Weird symptom

[Guest guest]

Hi ! I am not sure if this will help you out at all, but on my pinky

finger I have this bump and it feels really hard at times. It gets big at

times and other times it is really small. I asked my rheumy and she said it

kind of looks like a cist, my dermatologist said its normal and will come

and go. My family doctor sent me for an xray and nothing came back.

So....yea....I don't think it will help! But yea

have a great day!

Patti~Canada

>From: Docken <nickelme@...>

>Reply-Stillsdisease

>Stillsdisease

>Subject: weird symptom

>Date: Wed, 30 Apr 2003 15:52:41 -0600

>

>On my forearm i have this thing and its causing i little discomfort,more

>importantly i have no clue what it is.ok its like

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Love you all

PattiPike<IMG height=12 src= " http://g

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[Guest guest]

I had sumthin like that too Patti on my right foot was pretty big and painful

when i had shoes on for long time.Danmest thing it just went away lol now i wish

Stills would just magically dissappear too you never know. d.Canada PS

this is nothin like that i dont think.

weird symptom

>Date: Wed, 30 Apr 2003 15:52:41 -0600

>

>On my forearm i have this thing and its causing i little discomfort,more

>importantly i have no clue what it is.ok its like

Please take the time to check out my homepage at

http://www.angelfire.com/hi2/peppermintp

and leave me a message there or just email me back.

Love you all

PattiPike<IMG height=12 src= " http://g

_________________________________________________________________

Add photos to your e-mail with MSN 8. Get 2 months FREE*.

http://join.msn.com/?page=features/featuredemail

[Guest guest]

For the past year or more, Sometimes when I belch, a liquid (like water) comes

up. It is a lot too, and makes me almost feel like I am drowning. I keep

forgetting to mention it to my doctor but was wondering if anyone else has had

this happen.

Zanna

[Guest guest]

Yes, I'm told it is GERD, and I've had it for years. I take a prescription drug, Protonix (40 mg/2x day) and it works like magic. I was put on this when I was in the hospital and kept on it afterwards. The usual dosage is only 40 mg/1x day and that's what my insurance company would pay for, however, because I had already gone through variceal bleeding, my doc asked for an exception and now they cover the dose that works for me.

It's REALLY, REALLY important to protect your esophagus and the veins therein. I have always had low blood pressure, yet I'm taking drug pressure medicine because they want to ensure I don't bleed again (less pressure, less expansion of the esophageal veins). It sounds stupid, but my blood pressure almost never gets near what the "normal" 120/80 pressure. Most often, it's 90/58 or something even goofier.

I'm an advocate of drugs since I was diagnosed with PBC. I've had side effects from some, but my doctors and I have been able to figure out how to mitigate them either with changing dosages or making sure I eat first, and, always, have a large glass of water with all these pills. I will say, I'm very fortunate to have Blue Choice with prescription coverage, so nothing costs me more than $30/month.

And, then, there's the deal with not being able to take anything for pain. The most I can take is 4 extra strength Tylenol/day, all the other options are bad for the liver, as is Tylenol if you take too much over too long a period of time.

As one who was diagnosed with PBC in January and believing I would die right then, (I had been transfused with 10 units of blood because of variceal bleeding for one thing), my husband and I have researched and researched everything and this support group has answered many questions. I was initially diagnosed with stage 4 (end stage) and, whether it's the medications, the fabulous support I've gotten from doctors, nurses, family, friends, and most especially, my husband, I'm at stage 2 and stable. Doesn't mean I won't die tomorrow from this disease, but I could also get hit by a truck or shot while eating at Mc's.

Sorry, didn't mean to ramble, guess I'm feeling pretty good about accepting this disease as something chronic that can be worked on, not something that will strike me down instantaneously.

Hang in there, change doctors if you aren't comfortable with whomever you have, try to be as positive as possible, seek as much help as you can, do whatever makes you feel better. If it's taking 22 pills a day like I do now, or it's trying all the herbal remedies or not taking any drugs. You make the choice and make your life as good as it can be just for today.

Vicki BellPresidentC-Chex

-----Original Message-----From: [mailto: ] On Behalf Of ZannaSent: Saturday, November 12, 2005 9:04 PM Subject: Re: Re: [ ]weird symptomFor the past year or more, Sometimes when I belch, a liquid (like water) comes up. It is a lot too, and makes me almost feel like I am drowning. I keep forgetting to mention it to my doctor but was wondering if anyone else has had this happen.Zanna

[Guest guest]

Hi Holly,

I have had the same zap spot for two or three weeks. It is not as bad as what

you describe. I am actually hoping that it's my nerves making a connection.

