Drug Sensitivities, the Flu, and PN?
 

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:confused:

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

Kmeb
 

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

I too have become more 'sensitive'
 

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 :hug:'s - j

More Stuff
 

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?????:confused:

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.

While I don't think this has ever been put to a scientific survey--
 

--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.

http://dl9.glitter-graphics.net/pub/...wx53hduhsn.gif

thing is
 

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.

David, nice healthy looking dog but your cat on top of the wardrobe made me laugh, wouldn't be half jealous of the attention the dogs getting :D:D

Brian :)

Well, I think I am the lone ranger with autonomic neuropathy and no autoimmune markers (yet), no cancer (yet), however....no one can get near me with tape and stuff that sticks!

I don't even want to describe what my chest looks like after a month of wearing an event monitor, and they gave me pediatric electrodes. (Don't laugh, I can hear the remarks now...:p)

five minutes of a band aid on and it looks like a second degree burn....once they left some leads on me from a 12 lead EKG and I found them the next morning and removed them....two weeks later I went to the doc and need prescription cortisone cream, and the scars were still evident 6 months later...

I do not like anything aerosolized....cleaning stuff, good smelling spray stuff...I get watery, itchy eyes for days.

I am sure I am allergic to stuff. I am getting leery of latex, but had a ton of exposure occupationally and personally.

SSRIs, no antidopaminergics, no anticholinergics, and problems with anesthestics....not much I can take....what I can take they don't like to give out...hmm

Puppies are cute and I am a sucker for any animal, except party animals.:p Hubby is allergic to animals, so we have no carpets, and little fabric as possible and a kick behind HEPA air cleaner that roars like a jet....oh, it also catches viruses and I think given this nasty flu going around, it is going to be running a lot.

Oh and my old computer crashed, I think terminally....I am on a borrowed Mac, which is heavenly ..good old Norton 2008 did it in, for good I think, unless I want Vista....I may have a new love named Mac. This thing is awesome.:D I think I have an 'intolerance' to my old PC...and it DID make me ill for 24 hours of horrible stress....I do not even want to look at that dinosaur now.

Kmeb----call that doc---:hug: You have to get feeling better....Enough already!!!! Tell them you can't take anymore!!!

I am going to go to bed and try to untangle my body from the conversations I had with several IT people, who DID make sense to me, which worries me. When IT people make sense to me, I need to proverbially flush my cache.

Aha! You all are making me think about all of the things I have forgotten about reacting to.

When I was in my late teens, I did have a severe reaction to the green dye in wool pants. I swelled up all over and got a nasty rash. Maybe that was just an early warning of things to come.

The reaction to Radioactive Iodine in a Nuclear Thyroid Scan was another memorable reaction. It set me on fire all over.

New carpeting burns my nose and lungs...

Cathie
P.S. David-that was such a nice rescue for the puppy... That cat looks like he is checking things out from a safe distance...

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Its interesting to hear what people react to! Before PN I was only allergic to a couple of critters and meds - like I said - but now if someone even opens chemicals, cleaing materials, etc ... I'm about to check out and end up on the floor (and I used to work in darkrooms up to my eyeballs in chemicals and with lots of other chemcials furniture finishing, painting, etc)... the allergy testing I had showed tons of pollens, dusts, molds, etc allergies etc.... that I had no idea about at all.... and now - yes - even tapes - those leads for the heart monitors are killer Cyclops, they leave welts for a week (I've used the kid super senstive ones too and last time had a month long event monitor it was portable with no leads and just held up to my chest when I could feel arrythmia - took short 30 second reads - then I'd transmit then by phone to the company who had a nurse analyze them on the spot - same as you though - they can see the irregularities in the very short runs and beats etc... but never caught the super long (like 45 min) tachys cause theres never a monitor around then - that would be too easy!)

Brian - I dont know how you saw that cat glaring at Davids pup - good catch! He doesnt not look happy! But as another "adoptive" mom to a critter who's life was existing in a no-kill shelter for over two years before I literally found hin on the net - yea to all of us pet Moms (and Dads)! (of course - they do own us you know)..... (my adoptee is below-they failed to tell me half feet)

Billye and Cyclops - been following orders and drinking fluids! I think I"m holding right now at current weight - see new neuro Tuesday and of course will have her coordinate with GI and GP so maybe they will all begin to get the clue!

