I am hoping that one of my fellow PN'ers with some hard PN knowledge will comment on my dilemna.

Something has been bugging me. I am coming up to the 2nd anniversary of the onset of PN symptoms. Just to refresh, my PN hit my eyes first. It was prickling & burning in eyes for about 3 days or so,and then moved to the head area for another week. I was having months of sudden 10 second pounding headches. It was as if someone cracked me in the head with a hammer quickly, and then the headache went away after 10 seconds or so. Basically I was having very bizarre things in the head region.

Then the PN moved downwards to chest,arms,hands,and the rest of body. I am a bit fuzzy with details from there, as I never really kept notes.

Well I have had alot of improvment since then, thank God, but I still feel very weird in my head. I feel like my head is really stuffed up, dry,inflamed, and fuzzy. I have mentioned my eyes are dry and painful. It also feels as if my brain is really dry or something and I feel a daily low level heat or inflammation in brain area.

My MRI was normal as was a CT scan & EEG. I have had massive amounts of blood,urine, & immunology testing all come up negative.You know how people say that when their BP goes up sometimes they get really hot and or flushed. When my BP goes to say 130, I notice immediately because my face will start feeling warmer, even though that's such a minor change. I know it sounds odd. At 140 or so, I feel ravaged like my head is on fire or something.

But all these feelings of pain, and oddness I mentioned earlier happen even under normal BP conditions,as my head always feels very heavy,painful and fuzzed up.

I know this all sounds odd but does anyone have any ideas as to what might I do? I am not taking any meds except BP meds,and this all surfaced before I started on BP meds, at onset of PN.No doctors have any explanation as of yet. I have a normal-high ESR and dry eye syndrome and that's basically it.

Any and all opinions are much appreciated.

Thank you

I hope it's a strange sign that you are continuing to repair. I haven't experienced exactly those symptoms, but many of my symptoms were equally strange and alarming, and many became much worse (or much weirder) prior to great improvement in those areas. This over a period of years. For damage like mine (maybe yours?), two years is a short time.

Of course, I have no way of knowing. And, naturally, looking at other possible causes of your weird symptoms is always a good idea.

rose

I hope it's repairs as well. But it is so concentrated in the head region that it keeps alarming me. I just feel like my brain is drying up or something like that. And I feel hot,although I take temp and it's always pretty normal.

But once again, thank you for your comments.

--is that this may have something to do with damage--or ongoing repair, as Rose mentions--to the smaller fibers that control autonomic function.

In addition to subsuming the sensation of pain and temperature, the smaller lightly or unmeylinated fibers control nearly all the autonomic functions in our bodies, from gastric motility to blood pressure to sweat response to tear production. And a lot of people who suddenly feel weird temperature changes may be getting erroneous signals both from nerves that sense this (i.e., feeling heat when there is none objectively in the surrounding atmosphere), and from nerves that would respond to an actual change in heat, such as the sudomotor sweat signallers. In fact, there is the theory that the hot flashes of menopause are due to the response of these nerves to sudden hormonal floods. (Don't know what age you are, but some of those symptoms you describe sound suspiciously similar . . .)

Given that you had an acute onset with this whole thing, and people with acute smaller-fiber syndromes often have related autonomic dysfunctions (although they are often "subclinical" and hard to pinpoint), it might be a good idea to see if some autonomic testing would be available--have you ever head sweat testing (sudomotor axon reflex testing), or tilt-table Valsalva maneouver testing?

had some similar, tho not as strong experiences...

Just prior to my emphatic onset [about 6 weeks prior] I'd had noticable vision changes which in one month changed back. Two years later, the same thing. Added to that were vision fade-outs [for want of a better description] on and off for a two year period. I'm approaching the four year mark of my 'whatever'. I had headaches, at times concurrent with IVIG, but, I'd always felt the headaches were caused by the therapy, the vision issues were often w/o the aches.

I was lucky in that I was referred to a real neuro-opthamologist. In addition to my original work-ups for diagnosing my neuropathy, I got a whole brain and cardio assessment as well. The offshoot of it all was something called a 'non-aura migraine'. Since there was no pain w/the 'events', not a whole lot to do or treat. It can and DOES tend to set off all your internal 'Red Alerts!' tho. And, it's very hard not to react in a panicy fashion...but, you HAVE to not react! By doing some breathing and visualisation techniques, it can ease the 'events' and your overall well-being a lot. Sounds silly, really, but it DOES work! All I can say is that I think I've sort of gotten a good number of those whole workovers piecemeal that folks get going to someplace like the Mayo-it just took longer?

The only think I can think of is to keep mentioning it all to your docs at each and every visit, not as a #1 concern, just one of your several ongoing issues. There will be that ONE time that it will register in your docs' minds and they will actually do something!?

Super hugs and good thoughts for the interim! - j

Glen, I have had all autonomic testing come up normal. I actually see a small fibre specialist who performed the sweat test,tilt table,valsalva and all nerve conduction studies. Ironically thet were all normal. And I remeber her saying that my bororeflex is working, but there is "subclinical sypmtoms that are hard to catch. I also sweat normally from everywhere she said.

I have gotten the diagnosis of "monophasic autoimmune PN through molecular mimicry"

But the fact remains that there is something going on in my head, probably from damage or healing,and it produces heat,and I get flushed for no reason. When this happens I also get anxiousness come over me very quickly,and I have to find a quiet place to practice my breathing.

NORMAL?????I was sure it was 'x', 'y' or definitely 'z'! Well, we can always hope?

I dunno, at times I think/believe it's our MISSION to stumblefumble these docs and plain old humble their egos! [etc.] Shucks, it's not like we ASKED for all this 'stuff'!!!!!!!

What does IT all mean? Well, you great 'brains' have excluded all this 'stuff'....what about all this 'other stuff'?????

Do not EVER let them sit on their exclusions....the neuro profession SHOULD be that of processing the dratted EXCLUSIONS....and then getting to that elusive animal called diagnosis?

Do I have to 'e'mail you my solid OAK 2x4? Somehow I think you may have enven harder woods in your 'hood'?

Go get 'em! - HUGS - j

Hi Aussie, Seeing all your blood & other tests all show negative, but you continue to improve as time goes on, then its probably fair to say that whatever has caused your nerve damage is well gone now buy the looks of it, may have been some sort a virus perhaps ??? that has made your immune system go hay wire, causing damage to your small nerves, as you would know we can get some really weird viral strains these days that can become that serious to cause some people to be hospitalized, compared to years ago it was just the same old flue symptoms every year, but i think that has defiantly changed over the years.

Increased burning is a typical sign of small nerve repair, thats what i went through whilst healing, there's no set pattern they can start burning at any old time, and the flushing could be your systems response to when your burning starts which would cause anyone to become anxious.
I hope it all settles down for you soon.

Brian

Geez, I am just happy to get it off me chest. It's been on my mind for the longest time,and I finally broke down and asked.

I appreciate the support.

I ask this because antibiotics in the fluoroquinolone class can sometimes have side effects that are similar to what you described and can last for years. Cipro, Levaquin, Avelox are just a few.- P.N. is a side effect that can be irreversible. cipain