I was recently inspired by Brian to start this thread. Due to the fact that the old forum is gone, I have been finding it difficult to remember how everyones PN had started, progressed, improved, and what actually worked for them. Also I thought we can include what supplements worked the best,and any other useful hints or tidbits to share. Hopefully also to inspire.

I will start with myself ofcourse.


Ok, my PN started when I was 32. Right prior to it's onset, I had really bad bronchitis,chest infection, and although I did not know it yet, I also had a chronic gut infection with H.Pylori bacteria. It started on March 2005 on a very hot morning. I was overdressed, and I started to sweat alot and within minutes I had the most horrible burning feeling in my eyes. My eyes continued to burn for 3 days or so,and then my scalp started to burn intensely. Then I got parathesia in my face,and all over my head. Within 10 days my whole entire body had parasthesia, but the progression was eyes,head,arms,trunk,torso,legs,feet.

I ofcourse was hospitalised,all bloodwork was normal,MRI normal,all reflexes and strenghth normal. At that stage I was a medical enigma, and bounced around a bit from doctor to doctor.

After about 4 months of this, I then started to develop the first signs of autonomic problems. Though once again, I have passed all autonomic testing including tilt table, breathing, Qsart,sweat test, and nerve conduction studies. It was then suggested that my autonomic reflexes were in tact, but I had a bit of instability which presented with acute sympathetic activity.

This is the tricky bit, because I then started to get anxious and panicky over this over sympathetic activity, and then showed signs of agoraphobia & panic which presented in the same way as the excessive sympathethic activity.

Well I was put on a Tryciclic which caused me to put on 13 odd kilos, and I also now take Betaloc & Atecand for labile hypertension & anxiety attacks.

I have had every bizarre feeling imaginable in my body over the last 18 months, but can honestly say that my pain is at least 70% better without drugs. I have had 3 diagnosis thus far. The first is complex migraine disorder, the second is transient migrating neuritis of Wallenberg, and finally the small fibre specialist beleives that I have had a sort of variant of Guillian Barre, and has labeled it monophasic autoimmune axonal polyneuropathy due to a process of molecular mimicry. Essentially this means that back when I had my infections, my immune sytem mistook some proteins in my nervous sytem with protein invaders, and attacked my nervous sytem by mistake. This is supported by the unusal presentation & progression & also the ongoing recovery. I was pretty much disabled for 4 months or so, but suffer ongoing disability due to the autonomic instability.

This essentially means that I am living only half the life I was before, and pretty much have not really been social for the last 18 months. I have kept to myself alot and have become a bit of a hermit.

I suffer ongoing fatigue,insomnia,anxiety & labile hypertension. These are the things I am working on now, as well as trying to loose the 13 kilos I have gained.

I know I am recovering ever so slowly, and really take it day by day. The supplements that have worked for me, and I have tried many are the following

Fish Oil/Glucosamine
Magnesium
B12
Folic Acid
Calcium
B complex
E
C-of recent times

I was also taking Acetyl-L Carnitine & CO-Q10 and other expensive amino acids and such, but I had to cut down a bit. I am always looking for something new to add but I also need to be able to afford it on a regular basis.

I'd also like to mention at the onset of my PN, my B12 was on the low side,and I had iron anemia with microcytosis,hypochromasia,polychromasia, & elliptocytosis. MY ESR is also raised 26-30 on a scale 0f (0-16). My biochemistry was a bit off too with lowish blood urea,bicarbonate & creatinine.

I'd also like to add that I have improved alot since my early days and part of the recovery had ben the supplements and I also beleive keeping active. I think itr's important to have support and encouragment, and see each day as an adventure rather than a dread.


Well that's pretty much my story, thank you for listening and I hope other's will also share their experience.

Aussie