Evolving of PN??
 

I'm starting to have more and more 'prickling' days where instead of burning arms, legs, face etc. the sensations are more of a prickling nature (hard to explain!! :)). Each time the 'prickling' crescendos, the fatigue in me also rises and I feel totally drained. Is this common?

To be honest, I'm not sure. But I've noticed that the prickling sensations feel better to me than the burning...

Strange isn't it? Even though the burning is not nice the prickling sensations seem to be of a greater intensity than the burning for me. I feel totally exhausted again! The shooting electric currents in the feet were also out in force today.

Could be progressing; could be repairing.

Wish I knew. :confused:

rose

me too
 

My PN came on all at once in April ‘04.

I had been under a lot of stress (long time wife dumped me). Then the sadness/worry just kept coming from all different directions. When to the Dr about the PN and was told “your kidneys are not working right”. That tossed in yet another panic - turned out to be wrong but I almost killed myself trying to cut down on protein. Then the only friend left in my life (my mom died).

Three or four years of total bad news after bad news - in my opinion added to the PN and may have been a major cause of it in the first place.

My burning - buzzing - prickling goes and come and goes and changes and comes and changes and gets worse and gets better.

While I use to be able to say “hey maybe it is repairing” - the fact is .... overall it is getting worse.

Fatigue.

The one thing that is consistent regarding (PN related) fatigue (for me) is sleep. Lower amounts of sleep crank up the PN.

I keep forgetting that until ..... until I have a low sleep night (the PN does not cause lack of sleep - stress of it and aging and worry does) I get a very blatant reminder.

Welcome
 

I just wanted to welcome you. I don't have much medical knowledge about anything but Sjogren's Syndrome (an autoimmune disease) and Rheumatoid Arthritis (another autoimmune disease). But one of the things that comes thru even to my level is the extraordinary sadness in your post. You might benefit from some counseling or something to medically intervene with depression. I read your post on Finney's post and felt I couldn't post again in that thread, but I did want to welcome you and let you know someone cared.

I don't know you. Maybe it would help us help you (if we can) if we know what tests, background etc. you have.

Billye

Is your PN symptoms confined to certain areas or widespread?
 

Megan, I was just wondering if it your symptoms started in one area and then slowly spread or if it quickly evolved to other areas? For me that particular sensation is really irritating!

Julie

HiYa Silverlady ...

If that was to me .... I am fine. I made it through all of that sadness.

Regarding this thread - I just wanted to say “don’t forget about sleep”. In my case 4 hours end up bad on my PN. Five hours is about midway. Six or seven hours and my PN don’t object.

Regarding that other topic - it may or may not be helpful to hear from just an observer - that has three years observation experience.

To Ron and Julie
 

Hi Ron,

What a terrible time you had but so glad to hear that you have come through that sadness. Like Silverlady I was wondering what tests you had done for your PN. Your three years of PN observation are certainly appreciated as there are people here including myself who have had more recent symptoms and are wanting to learn as much as we can to try and make sense of what is happening to us.

For me sleep needs to be more like eight or nine hours - always has been. I must admit the #%@^ internet can tend to tempt one away from getting to bed at an earlier hour....so I tend to get up later - not good!

Julie, the burning started intensely in both my lower legs (not feet). I had it a few days off and on last year and was puzzled by it, but it was not until June 2007 that it became everyday, then in July it became everyday ALL day. Early August within one week it advanced to above my knees to my hands/fingers, arms, cheeks, chin, feet. At that same time (early August) I was quite ill with nausea, epigastric pain, extremely heavy eyelids, extreme fatigue and lethargy so my GP sent me straight to the hospital suggesting possible Guillane Barre. The hospital sent me home when my reflexes tested fine. I remained unwell for nearly two months.

Although I am having some good days now I have overwhelming fatigue overcome me frequently. I still am getting new 'spots' where the burning develops like the side of my neck - most recent. I'm now also having more electric current type sensations, although the fasciculations seem to be a bit less frequent now.

I still haven't been checked for Coeliac Disease nor had a Glucose Tolerance Test done, QST or skin punch biopsies - so these are my next eliminative tests.

Megan
 

The symptoms you describe would suggest that you also had some autonomic disruption with your PN. Especially the gastric and nausea, and also the fatigue I beleive too. Not necessarily autonomic PN, but some autonomic dysfunction. I have terrible reflux at time,and my intestines squirm around like mad. I also had a spasming esophagus which was a very hard symptom to deal with. Sometimes all 3 at once.

It sounds autoimmune in nature, and the eyelids made me think of Myasthenia Gravis. I hope you are feeling much better now, and Brian was able to direct you to a good neuro in Melbourne.

Alot of people with PN have fatigue. As a matter of fact "fatigue", is most often a symptom.

Thanks Aussie99,

Brian did direct me to a neuro in Melbourne who he has found to be competent. My appointment is in December. However I have been called up twice in the past week when cancellations came up at very short notice but was not able to avail myself of either....so hopefully third time lucky! I'm carrying around my referral and results folder with me wherever I go, as well as, my mobile stuck in my belt or pocket so I don't miss any calls from here on!!

Yeah I've wondered about some autonomic involvement. When I mentioned that to the first neuro I went to, she said " oh no, you would be having postural hypotension". Well for starters she didn't ask me if I was having any postural drops (which I have had for many years because of my salt-losing adrenal condition), so that was not something I would have mentioned to the neuro as it's part of my life and not a new symptom. From my reading, autonomic effects can be a range of things and not necessarily in a preset order with postural hypotension being the first on the list!!! So I didn't understand her closure on that subject.

I'll look up Myasthenia Gravis when I have a few minutes. I'm currently brushing up my knowledge on Coeliac Disease and learning heaps about it and the testing required. Even in the past ten years big advances have been made with Coeliac diagnostics and understanding, especially regarding it's prevalence in adults. Also Coeliac Disease's relationship to B12 deficiency. I'm assuming everyone who has a B12 deficiency diagnosed (especially when younger) eg. under 60 years of age is getting tested for CD!!!!

I do hope that you have had no more episodes of the Trigeminal pain Aussie99. I'm sure you are quite tentative about having a repeat episode!!!!:eek: Sounded horrible!

You are right Megan
 

a disruption in the autonomic system can present as anything. It is not 'Classic autonomic PN', but more like dysautonomia.

No more episodes of TN as yet. (fingers crossed):)