[LouLou1978]

Hi there ,

Not sure if you know my story but I have NLD SFN confirmed by punch biopsy. The biopsy showed increased nerve fibres so they think it is an inflammatory neuropathy. The neuro has therefore put in a application for IVIG. After the NHS loosing the application, the new one went in yesterday so still waiting to hear back from the panel.

I have had gentic testing done last year the SCN9A gene. This got lost somewhere along the line and so he requested that I have it done again, which I did in September. The results are back but nobody has got back to me as the neurologist is now on long term leave.

I am very worried about my 4 year old son, he is complaining of bugs crawling over him, and was saying at nursery he felt wobbly like a jelly!. I think I'm probably being a bit too panicky but because I haven't had the results of the gentic test back yet then I can't stop worrying that he has SFN too. If the Genetic test comes back normal can it still be passed on? Mine is idiopathic but suspected inflammatory. As the previous IVIG application got lost , it had to be signed off by another consultant, i would have thought if i did have the mutation they wouldn't go ahead with the ivig and signed the form.

Can't stop worrying , so fed up with it all!

[February]

Hi Loulou, hopefully they are sympathy pains. I know my family were alarmists over every single thing, growing pain or otherwise when I was sick. Understandably, I worry and (over?) reacted because I stood/ and still stand guard over the boogyman that got me. I am happy to report that years into this they are just fine.

That said, I have learned that antibiotics taken during pregnancy pass through the placenta and they are not sure how this may or may not affect the child. That is one area of interest I am keeping my eyes on.

[pinkynose]

It's good to see you posting. I've missed you February! Hope all is well.

Originally Posted by February

Hi Loulou, hopefully they are sympathy pains. I know my family were alarmists over every single thing, growing pain or otherwise when I was sick. Understandably, I worry and (over?) reacted because I stood/ and still stand guard over the boogyman that got me. I am happy to report that years into this they are just fine.

That said, I have learned that antibiotics taken during pregnancy pass through the placenta and they are not sure how this may or may not affect the child. That is one area of interest I am keeping my eyes on.

[zkrp01]

Originally Posted by LouLou1978

Hi there ,

Not sure if you know my story but I have NLD SFN confirmed by punch biopsy. The biopsy showed increased nerve fibres so they think it is an inflammatory neuropathy. The neuro has therefore put in a application for IVIG. After the NHS loosing the application, the new one went in yesterday so still waiting to hear back from the panel.

I have had gentic testing done last year the SCN9A gene. This got lost somewhere along the line and so he requested that I have it done again, which I did in September. The results are back but nobody has got back to me as the neurologist is now on long term leave.

I am very worried about my 4 year old son, he is complaining of bugs crawling over him, and was saying at nursery he felt wobbly like a jelly!. I think I'm probably being a bit too panicky but because I haven't had the results of the gentic test back yet then I can't stop worrying that he has SFN too. If the Genetic test comes back normal can it still be passed on? Mine is idiopathic but suspected inflammatory. As the previous IVIG application got lost , it had to be signed off by another consultant, i would have thought if i did have the mutation they wouldn't go ahead with the ivig and signed the form.

Can't stop worrying , so fed up with it all!

I have raised three kids and that is the limit of my experience.(disclaimer) In my opinion if the boy has seen you rub your legs and talk about the bugs crawling and he knows that YOUR legs get wobbly with effort I can totally see a 4yr old doing that. You are going to try to be a little sneaky and see if he acts differently when he doesn't know you are there. It could just be that he loves you very much. Hopefully, Ken in Texas.

[Healthgirl]

Originally Posted by LouLou1978

Hi there ,

Not sure if you know my story but I have NLD SFN confirmed by punch biopsy. The biopsy showed increased nerve fibres so they think it is an inflammatory neuropathy. The neuro has therefore put in a application for IVIG. After the NHS loosing the application, the new one went in yesterday so still waiting to hear back from the panel.

I have had gentic testing done last year the SCN9A gene. This got lost somewhere along the line and so he requested that I have it done again, which I did in September. The results are back but nobody has got back to me as the neurologist is now on long term leave.

I am very worried about my 4 year old son, he is complaining of bugs crawling over him, and was saying at nursery he felt wobbly like a jelly!. I think I'm probably being a bit too panicky but because I haven't had the results of the gentic test back yet then I can't stop worrying that he has SFN too. If the Genetic test comes back normal can it still be passed on? Mine is idiopathic but suspected inflammatory. As the previous IVIG application got lost , it had to be signed off by another consultant, i would have thought if i did have the mutation they wouldn't go ahead with the ivig and signed the form.

Can't stop worrying , so fed up with it all!

When did your symptoms start?
When you were little, did you have symptoms?
If yes, than I won't bother going on with what I want to say.

[LouLou1978]

Originally Posted by Healthgirl

When did your symptoms start?
When you were little, did you have symptoms?
If yes, than I won't bother going on with what I want to say.

Hi health girl. I didn't have symptoms when I was little.they started about 3 years ago. I am 38 now.

[Healthgirl]

Originally Posted by LouLou1978

Hi health girl. I didn't have symptoms when I was little.they started about 3 years ago. I am 38 now.

I would start writing things down that he says just in case.
I thought my daughters symptoms were just a coincidence or that she as empathizing with me. It wasn't until she mentioned a symptom that she never would have known I had (personal), that I realized it was real. Then over the summer with in 2 weeks of each other we started having a neurovasular reaction from the sun and it was quite obvious that something was going on.

My neuro thinks we were exposed to something that triggered some autoimmune process and that there must be a genetic predisposition.
I never had any symptoms like this as a child. This is clearly something that happened to us. No doctor has any idea what to do.

[LouLou1978]

Originally Posted by Healthgirl

I would start writing things down that he says just in case.
I thought my daughters symptoms were just a coincidence or that she as empathizing with me. It wasn't until she mentioned a symptom that she never would have known I had (personal), that I realized it was real. Then over the summer with in 2 weeks of each other we started having a neurovasular reaction from the sun and it was quite obvious that something was going on.

My neuro thinks we were exposed to something that triggered some autoimmune process and that there must be a genetic predisposition.
I never had any symptoms like this as a child. This is clearly something that happened to us. No doctor has any idea what to do.

Did you have genetic testing sc29a gene? Mine is thought inflammatory autoimmune. I've just heard yesterday I've been approved for ivig. My older son is fine. How's your children now?

[Healthgirl]

Originally Posted by LouLou1978

Did you have genetic testing sc29a gene? Mine is thought inflammatory autoimmune. I've just heard yesterday I've been approved for ivig. My older son is fine. How's your children now?

I haven't had genetic testing. Mine is thought by all the doctors I've seen to be inflammatory autoimmune as well. Two don't want to do IVIG for me and the one who thinks it will help cannot get it approved by my insurance.

My kids are still having neuro vascular stuff under their skin and occasional symptoms. I just thank God every day that what ever we were exposed to did not hurt them the way it hurt me. I truly believe in the bodies ability to heal so I am trying to stay positive. Very hard as you know -when every day is difficult.

Please let us know how your IVIG goes. I hope it helps. The doctor who wants to do it for me said that it is incredibly successful for autoimmune neuropathy.