For everything you said. This means so much to me. It's music to my ears.

I agree with you, l need to keep busy, to get my mind of this and stop driving myself mad.
Today we went out for a drive and it was great to get out and I'd something a bit different. Even though this morning l woke up feeling floaty, and kind of out of it a bit, l still tried to remain positive and move on.

Last night for the first time since getting hot feet l slept without having my feet elevated. Slept well, but wake up too early and go to bed too late, and am exhausted, but still more positive today than yesterday.

My mum is great and she gives great advice, and l need to embrace it.
My husband thinks the same as you, and says to me often to panick too much about things on the web. He knows l can get completely anxiouse reading all the information about PN? He thinks l have blown it out of proportion. That l haven,t even been diagnosed yet.

My poor girls haven,t had much a mum lately as my mind is only on PN.

But after reading what you wrote, l am now going to move on with more hope and positivity and go back to being present with my girls. I am so glad to hear yours hasn't progressed. You have no idea how good it is to hear this.

Can l just ask you how long have you had it?

Also, just your opion, do you think it is safe me to have 1-2 wines tomorrow for my birthday? Do you think l will damage more nerves?

Thanks so much, l really appreciate your views which have made me feel so much better.

Else's stories and thoughts you have no idea how much this means to me. Especially the ones where they have found the cause and haven't progressed.

Also, l have always done mediation to calm my mind but in this past week l just couldn't do it. Need to go back to it, to calm my busy mind.

Sue

Hi Sue, I hope you have a great birthday. I think I'm in a similar place to you, and it sounds like most people go through a phase of being overwhelmed. It really is hard to calm down and it becomes a vicious cycle of tiredness and worry. Like you I haven't even been diagnosed, although my symptoms have been arund for quite a while.

If you are looking for a positive story have a look at the post by Wing42 about "Reversal or improvement of your PN!! (success story's)" towards the end of the page, I can't post a link because I haven't made enough posts.

I'm sure a glass of wine/champers won't hurt especially if it helps you to relax.

I'm curious are you in WA, as I'm looking for a neuro and haven't had much luck

Best wishes for your birthday

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

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