[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.

[lucinda 2009]

Sorry Mrs D, no my neuro did not mention IVIG, he was happy to leave it at that, I pressed for a further referral to a specialist.

[daniella]

You would be amazed at how many doctors are clueless about nutritionist and supplements. I do know I saw a holistic type doctor who was more intuned but many regular physcians are not. I am not saying it is a cure but a combo approach could benefit. I see you are not in the US and correct me wrong but don't many reumatolgist order the ivig or indicate if it could help? Hang in there and you are not alone though I know it can feel like it that is for sure.

[mrsD]

Originally Posted by 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.

Things that come and go... one thing that you can do is keep a food journal and see what triggers bad days/nights. Sometimes you can find a clue there.
Also log your activity level in the journal and compare what happens later that day or the next. Food issues often have a delay..they may appear the next day.
When I was hypothyroid, I had terrible carpal tunnel AND foot pain. Because my tests looked fairly normal no doctor would address this. When I finally had one test a little off, I demanded a radio uptake scan, and that is where the partially dead thyroid was found. Females often have hypothyroid issues following pregnancies. Sometimes you have to be persistent with doctors. For example, the TSH scale has changed. It used to be 1-5 or 1-6, and now many doctors use 1-3 as the new range. If you are TSH 5, then you may indeed have low thyroid and could benefit from treatment. I only use 75 mcg daily, and that was enough for me to improve the carpal tunnel and feet. (not 100%, but enough so that I don't complain about it anymore).

MSG, or some other food intolerance may be a factor.
Fluid retention from too much salt will also cause some
compression numbness.

One has to really become a detective of sorts, to find answers. Everyone is different and people react to environmental things differently.

I found that the wrist braces made for carpal tunnel worked very well for me. You wear them at night, to protect the wrists from compressing nerves. I was told to wear them when I was pregnant, and had to have the EMGs etc for diagnosis. I keep them today even, if I overdo in the garden, I might have to wear them for a few days afterwards.

[darlindeb25]

Its interesting darlindeb that you are looking at individual levels and not bound to what the gp says is the correct dose for you.

Lucinda, I think doctors often times, are too dependent on "normal levels". Normal is a generalization, and we do not all fit that prodocol. It's not normal for a person to have celiac disease, or neuropathy, or diabetes, or CFS, or sleep apnea, or, or, or. So, if some of us have these different syndromes and such, how can a doctor determine normal for us by a healthy person's standards. A level of 500 for B12 is not normal for me, I need a much higher level. With Vit D, if 50 is considered an optimal level, how my level of 26 be normal, it sound way too low to me.

Sometimes, we have to cross the line and accept that it's up to us to fix ourselves. I research and research before I make a decision to try something. Had I listened to doctors about my B12 level, I probably would have seen some nasty changes in my neuropathy.