[lucinda 2009]

Hi just found this great looking forum tonight - seems like an oasis to me. I am still in mid neurologist visits and just confused and tired of trying to make sense of things, would welcome any suggestions etc

My history is that I had tiredness, pains in my wrist and numbness in feet from summer 07 and my GP said its having 2 young kids (2 and 4) and wear and tear (am 45). June 08 I was in the park and had numbness from knees down both legs to my feet and in my hands, it happened just like that. I could feel but like wearing socks and burning feelings. I was exhausted for a few months and just got thru the day but wanted to sleep the whole time. I can't let the boys sit on my lap anymore as my feet get even number and more painful or if they knock into me it sends jars of discomfort. The tiredness has got much better tho am aware of energy reserves that run out. My wrists 'go' if I pick up heavy bags, right was out for a month in january after lifting one of the boys where it was continually uncomfortable and burning. I had tests for diabetes, thyroid, mri, lyme, b12, kidney, liver, choloestrol, hep c, hiv, ssep nothing so the neuro explained the mind body link at my consultation over xmas(!) - he then did a thermal test and said I had small fibre neuropathy. 2 weeks ago he emailed to say I had anti GQ1B IGG gangliosides which are associated with a rare variant of guillan barre called miller fisher I am confused as I have none of the symptoms I have found on the net eg eye problems or ataxia or areflexia. Does anyone else have something similar please and could you recommend any treatment?
Thank you

[darlindeb25]

Can you list any of your levels, especially B12. Often times a doctor will tell you the B12 level is fine, when really it's way too low. According to my doctors, my level is high enough at 1015, yet I do not dare stop my B12 or I will suffer. There are normal levels yes, but, I do not consider myself normal!

[daniella]

Hi first welcome and I am sorry you are facing this. I am not familiar with what you are going through but I know for myself I had to have repeats of my tests because of not showing certain things and then they did show. Do you have another apt soon to ask your questions to your neuro or could you call the office and ask?Are you on medication to help?

[mrsD]

I agree with Daniella... get those B12 numbers.
If below 500, you could use a supplement.

GBS is usually treated with IVIG... did your doctor mention that option?

Welcome to our PN board!

[nide44]

Having copies of all your records is extremely important, especially test results.
What one doc says is 'normal' another would raise a 'red flag'.
B12 below 600 is suspect (mine is 1100-1200 with supplements),
and should be supplemented with METHYLcobalamin-
not cyanocobalamin.

[lucinda 2009]

Thanks for your all of your kind words and advice, its really comforting to know that I am not alone

I looked at the blood results I have and there is nothing that says B12, the consultant's letter just said they were normal so I will ask for those, thank you. Its interesting darlindeb that you are looking at individual levels and not bound to what the gp says is the correct dose for you. The consultant offered pregabalin and amitriptyline and steroid injection in my wrist but I have steered away. I have an appointment with a new neurologist who specialises in PN at the end of the month so this is great I can ask about the B12 possibility and also why it fluctuates like some nights I keep waking with numbness in hands and fingers and others it doesn't so I want to work on my diet to see what difference, my consultant said there was nothing I could do diet wise but it seems that there is a lot that can be done.