[LouLou1978]

Hi all,

I have been on here a few times, I have SFN full body. I am in UK and have just had a letter my neurologist sent to my GP read out in full. These include comments on what the skin biopsy showed. My skin biopsy results came in January but my neurologist works in another country for a few months so was away and has only just commented on it.

my skin biopsy results were a bit unusual, it showed an increase in the nerve fibers rather than a loss. My neurologist has said this is consistent with inflammation. it was suggested by the professor I saw in London that it could be neuroinflammation or possibly caused by the drug Metronidazole. My neurologist thinks its not the Metronidazole as I would have had to take it for a long time before it causes these changes. I am lucky as he actually specialises in PN, so is quite clued up on SFN.

I now have an appointment to discuss steroids and IVig, It was advised in the letter this is something which shouldn't be taken lightly. He advised with IVig I would have to go to day clinic, for 5 days to have the treatment. I am also confused as how I understand it has to go to a panel in the UK, I am sure this is correct as i have checked out the criteria online, SFN isn't on the list!. There has been no mention of this in the letter, only that it will be given on a trial period. It maybe because the skin biopsy showed inflammation I don't know, but I am keen to get my appointment earlier so I can find out.

I just wondered, so how I understand, if there is inflammation going on , will this help? I really hope so, I was hoping it was the Metronidazole so then I guess it wouldn't get worse, now the neuro says it isn't, there is no chance of getter better or the nerves repairing.

I would be grateful of any comments :-)

[mrsD]

Well, just because the neuro SAYS it isn't doesn't mean it isn't.

Most drug reactions never get to a doctor, for them to see. Also some doctors will deny a drug's involvement consistently.

And finally a doctor's OPINION is just that, an opinion.

So the few patients who make it to the doctor, will be extreme and persistant, and few. There are some MRIs on the net showing demyelination in the brain, white spots on the films from metronidazole. These extreme patients were severe and on the drug a long time.

There could be another reason for your findings. The skin biopsy is rather new out there and not 100% understood. And you have only had the one.... it would be interesting to have another down the road to see if there are any changes.

I went back to your earlier posts. What did you take the metronidazole for? It is possible that the infection itself was the culprit, and the drug is just clouding things.

Did you ever take steroids to see if they dampen your symptoms? This would be a good test to show inflammation, which if they work, could point to using the IVIG then.

[LouLou1978]

Hello there Mrs D, thank you so much for replying.

I took the Metronidazole for a Bacterial Vaganosis, I took one lot in the November 2012, and the infection returned in Dec 2012 so took another lot.

I have never had any treatment with Steriods, i haven't seen my neurologist since the biopsy in January. I am hoping to get an appointment asap, as otherwise i have to wait until August. Do you think steroids would help if it is inflammation, or even ivig. If they did help could this actually get rid of the disease and sort the immune system out? sorry i don't know a lot about steroids and ivig.

[mrsD]

That is a long time ago.... What drugs are you using now?

All including OTC ones? Have you examined your activities for toxins? Solvents, heavy metals, vaccines? The fluoroquinolones are known for delayed reactions...more so than metronidazole.
But metronidazole does have the warnings now about neuropathies.

Are your symptoms today, disabling, very painful ...enough to do IVIG?

[LouLou1978]

Originally Posted by mrsD

That is a long time ago.... What drugs are you using now?

All including OTC ones? Have you examined your activities for toxins? Solvents, heavy metals, vaccines? The fluoroquinolones are known for delayed reactions...more so than metronidazole.
But metronidazole does have the warnings now about neuropathies.

Are your symptoms today, disabling, very painful ...enough to do IVIG?

I haven't used any drugs, the ones I use to treat my symptoms are Lyrica 50mg am 50mg pm and amatriptline 20mg. they are not disabling, I am quite well , although the symptoms are in my face and mouth, even eyes now. I had a baby in Dec 2011 I took metronidazole when I was pregnant and never had any problems, I have also taken it in my twenties and never had any problems. The only thing is, my husband is now having electric shock feelings in his fingers and toes, I hope this isn't some how related! So Mrs D, do you think IVig or steroids could help and get my immune system back on track, i'm not sure how they work! many thanks again

[mrsD]

After women have babies, their systems are often depleted of nutrients. Esp Omega-3's, B12, folate

Sometimes just correcting a nutrient issue fixes things after a baby. Also some women get low thyroid after a pregnancy.
But then some autoimmune problems rear up then too. So it is difficult to say what is going on with you.

I'd look to your environment for sure, since your husband is having issues. Could be food (gluten) or inhaled things.
Heavy metals are sneaky for example.

You could ask for a brief steroid treatment. Have you tried aspirin? Aspirin I find (I use AlkaSeltzer because it is dissolved there) very helpful at times. But I do not use it everyday because it can lead to GI bleeding. Response to aspirin is often a clue to inflammatory PN.

[LouLou1978]

Originally Posted by mrsD

After women have babies, their systems are often depleted of nutrients. Esp Omega-3's, B12, folate

Sometimes just correcting a nutrient issue fixes things after a baby. Also some women get low thyroid after a pregnancy.
But then some autoimmune problems rear up then too. So it is difficult to say what is going on with you.

I'd look to your environment for sure, since your husband is having issues. Could be food (gluten) or inhaled things.
Heavy metals are sneaky for example.

You could ask for a brief steroid treatment. Have you tried aspirin? Aspirin I find (I use AlkaSeltzer because it is dissolved there) very helpful at times. But I do not use it everyday because it can lead to GI bleeding. Response to aspirin is often a clue to inflammatory PN.

Hi there, I have tried alka seltzer, it didn't work for me. My husband is a painter and decorator, i'm not sure if paint fumes or anything like that can cause issues,.we have an open fire, he is always burning all sorts of things on there, i'm just trying to think of anything it could be, strangly my sister is now being investigated for SFN, as she has had abnormal sensations all over her body, no burning but hot feelings and crawling, she spent a lot of time at mine when going through a rough patch, it is all very worrying and making me think this could be related somehow. We are a very strange family! haha