Dear All,

I haven't posted much just recently. I've had my genetic testing back which was normal and I've also had a response from the NHS panel regarding IVIG. The panel have agreed the IVIG, which I was surprised about, but I've been really lucky to have a neurologist that works at the national hospital for Neuroscience and Neurology in London, he actually specialises in inflammatory neuropathies. He had put the application through as an inflammatory neuropathy due to its presentation (NLD SFN) and that I had an unusual biopsy showing increased nerve fibers.

I've had funny feelings all over my body which started at the end of 2012, it wasn't until 2014 when I was told it was SFN and I looked up all the horror stories the pain kicked in, I mean over a matter of hours I felt pain all over my body , I could feel it spreading to my scalp while cooking the dinner. I started to take amitriptyline and that seemed to help a bit but the anxiety and pain continued so I increased the amitriptyline. The pain continued, I tried Gabapentin but it didn't work. By Christmas eve 2014 I wasn't feeling as bad, on Boxing day I decided to try Lyrica which my neuro had suggested. As soon as I took 25mg, I had hardly any pain, the pain did increase slightly so I increased this again to 50mg, then again up to 100mg. I have hardly any pain since upping this last February.

As I was hoping to get the IVIG I thought about reducing the Lyrica, which I have done for the past two months. I am on 50mg now. I still have minimal pain, and thinking to reduce even more. I am wondering if the pain was actually calming down last year but I didn't realise it because of the meds. I am wondering if it is possible for it to have gone into remission? I still get some pain in the evening, more of a prickly feeling, sometimes after a hot bath. Also get a lot of buzzing in the bottom of feet. I have also noticed just recently I have had funny feeling in my throat when drinking fizzy drinks, I think the bubbles seems to aggravate it. So is it getting worse, who knows.

I know I shouldn't be complaining, i'm just wondering what to do, shall I go ahead with IVIG, as I am concerned as was told it was thought to be a progressive inflammatory SFN. Obviously don't want it to get worse. Neuro is on long term leave so can't speak to him about it...!

Hi LouLou,

I read that 11% can go into remission. You could tri-trate down to 25 mg of Lyrica and closely monitor if your symptoms change by writing them down via a daily diary. They say using a 1-10 scale is a good way to measure the pain levels. Either way it's great to hear you're feeling much less pain and discomfort.

Sorry, in regards to whether you should try IVIG I don't have any experience to say one way or the other. Although your doctor may be on leave I would think he/she would be best to make that decision. Isn't there a covering physician for your case?

Cliffman

Hi LouLou,

I really believe that stress/anxiety plays a big role for a certain percentage of people with SFN - and your description of how/when the pain really kicked in seems to kind of point in that direction - doesn't it? It seems that quite a few people (including me) have a reduction in symptoms after a while, and that tends to coincide with getting past the extreme stress and anxiety that naturally occurs when you first contract this disease.

As for whether or not to move forward with the IVIG - that's a tough call. That's not a treatment to be taken lightly, so you certainly don't want to go through it if not necessary. On the other hand, if you turn it down now - how hard will it be to get re-approved if you need it later?

You really should talk this over with a doctor that is knowledgeable in the treatment.

Thank you Ragtop and Cliffman. I think stress definitely caused the pain to come out. The neurologist said that the anxiety had brought all the pain out.

If you think about it I had probably had abnormal nerve fibers for the previous 2 years without the pain. I've now gone down to 25mg Lyrica, and still no pain. I have a feeling I've been fooled by the Lyrica thinking it was working really well, but it was just a coincidence and that pain was getting better as I feeling less anxious and more like my old self again.

I'm going to keep on 25mg of Lyrica for another week then stop completely. I think i'm going to have to have a chat with one of the other neurologists and see what they suggest. This was a trial of IVIG and I am sure my neurologist said we could sit on it and use it when I was ready.

I really think stress does something weird to the nerve endings and somehow irritates the nerves making damaged nerves more painful.

Not sure whether or not it's gone into remission, or if its just going to stay the same. I would really like a repeat biopsy to see what has happened to the nerves. Even if it had stayed the same, I think it would be reassuring .

If you had IVIG, then it can help with pain.
I know even folks that get IVIG for other situations and it helps them.
On the other coin, it has risks.
If I could get it, I would take it in a heartbeat-says the person that never liked to even take any medicine before.
God luck and glad you are feeling better.

Thanks baba22,

I am not having any pain at the moment, sometimes in the evenings I get a prickly feeling, or after a hot bath.

There would be no way of knowing if the treatment has worked or not for me, and it goes by your symptoms.

Equally, I do not want the inflammation to get any worse

My husband has been to see his neuro today for carpel tunnel. He asked about me and the neuro said I can hold ivig for up to 12 months. I think I am going to hang on and wait and see. My neuro is back now so need to have a chat with him.

I would really like a repeat biopsy to see what has happened to my nerves, I am now reduced to 25mg of lyrica and still not getting pain so I just can' t believe it!

I am thinking this may not even be autoimmune, and could possibly be the metronidazole I took in 2012. My neuro said I would have to take an awful lot for it to cause neuropathy. Also haven't seen any cases of NLD SFN related to metronidazole so all very confusing.

I think my nerves are damaged by something, and stress and anxiety seem to bring out all pain.

Just wish I knew .