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

extra aches and pains just reading your history!

May I ask what meds you were on to treat the bronchitis and h.pylori? Could they have contributed? Aside from the supplements, are you taking prescription meds other than those for the anxiety & hypertension?

As for me, it's been a while and I've got to look up a couple of tests before I provide all w/my story. By comparison, my is rather bland, except for the misdiagnoses initially.

I'm glad you've never given up tho. Yes, autoimmune neuropathies I liken to a misprogrammed immune system-essentially one that has a breakdown of the proper defense circuits.

As for having half a life. Don't think of it that way, just think of it going in a different direction....while not the one you'd planned, it's the road you have found yourself on. In my case, I've met ever so many wonderful and interesting people, both here and thru the places my diagnoses and treatments have taken me. If not for all of this, I believe my life would be duller lacking the experiences.

Hugs and wishes for a heap of pain-free moments! - j

I am virtually pain free most of the time now,that is why I beleive to have recovered from the pain aspect of the PN. I used to be in terrible pain, almost lke I was set on fire. I had sparks flying 24/7.

I am not on any pain meds since August when I stopped the Tryciclic. I am actually doing alright except for the on/off insomnia and anxiety.

I am also in the process of adding 2 more supplements,but I am just waiting until the first Tuesday of December to go get them,because I am in sort of a vitamin club,and I get large discounts on the first Tuesday of every month.

It is true that I have these other issues at the forefront of my medical complaints,but my PN is majorly improved, I think the B12 helped me alot,and as did the Acetyl L Carnitine all that time I was taking it.

Do you think that my PN history was that frightening?

I only remember how 2 other people got PN on this Forum,so I thought it would be a good idea if we could share the history and hopefully the success, even if minor.

After a month or so with Bronchitis, I took some left over antibiotics I had. I only took 2 pills though, and never made it past that as PN came on, and I stopped taking them.

Have a great day.

Aussie

Wellll.....................It started with burning feet, around 1996
My doc said "bathe 'em in epsom salts"..............then aching, squeezing pressure pains in my feet.
My doc said to 'get off' my feet. (uh, how do I work?....doc didn't care)
Then it was ...."what can I take for my feet?",
Doc said take a coupla aspirin or Tylenol, or Motrin......
Soooooo,....... I took bourbon, sour mash, on the rocks.....then Vodka......neat. After I self medicated myself into a stupor, I woke one day and didn't feel too good cause I couldn't get up.
I was so shaky from consuming a quart of vodka a day for so long, that I had to be hospitalized (1999-2000).
"Pancreatitis", they said.........oh, and BTW - my feet hurt,
so I told them so - and they came back with .......
"oh, and BTW- you've got PN. We'll start you on gabapentin".
After a week and a half of the hospital and almost 3 weeks of rehab in a nursing home - they sent me to a halfway house, did a jailbreak after about 18 hours & had someone come get me and take me home.
2 more weeks of recuperation and I was back to work.
Sooooooo........I fired my doc.
Changed ins plans got a new doc, fired him,
got another, fired him,
changed ins plans, B.S.'d my way into a good neuro's schedule
(took almost a year to finally search, find, and get the appt) and got a new doc (PCP- PPO plan) and she was a winner (still have her).
This only took sbout 2 yrs (6 mos of which, I had no health ins - at all! (another story......later)
My neuro saw my history and my pancreatitis 'bout' and promptly claimed 'alcoholic PN' (remember the burning feet before the bourbon?)
Sooooo, I have"axonal sensory polyneuropathy of length dependant nature"- cause, 'alcoholic abuse/alcoholism' (duh !???) and can't get that out of my Dx and charts.
Today, I have more severe PN than it was in 1997 or even than it was in 2005.
But its under control with Lyrica (600mgs/day), Tramadol (400mgs/day) CoQ10, ALA, Folic Acid, and of course 1000-2000mcg, sublingual ,Methylcobalamion B 12.
Now I'm 62 and working primarily to pay for my med ins (its going up $82/month, to $625 - in Jan) for an individual plan for self employed. (They don't even offer this plan anymore- I'm 'grandfathered' & no one offers any plans for self employed, so I can't shop for anything better- there isn't any ! - 3 more years - and Medicare, here I come)

May I ask how much the health insurance costs per month? In America, if you are sick and go to emergency, will they treat you or turn you away if you have no insurance?

Regarding the diagnosis, I remember when one highly paid & trained neuro told me I suffered PN from migraines,and migraine is the cause of all my pain. I looked at him and started to cry then laugh!

Wow, jailbreaks and everything.

I think you should write a book about your life.

The title should be 'NEUROPATHY, BEFORE BOOZE AND AFTER'

Don't ya just love it???

mel