Hi folks. Havent posted much lately - first got major case of flu with high fever that flattened me for weeks in December - then stomach flu righ after that which still seems to be taking a toll, and I dont know what else but still feel very sick and weak....

Couple questions - the only places I've been since beginning of December are docs - have a new "team" - they are very good and each trying their best to address their specialities... the GP has referred me to an actual motility specilaist in my area - which is very rare - and he knows his stuff - we have very few options left though on meds which I'm now trying (have gastropareiss due to autonomic PN) - I'm trying new meds and have continued to loose weight - getting kind scary but Medicare wont hospitalize someone unless I show severe malnutrition and I'm not at that point -just drastically losing weight and very weak. I can't even tolerate acid blockers which prior to PN were not an issue at all (Proton Pump Inhibitors could not tolerate before PN) The next step the doc wants to try is a gastric pacemaker - anyone with autonomic symtoms have this done??????

Saw a pain specialist for my back yesterday - he spent a great deal of time going over the adverse drug reactions I've had (which shows me he's going to be very diligent in this area) - wants to start with steroid injections which he's even hesitant about because we dont know what will happen with the med.... but at this point we've got to try something because one needs to be able to sit up to function....

See new neuro next week - hoping for a complete evaul (hopefully this will be a good thing - need to start IVIG again but have to get gut in better shape first)..

Since PN onset - have any of you had a drastic increase in allergies to "stuff" in general???? (I had testing only once in my life for allergies, right after I got PN, and had reaction to about 80% of everything tested for, and to top if off went into shock after the testing - the doc refuesed to give me allergy shots cause of the risk) Would this be typical for an auto-immune PN? How about mediction tolerance? And recovery from the creeping grunge (the flu or???????) If so - how have you dealt with this?

I know there are lots of questions here - but hope maybe a few can shed some light.... I'm fighting as hard as I an to gain some weight and get stronger - but keep making myself sicker

Hi Kmeb:

Sorry you are having a round with the flu... In our area, the docs were pushing flu shots, except that they did not help with most of the strains that hit...

If you are spending a lot of time in doctors' offices, think about getting a couple of those disposable masks to wear. My Internist's office was loaded w/sick people... Most were NOT wearing masks...

You asked about the sudden allergies. Here are some of the things I developed allergies or sensitivity to:

Tape, as in surgical tape, skin came off when removed, left big blisters
Some anti-perspirants: itching, burning and numbness up/down arms
BenGay:burning all over
New car upholstery
Extreme sensitivity to fragrances, cleansers
Medications I never had problems with before
Some food sensitivities
Clothing: some makes me turn bright red on face/chest

The only thing I was ever allergic to before was Sulfa, which caused a rash.

Perhaps there is some unknown nervous system involvement in allergic reactions.

Hope you get to feeling better.

Cathie

You know to get those liquids down,..right?? I know it is very hard for you but perhaps broth.

It sounds as if you have some proactive doctors now. I hope they will be able to help you. I've never heard of a gastric pacemaker. Have you researched it?

http://www.medscape.com/viewarticle/460632_2
http://docsurg.blogspot.com/2005/09/...roparesis.html

Good luck and feel better.
Billye

And in many ways that IS one really bad pun!

Before PN I was allergic to sulfur [but not sulfa?]
Allergies to molds and pollens, but not lots else.

Now?
Like Cathie, the adhesive tapes [some kinds] get a deliteful rash! HIVES
Any rubs or salves with menthol, eucalyptis or alchohol. Just extra burning.
A newer moisturizing agents in some oils and creams called 'sunflower seed extract oil'...according to the FDA in pure form it's toxic....again ???-HIVES was the reaction.
SSRI's - throw me out of commission for a week! Not on this planet.
Detergents and even cooking oils...have to wear plastic gloves. OR burning hands.
OH! Those perfumes! Be near a person with too much? Almost pass out! Eyes water and close...breathing becomes difficult?
Possible reaction to MRI constast stuff - Hives again...get tested next month...this is to me, a critical one! Hope I'm not allergic.