I'm going to try to find out more info about rections - allergies - etc and PN - sounds like an interesting topic and maybe a clue somewhere to helping us??????

Oh - one more thing - anyone watching the Oscars tonight - dont let them fool you if it looks warm and beautiful - its NOT - I'm not that far from the theater and its COLD (for here) pouring all night - and downright ugly....!!!! Be glad you wont be walking the "red carpet" cause you'd be one very cold "star"!

:eek:

Kmeb:

I'll be watching the Oscars. Let's all imagine we are in one big room, with a big bowl of popcorn (I can't eat it, but I can make believe), and we are all watching the Oscars together.

We'll be going oooh and aah, everytime some famous star comes on.

I still cannot believe that Angelina Jolie is having another baby. How on earth does she do this and still act?? Amazing.

Melody
P.S. didn't mean to hijack this thread but topic of oscars was being discussed

Brian - I dont know how you saw that cat glaring at Davids pup - good catch! He doesnt not look happy! But as another "adoptive" mom to a critter who's life was existing in a no-kill shelter for over two years before I literally found hin on the net - yea to all of us pet Moms (and Dads)! (of course - they do own us you know)..... (my adoptee is below-they failed to tell me half feet)

Karen, just by double clicking your mouse on the image enlarges those pictures, i am also another adobted dad of a feline thats around 19 years of age now, i originally found her in a lost dogs shelter [of all places] :)... & yes, they do own us.
take care
Brian :)

Brian, you have a cat that is 19 years old???

I never knew cats could live that long!!!

Yes Melody, besides a bit of asmatha she is in good nick for her age, still got a very good appetite, refuses to eat any cat food in cans she will only eat what we eat, smart cat i reckon :D

Brian :)

Cats and allergies!
 

Brian, that you have such a grande old dame of a feline is truly remarkable. That such beast has 'trained' you so thoroughly is a testatment to you both! I acknowledge this because I have been 'trained' by MASTERS!
I'll post later with THE book written ostensibly by CATs on how to train us. It is classic.

More later gotta go now - j

Karen
 

Just read Cycleop's allergies so I don't have to repeat..Oh and the famous
vaseline That the smart Dermatologist,said why it's so rare that people
are never allergy to. Whice peeled the skin on my legs for 3 layers,which
put me in hospital and to the wound and burn center in unaboots for the
the hot summer.. Going to that clinic was humbing...

Well you need to be on a IV with fluids,dring tons of fluids is a must..
I started with Glucerna,worked my way to baby food,now that didn't
work so a little broth and Glucema..

We had a Darkroom,my husband's hiding place,then mine,honest I never
thought of the Chemicals...And I stripped furiiture and painted for
extra money,was I really carefull,no not like I show be..I often wonder
about the ex-rays in ER.

Karen you know I will e-mail you and fuss,but I want you to know
your are my HERO and such a good friend...I'm at the point where
eating will be hard,but you go throug this far more then any of
us,although the saminelli for 4 months oh gezzz..:eek::eek:

You must get better ,so we can go along the sand with are hair blowing
in the wind,say hey to Bax..

David you dog and cat very nice your wife lovely....Hugs to all Sue

My sons are on there way homeplease pray for safe trips,it was wonderfil
but i'm tired,a good tired.:):):)

Here is a site....
 

Once you know how they think about it...the rest is easy?
http://cgi.ebay.com/The-Silent-Miaow...QQcmdZViewItem
It is a classic that's getting harder to find. It's an interesting read, BUT! Just don't let your cats read it....I can testify that my beasts started to do things if I'd left this open that they NEVER could have thought of themselves...and that includes turning pages!

Back on topic? Kmeb, please try and get as much in the way of fluids down you! Dehydration can be a sneaky and nasty thing.
As for F/U on the allergy stuff? I've made a new appt w/my allergist to specifically check out the 'contrast' issue. IF I or anyone who gets a reaction and HAS to have a contrast in an emergency...without knowing IF could get even sicker! Honestly IF I can find out now, better than later. It's not a nice, rather a scary place to be.

Sue? I know what you mean about the chemicals. Used to garden and apply all the nasties that are now forbidden. Also did some jewellery work that used chemicals..some of the stuff was, well, beyond nasty. The pickling solutions mainly tho...that stuff would get on your hands and they'd be GREEN for a long time!

