.) trying a course of prednisone as a "proof of concept". Often times a tapered methylprednisone pack can lower the inflammation enough such that you achieve temporary remission of syptoms, which would proove its autoimmune
3.) If you absolutely cant get IVIG, there are immunosuppresive approaches you can take, which you can talk to your dr about (Cellcept, Rituxin, Azathioprine).


I will check this board and can help answer any questions. I've helped quite a few people in the FB SFN group get their bearings straight and I really have dedicated my time towards helping people with this disease. It is amazing the lack of knowledge and understanding your general neurologist has with regard to this. They have such trouble even telling the difference between genetic, toxic, autoimmune or diabetic neuropathy, let alone treating them.
Hey thanks a lot for this. I will mention all when I speak to my Neuro next and report back!
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Old 08-28-2020, 04:15 AM #18
LeedsLad84 LeedsLad84 is offline
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Quote:
Originally Posted by dcd2103 View Post
Hey LeedsLad,

I'm a 38yo male in NYC. I have been suffering from autoimmune SFN for several years. I had a low titer ANA with autoimmune symptoms (migraine, mild joint pain, fatigue) for years, then developed a stomach bug in Costa Rica and the neuropathy came on fast and strong immediately afterwards. I have a technical background and have spent A LOT of time researching and reading about this condition and talking to specialists.

I can tell you that what you describe is a typical post-infectious autoimmune neuropathy. Most likely, the virus put your immune system into high-gear. There is some autoimmune/autoinflammatory mechanism that has been triggered.

The good news is that sometimes, with the right treatment, these things can go away. Not always, but it can happen. The bad news is that you are likely going to require some form of immunotherapy. In your case, the go-to first-line treatment in a situation like this is IVIG. Unfortunately, this is quite difficult obtain in the UK.

I would recommend

1.) talking to a specialist about IVIG and getting the process started ASAP.
2.) trying a course of prednisone as a "proof of concept". Often times a tapered methylprednisone pack can lower the inflammation enough such that you achieve temporary remission of syptoms, which would proove its autoimmune
3.) If you absolutely cant get IVIG, there are immunosuppresive approaches you can take, which you can talk to your dr about (Cellcept, Rituxin, Azathioprine).


I will check this board and can help answer any questions. I've helped quite a few people in the FB SFN group get their bearings straight and I really have dedicated my time towards helping people with this disease. It is amazing the lack of knowledge and understanding your general neurologist has with regard to this. They have such trouble even telling the difference between genetic, toxic, autoimmune or diabetic neuropathy, let alone treating them.
Hi man, I just wanted to ask a few more questions around this if that's ok.

From what I've read, IVIG is most useful in tackling the actual infection, however in my case I got rid of this and then the peripheral neuropathy started which has most likely caused this non length dependent small fibre damage.

I guess maybe I would like to understand how IVIG can actually help the above, or if I am maybe getting the round end of the stick?

Or is the main purpose here to potentially dampen the autoimmune/autoinflammatory mechanism which in turn would arrest or even reverse symptoms?
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Old 09-01-2020, 08:49 AM #19
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Can relate to this exactly with my experience, however not following an illness. 35 here also and up in Glasgow.

Only thing found with me was low folate which has been corrected. Spinal MRI clear. Had many neurological symptoms, which have come and went. Tethering over what it could be. I've went through the lot from stress to MS, to peripheral neuropathy caused by folate deficiency. Still no idea.

Going through NHS at the minute with neurologist, but painfully slow (pun intended). Frustrating thing is I have private healthcare now through a job promotion and can't use.

I am also going through a supplement programme shortly, and will update as to how this goes. Main ones being R-ALA, omega fish oil, magnesium, acetyl l-carnitine and a host of B vitamins.

Hope all is well with everyone in the meantime.
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Old 09-01-2020, 05:58 PM #20
LeedsLad84 LeedsLad84 is offline
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Can relate to this exactly with my experience, however not following an illness. 35 here also and up in Glasgow.

Only thing found with me was low folate which has been corrected. Spinal MRI clear. Had many neurological symptoms, which have come and went. Tethering over what it could be. I've went through the lot from stress to MS, to peripheral neuropathy caused by folate deficiency. Still no idea.

Going through NHS at the minute with neurologist, but painfully slow (pun intended). Frustrating thing is I have private healthcare now through a job promotion and can't use.

I am also going through a supplement programme shortly, and will update as to how this goes. Main ones being R-ALA, omega fish oil, magnesium, acetyl l-carnitine and a host of B vitamins.

Hope all is well with everyone in the meantime.
Keep us posted! Have you had an MRI of the brain and spine yet? I think thatís the clearest indicator of Ms. I had convinced myself I had it too but I think if your symptoms are mainly just sensory itís unlikely to be MS. Sensory symptoms accompanied with other things such as vision issues, loss of balance, etc may mean it is more likely but still a lot of neuro issues have mimicking symptoms so itís best not to get too down.

I have my appointment follow up with the new neuro on Friday. I am interested to see if anything was found in the blood work and his thoughts on my electric tests and temperature testing which were all normal.

My symptoms are still all over the place. Transient and day to day can vary, but main things are still visible twitching/muscle contractions, prickling and sometimes also itching. Seems to be no pattern whatsoever I can pin point as to how the body will be from day to day.
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