Billye: Those were good finds, I think.

Kmeb: I can't speak about flus and the like [knick wood quickly! PLEASE!], as I've been on a consistent IVIG schedule. I also seem to be missing all those able to share in whichever doc's offices I go to! I've escaped this problem so far this year, but plan on being a zealot next year for sure. After all-It was pneumonia that gave me this neuropathy!
Wearing a mask, or, at least bringing it along might not be a bad idea. I used to receive my IVIG infusions in the hospital [on the cancer floor] and lots of nurses and patients did wear masks there!
I hope this helps 's - j

Thanks for input guys - on allergies -sounds like those of us with auto-immune type PN do have this happen - although I have no idea why (my neuro didnt offer any explanation at the time I had the testing done - but I went into the allergy testing telling them they were wasting their time cause I was knew I was only allergic to two aninals and two medications) - surprize.... it has to be related....

Billye - that is a good site on gastric pacemaker - gastroparesis is most normally associated with diabetes (I dont have diabestes - its definatey from the autonmic PN and non-diabetic PN) - and its often questionable on which type of neuropathies it will work for - and getting isurance to pay is yet another issue because of this.... (also, only drink liquids anyway but its getting tougher to get anything down - if only I wanted to loose weight)...

Curious to see if anyone else with a diagnosed or not auto-immune type condition has any symtoms?????? Also, I know a few of us do have autonomic PN - what types of PN do you have?????

Dear Karen,

It's good to hear from you. I'm inspired by your courage, perseverance, and grit. You might be sick, weak, and losing weight, but you're a hero to me.

Regarding allergies, I'm quite a bit less allergic than when the PN started. Back then, I reacted to my cats, dogs, dust, poison oak big time, and many pollens. Now, not much seems to set me off sneezing, itching, or with contact dermatitis. It could be all the immune balancing and anti-inflamatory supplements I'm taking and my very healthy diet. I know you can't tolerate most supplements and veggies, but I'm mentioning it for the rest of the group.

BTW, included are two pictures of our new dog, Rusty, and my wife. Rusty was 35 lbs. when we got him 2 mos. ago at 7 mos. old. He's now 50 lb. and has filled our home and lives with fun, love, and joy. He was shipped from a no-kill shelter in Mississippi to a shelter here in San Diego. Only in America would we ship a stray puppy 2,000 miles to find a home. I hope we grow to treat each other with as much love and compassion.

Take care.

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	Rusty.JPG (83.6 KB, 100 views)
	Rusty 1l.JPG (146.5 KB, 97 views)

--anecdotally, at least, there seem to be an awful lot of people out there with multiple allergies who get suspected autoimmune neuropathy.

Of course, there are a lot of allergic people out there who DON'T get such neuropathies. But I wonder how many/few people who are not generally allergic develop such syndromes, or, indeed, develop any autoimmune conditons. My supposition is that people with "reactive" immune systems--which may well have conferred a survival advantage in the past--have higher rates of these things than those who don't have such reactivity.

Of course, the problem now is that there are so many more things in our environment to react to, chemically, than there were a few centuries ago. It's very much like Type II diabetes--the tendency to store fat, a genetic advantage (to make up for lean times) for much of our evolutionary history, becomes a disadvantage when modern agricultural methods dump cheap simple carbohydrates on our plates, and we don't have to engage in the rate of physical activity our ancestors did.

David:

Here are come cyber puppies for your Rusty. He's adorable by the way.

Hi Karen. Hope you are feeling better.

Some allergies aren't puppies?
Some as in my own case and seemingly in Kmeb's they can be downright dangerous.
Have I lost my remote? [Or, is that just a 'cancer' thing?] - j

I don't get your point. The puppy pictures were to lighten things up a bit and hopefully give Karen a smile. I think she needs some lightness and smiles to help her cope with a very challenging situation. Nobody suggested that she should get a puppy any time soon.

The "remote" and "cancer thing" line makes no sense to me at all. Can you explain.