When I had surgery this happened all the time as the nerves knitted themselves

back together.

I sure don't know but I hope its a positive shock not a negative one.

[Guest guest]

All weekend long I've been having random ZAPS that feel just like our

favorite medical test, the nerve conductions study. That's not so

unusual, I've had those sudden lance like pains all my life. What is

unusual is that this one keeps hitting the exact same spot, to the

point that it is now tender to the touch like a bruise. Also, instead

of traveling along a nerve in a longitudinal way as usual, this feels

like it is a band around my arm. It is my right (dominant)arm, in a

circumferential pattern just above the elbow. Worst at the postero-

lateral location.

I know that if I go to the doctor, they'll just shake their heads and

say, " that's weird. " I know because I'm a doctor and that's what I'd

say.

Anyone else experience anything like this? I really hate it

because you never know when it's going to hit and for about a second

it's like OWWWWWW!!!!! Then it's completely fine again. My family is

giving me a lot of space, they think maybe I'm crazy.

Holli in Topanga, CA

[Guest guest]

Holli:

You are not crazy. It is probably a weird spasm you have. Spasms come and go

even though though they are only in the legs for me. It might be the way you

are sitting or what you are doing with that arm that might be triggering it. I

wouldn't worry...most likely it will pass as my weird spasms have done.

Marin from Bridgeport, CT

[Guest guest]

Hi Holli,

I have zaps too, sometimes from my legs. I can scream out loud when I feel a

zap, and my son used to get worried, but now it's like: " Did you have a zap,

mummy? " ... So they get used to it. I think maybe your pain is a bit more, since

mine is 1-3 zaps and then nothing for days, and I have no cure. But good to know

that it is common.

Beata

[Guest guest]

Thanks for the thoughts. At least I'm not so unusual. Interestingly,

for the last 48 hours not a single zap, but my arm feels like someone

punched me and left a bruise. I, too, mostly have had them in my feet

and legs (I onced jumped straight out of a chair so fast it scared

people because of a zap in my toe. By the time I was standing all was

fine .... oops, never mind.) But as the years go, I am getting them in

the hands and arms as well.

Holli

[Guest guest]

I have experienced the same thing like an electrical shock outta no where I only

got diagnosed over a year. I know I've had symptoms of CMT since 2000 and try ro

get a DR to refer me nada Kaiser Dr said I was have problems because of weight

gain after I quit smoking HA!! than primary care dr thru my HMO said when he

took blood test that there was no nerve damage that he could see final last year

after another year of pain.

I convinced my PCP that I need to see a neurologist and he referred me to one

and neurologist stated that I probable have it he pin pricks on my feet and than

a week later he did NCV test and in fifteen minutes he said I had CMT wow such a

concept!!!!

 

 

[Guest guest]

I have an outdoor power outlet about three feet off the ground. Everytime

I'd reach for it, I'd get an electric shock, and vow I should get an

electrician to look at it. That is, until I noticed that I got the same

electric shock whenever I'd reach for anything at that level, whether there

was AC power or not. Then I knew it was me.

I occasionally get powerful shocks in my right leg, but when I started aqua

jogging, they went away.

Now if I could just eliminate the spasmic activity in my chest...

O

[Guest guest]

Holli,

Well, I agree that you're not " crazy, " since I suffer (and it's REALLY

suffering) from the same " zaps. " I call them " lightning pains. " As with your

pains, they happen randomly, and often repeatedly, and are quite excrutiating. I

also experience the tenderness that you're experiencing, as well as intense

itching in the area affected.

The " lightning pains " are worst when my back is " out. " I'm one of those folks

who often sleeps " badly. " I'll awaken with a " pinched nerve, " and lightning

pains will often follow. I've learned to twist and turn my body to " pop " my

back, neck or ribs " back in, " relieving the sharp, stabbing pain of the pinched

nerve, and sometimes lessening or stopping the lightning pains. This method is

much cheaper and, for me, as effective as a trip to the chiropractor. This

doesn't " cure " the pains in every case, but it's the only thing that seems to

help.

I put this type of " sensation " on the list of CMT pains, along with the 300-some

other sensations I experience, and when one " zaps! " me in polite company,

eliciting an involuntary " d*mn! " and twitch, I get to explain (again) what (and

why it) happened.

Above all, I've learned to keep it in proper perspective, and to accept what I

can't change or stop. I keep my chin up, and remember that I could have

something much more frightening or public than CMT. " Tourette's, anyone? "

*morbid grin*

Be well!

Kris

[Guest guest]

Agree, you're not crazy. I refer to them as " zingers " .

P.