New to PN forum
 

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

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!:p

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?

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!

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.

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

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.

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.

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.

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.

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.

Those GQ1b antibodies--
 

--are an interesting finding; that's rare enough (and you're right, they're usually associated with Miller-fisher syndrome and various brainstem/cranial/ocular symptoms) that they should be investigating deeper, possibly to see if they can reconfirm that finding or if there is cross-reactivity from other antibodies to gangliosides (especially the GT1a antibody, also associated with cranial/brainstem syndromes).

You do sound like a candidate for skin biopsy, to confirm that the small-fibers are damaged. My sense is that if you are having brainstem issues, that could show up on a thermal (quantitative sensory) test, but the skin biopsy would directly sample the small fibers.

Take a look at

http://neuromuscular.wustl.edu/over/labdis.html#gq1b

http://neuromuscular.wustl.edu/patho...ngliosides.htm

Many thanks for the really informative and helpful replies. You sort of want the doctors to be the experts but unfortunately that may not always be the case, I've booked to see my GP on Thursday to ask for copies of various tests going back as maybe its cultural but here we just tend to be told within normal range or not.

Food log is a great idea Mrs D, my family has a history of allergies, I too was hypothyroid in pregnancy 1 and had non malignant goitre, thyroid levels were normal again upon retesting, goitre grew larger in pregnancy 2 but remained non malignant, what is a radio uptake scan please - is that the same as testing to see if the goitre was malignant? My neuro had a eureka moment in Dec with Carpal Tunnel but, after the sseps/nerve conduction studies decided it was not. Yes the wrist supports are fab and add a certain glam to gardening, particularly the flesh coloured ones :cool:

Glenntaj, thanks for those links have looked at them and am going to print them out to try and get my head round them - what do you mean by brainstem issues please? I had an mri in july and they found nothing bar a little brain lesion of unknown aetiology and doubtful clinical significance was the sort of wording. I am seeing a PN expert at the end of the month so if I ask for GQ1B and GT1A retest and small fibre biopsy that should cover things - what about a spinal tap do you think that would provide further info.

Thanks again

Sarah

Results
 

I now have my results for B12 (which is within range) and serum folate was the only one out of the range apart from the thermal testing:

B12 on 5th Feb was: 571 ng/l (range 145-637)
serum folate was: 19.3 mg/ml (range 3.8 - 16.00)
hdl cholesterol was 1.42 (range >1.68)
* I have been taking a pantethine supplement along with my multivits since around october last year

It's great, and necessary, to be an agressive advocate for yourself, because doctor after doctor will really have no idea what is going on.

But I always cringe, and then wallow in self pity, when I see the word spinal tap or the letters LP. I've full body small fiber neuropathy, burning every day, and I went in search of IVIG (along with every other avenue I found) and had an LP performed. Obviously, it is a helpful diagnostic tool in many situations for most people. But it made my problems exponentially worse, creating an often debilitating havoc in my spine ever since.

So if you are indeed dealing with standard (and really, I know there's nothing 'standard' to one's pain and suffering) PN, stay far away from a spinal tap. It won't tell you anything you'll be able to find out from all the other tests available in regards to neuropathy.

-- Dennis

Spinal taps/lumbar punctures--
 

--are rarely a diagnostic clincher in and of themselves, unless one has some sort of central nervous system infection that is picked up there (i.e., meningitis or encephalitis), but often the protein levels, and the kinds of protein that are found, can be a clue to processes going on in the body, particularly autoimmune ones, and that's why they are often performed in more ambiguous cases for which other tests are not clinching a diagnosis (such as early MS or immune neuropathies).

Thanks
 

Many thanks Dennis and Glenntaj for your advice, definitely sounds like one not to go for - I really appreciate the great recommendations as it saves me going down a path that sounds as if it could potentially cause more problems or tell me nothing that is new.

Sarah