Hugs to all! - j

Oh, yes. Our first black cat lived to be 19.

Now we have a second one... she is not very active, but she is almost 19 now.
She was 16 years ago at the vets when she had some issues, but now she seems to have hit one of her 9 lives:

This is my husband from this summer with Tippy in his lap (15 yrs old) and Sheba the Eldest (19+) to the right. They are on our dock, and behind my hubby to the left is the path up to the house. Some of the rocks around them are visible, all that I have rearranged from what nature provided. It is all rock there and hard to navigate, esp with PN.

Oooh... You all have such beautiful cats! Sooo pretty and they all look so well taken care of.

I wish I knew how to post pictures of the Yorkies who own us. One of these days... :) :) :)

Cathie

I'm really glad to see you posting, but sorry about all you go through. But you've got spunk and keep going, and that's admirable.

I'd think the gastroparesis support groups would have people who have had experience with the gastric pacemaker--what's the consensus there? My guess is anyone here with that severe gastroparesis would also be on a gp site.

YOu're not allergic to your cat now, are you? That would be awful.

And More!
 

Good to see everyones critters - and thanks for the suggestions and good wishes (Mrs. D - your "kids" are beautiful)...

On my gastroparesis group - they are helpful regarding proceduress and just how bad this disease can get, side effects of treatments, etc. - but very few cross over to the PN category - which is one of my concerns right now as far as treatments that may or may not work.... (ins. only pays for pacemakers for certain diseases - most people there have gastroparesis from diabetes, post surgical, the famous "idiopathic" but extremely lacking in true autonomic pn and pn in general).... they are dealing with the gut issues but for most part not the mobility etc that the PN has created..... :eek: (which is also why its critical to deal with docs and people who understand PN)

LJ - Re the pacemaker- some people in the gastroparesis group it works for - others not at all... and ins companies dictate who can and cant get them in the first place.....

I find it interesting again that while many of us on this board have PN - it has so many different presenations -and again stresses why its important to find out a cause if we can... why the allergies for some??? Why are only a very few of us dealing with autonomic symtoms??????? Why can some of us function at such a high level, and others, with the same drive and determination - struggle so hard to even ambulate... since there are over 200 at least causes of PN and that this disease does has full body reaching affects and can be very serious, lifethreatening, and even inherited (and I've been told at some point or other during course of this disease I've had all of these) - I for one am going to do more research in this area.....:) All I know is - I'm not giving up! SS - I'm gonna be on that beach!

Not allergic to cats thank goodness - or dogs! I just can't snuggle up to a pig or a horse (literally) - we're talking hives!

PS - I give up - my fingers do not follow directions well - and every time I think I'm running a spell check on a post it dissapears - how does one spell check?

Kneb, it is very annoying when posts just disappear, in the past i don't know what i have done wrong to cause it, perhaps tiredness, probably hit the wrong button or something but anyway just to save having to do the whole thing over again i found that after i have finished it, i just make a backup copy in Microsoft Word or Wordpad, saves going through the whole thing again, if something goes wrong.

Brian :)

Kmeb

I have just given up on spell checking....foo. Most folks can deal with a few misspellings and typos....

I agree on the many manifestations of PN....to not deal with the entire picture, would limit the issues to...what, only burning feet (yes, I realize burning anywhere hurts like hell)? OR numbness and tingling here and there, or where? PN is hugely diverse and it is hard to go to a forum where only one issue is dealt with, altho they are worth cruising...one can gain some insights.

This disease can involve PICC lines, pacemakers,hoping to turn purple as Barney or getting orthotics and all kinds of issues...and one never know when one may be faced with any one of these issues. I never thought I wanted to look like Barney....there is no cool orange creature that I know of.

One PN can progress rapidly and relentlessly, the other slowly and affecting one body part....I, too, keep saying PN is a symptom.

Ultimately you will be making that decision on the gastric pacemaker based on your personal experience. I have gastroparesis too, and autonomic issues up the wazoo, and mobility issues too, so I am following your 'adventures with neuropathy' if you know what I mean.

Keep us posted.

Well I better log off and take something to de-spaz, I am starting to look like I could join Cirque de Soleil...one of those folks who can gracefully sit on their heads---except I am not graceful, nor smiling.