Hi Ride On

Its very normal l guess to have anxiety over something like this initially as the future seems very unknown and overwhelming, especially when most of what l read is terribly painful. But as l am doing more research and thankfully for this site, l am realising that the future may not be as bad as l once thought. I need to think positive and speak to people who have recovered, or at the least are not getting progressively worse. Horror stories are everywhere and l need to keep away from that if l am going to survive the initial phase of diagnosis and get my head in order.

I definitely need to calm down.
What about yourself. When do you get diagnosed and what are your symptoms. Do you think its from alcohol? And you don't have to answer this, but what is your age?

I am not in WA, but have moved to Noosa a year ago from Geelong.

The Neuro, l am seeing here is Doctor Schapel. I see him on Wed.
I went to see him last year after l suffered some dizziness and weird other symptoms, he said, because l had migraines in my early teens that this dizziness is a migraine in a different form. Even though l don't' many headaches now, and you don't need to have any headaches to have a migraine. Dizziness is just another symptom of a migraine. But now l must admit l am starting to have second thoughts about if its actually migraine or connected to NP. He recommended for me to take 400mg of B2 for 2 weeks and then cut it down gradually. He said to forget everything else, as it can do more harm than good. So l did have the b2 and it definitely helped. It calmed me down, and also treated most of the symptoms. I couldn't believe a single vitamin could do that. I now take b2 when l am feeling this dizziness coming and also now through this also taking normal b1 until l see him, then l will order the other b1 from the net as you can't get it here in Australia.

I have decided l will have 2 glasses of bubbles tomorrow and l will not worry about anything, just try and enjoy my birthday with my family.
But l will not have more than that, as l have been drinking too much in my life and definitely need to cut down, and having this has been a wake up call, l just hope its not too late. Too much partying is fun, but it takes a toll on me now, l am not a spring chicken anymore. Its weird because in my mind, l am still the same young me, but obviously my body thinks otherwise.

Sue

Sue, you sound much calmer. mrsD gave me some great advice in my hyper vigilant thread. Glad that you're going to enjoy your birthday

Glad to have you at Neuro Talk. I hope you can find some information here to help with PN. If you are at a standstill with your physicians, and not getting the help you need, I would go ahead and ask for a referral to another specialist. There is more than one medication that you can try to help ease the symptoms. I was young too, when I got an auto immune disease. Just 29. I was in a trail in a teaching hospital for many years. I know what it is like to be young with troubles. Try to keep a good outlook, and have hope that something more can be done for you. I don't give up on anything, until I get the best possible outcome for my conditions. I do wish you all the best. You can respond in any formun. Please feel at home here. Again welcome to Neruo Talk. ginnie

B1 is not the same as Benfotiamine. Benfotiamine is B1 that is water and fat soluble, very good.

Hi Sue,

I'm going on about 3 years with PN. It began in my toes, one foot slightly worse than the other (felt like I was walking around with tissue bunched up under my toes ) and progressed to where it is now within about 3-6 months, and stopped progressing, but I've cut out things that aggravate it, take supplements that help, and try to keep up with the memos (reading/learning, trying new things). I gave up on neurologists after 3 of them gave up on me, and I've been doing better ever since.

Sue, I have no idea. I don't know exactly what you feel (symptom-wise) but more importantly, you haven't gotten ANY tests/answers from your doctors yet.

However, if it were me, I'd put that bottle in the fridge until I knew something definite, and got my doctor's answer. We're not talking about very long. It'll still be there, and if things go well, there may be all the more reason for celebration. And... y'know... (Happy B-Day!)

Doc

She was also diagnosed with peripheral neuropathy. I just remember from her 40s on she just suffered with pain in her feet and how cold would make it worse. It got worse as she aged, and died 2 years ago at the age of 80. I'm scared that I will suffer like she did since I have it also.

With cold making it worse, I'd wonder if you should have tests for cryoglobulins. Or MGUS. These are antibody proteins that thicken the blood. It can be inherited, but is not like Charcot Marie Tooth inherited types of PN.

Dear Mrs.D,
Before I have my PN symptoms, I always feel cold when everybody around me are not. Everytime I mention this to my primary care physician, she would say its probably my thyroid. I sort of accepted it.

Since I have the PN symptoms, I constantly feel this coldness in my body. Actually, to be more precise, its in the part of my skin where the prickly sensation is felt most. I would feel cold when I yawn (which is very often), when i touch a metal or water AND when I feel cold its more intense because goose bumps will appear in the skin where I feel prickly the most. Although this sensation would only last a few seconds but it happens very, very often (perhaps every 15 mins or less, specially last winter) and the feeling of coldness/goosebumps is uncomfortable. I thought this could be just because of the hypersensitive skin. But now that you mentioned about MGUS, is my "cold sensation" similar to the kind of "cold" you were referring to?

Thank you, as always.

Do you think living in a warmer climate would help with NP symptoms?

Sue

I think the cold from MGUS or cryoglobulinemia is PAINFUL...like frostbite.

The cold from hypothyroid at least for me, is a deep cold, which leads me to making hot tea etc or soup.

PNers here typically cannot stand heat...and prefer cooler temps. We typically stick our feet out from under blankets etc.

When the heat sensing nerves are affected and over work, burning is often the result, and cooling off the area with Biofreeze or a cold pack helps.

The people with the increased viscosity of the blood however, seem to like warmer temperatures.

My feet will become uncomfortable at around 85 degrees.

PN is a mixed bag depending on your particular case. Over 100 types of PN you know!