new member

[Guest guest]

God bless you for finding this site and seeking support. I have " heard " of

the state agencies accusing parents of neglect if their child with RSS seems

malnourshed. It just goes to show how ignorant some people can be. It is

our responsibility to educate them. You may want to get some RSS brochures

from MAGIC (1-800-MAGIC-3) to give to ignoramasus like the ones who took your

granddaughter away. These brochures will also help care providers and

educators during her life. Good luck.

[Guest guest]

Dear Neva,

Believe it or not my pediatrician, who I had seen for 3 years earlier with

my well daughter... She said on more then one occasion that it's a good thing

she knows me and sees in a journal that I am keeping track of what Riley

eats, how much, how often and how much comes right back up, or they would

take him away from me for child neglect...

This is also the doctor that for nine months, did not think anything was

wrong with a little boy that wasn't even gaining a pound a month... We saw

another doctor in the office when she was on vacation and we loved him... He

ran a hold bunch of tests and sent us to the specialist that we still see,

that gave us the diagnoses of RSS... Sorry for the long story, but final

words... We switched to the cool doctor who was concerned. I am so sorry to

hear that you guys granddaughter was taking away, for a while... Don't they

think we go through enough with these little ones...

Chantelle Holley (Kendall (7), Riley RSS 4 & (1)

Pismo Beach, CA

[Guest guest]

Welcome, Kathy! You didn't mention how long total you've been suffering

from all this, but it sounds like it's been a while. Your comment about

taking hot showers to relieve the hives intrigues me. You're right, very few

CU-er's seem to get any relief from the heat. If I take anything over a

lukewarm shower when I'm hiving, I get in trouble. Some years ago I had

chronic fatigue, and to help rid myself of it, I started using hydrotherapy.

In this case taking hot baths - as hot as I could stand - to raise the body

temperature to a low fever level. Supposedly it " tricks " the body into

revving up the old immune system. Worked well for me with only a few weeks

of " treatment. " I assume the mechanics behind the theory of that explains

why most hivers can't tolerate hot showers/baths; our immune systems are

already in high gear.

Hang in there.

-Jackie

----Original Message Follows----

Reply-To: urticariaegroups

To: urticariaegroups

Subject: New Member

Date: Thu, 05 Oct 2000 14:38:47 +1300

Hi !

Kathy from New Zealand here. I joined about and an hour ago and have

received Myra’s Newbie guide and info on PALTALK. Don’t think I am going to

be able to do that , well at least not until I get some expert family

advice. My computer is very ancient and slow , that describes me too. It

can’t receive attachments or any goodies like that, just emails . I am new

and have come late to computing so often get in a bit of a muddle. I have

looked at the message page and know with over 5000 messages I am never

going to read them all. I went though a few and could relate and found them

interesting. I too have Hypothyroidism, my antibody count is high and I

have other autoimmune problems so believe my Urticaria is thus related. For

the last two months I have been very good and had very few patches. Just a

few in the morning and at night. I am dermographic all the time though. I

have given up on all medication even when I have bad times, which I expect

like everyone can last months on end twenty four hours a day. I have had a

couple of courses of prednisone which is the only thing that works but I

don’t like what it does to me. Antihistamines when they do work do so only

partially the first day. I have also tried Doxepin without success. The

only thing that gives me any relief, and it goes against all the literature

I have read, is a hot shower. Cold ones make me itch more. I have the water

as hot as I can stand. I get out looking like a lobster but can often get a

few good hours that way. I will get up twice in the night to shower when it

is really bad. Its worth it. Anyone else out there tried that. On my worst

time I have a low salicylate diet ,which I am sure you know is not easy.

Times like now I can get away with not being quite so strict. I seem to

have a very good specialist at the allergy clinic I attend and he keeps up

with what is going on in any research round the world, but he might do

better with a pointy hat and a magic wand. Well that’s me. Kathy.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

If you do wish to unsubscribe then you can click on the following link:

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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

Any posting that is off the main topic of Chronic Urticaria, we post with a

prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

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[Guest guest]

Thanks for replying. I am taking 60 mgs of Atarax, 10mgs of Zyrtec twice a day and 800 mgs. of placquenil. The doctor thinks it is autoimmune thus the placquenil. I have heard about the Zantac and will ask the Dr. about it tomorrow.

[Guest guest]

Hi! The one thing you will find here is that there are MANY people who know exactly what you are going through...so Welcome but sorry you have to be here.

I've had CU (chronic urticaria) for 5 years now. I have periods of active hiving and incredibly itchy skin and then have periods of remission. I don't know what causes my outbreaks and I don't know what causes me to go in to remission.

I am currently taking Zyrtec 10 mg and Zantac 150 mg once to twice a day depending on how itchy I am.

What medications are you taking and what if anything have your Dr's said?

Barb

London, Ontario, Canada

May the wind be always at your back.mtnbiker@... mountainbiker41@...

[Guest guest]

welcome to the group!!~

new member

> I am so glad to find this group. I have had HIVES of different

> degrees for over 5 years. I've tried dermotologists, allergist etc.,

> I just found a new Dr. who also has what we have. He says there

> really is no cure, he's trying me on doxepin. My urticaria is the

> pressure kind, I can't go to the dentist or hair dresser without

> getting huge hives where ever the chair or sink hits me. I can not

> kneel not even for a second, with in 3 hours my knees will be so

> swollen I can't walk. Does any one have this kind ? I also get the

> joint pain/hives, swollen feet (on bottom) unless I wear these

> areosole shoes ( real soft). Infact I can't wash a floor or use my

> hands to grip anything more than 5 minutes or they swell to the point

> to breaking and bleeding. Any suggestions for releif when it happens?

> I jst had a battery of tests, galbladder, blood, sinus eray, upper GI

> but have no results. Thanks, I am glad you are here, but wish you all

> a cure.

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> <mailto:urticaria-unsubscribeegroups>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

[Guest guest]

Dear all

I am a new member so I thought I would say hello. I am currently on the listbot

list but it was suggested I join here to.

Those of you who have already read this can delete now.

My itching started around 9 months ago and I have had 9

months of my doctor refusing to send me to a dermatologist and

telling me to change my soap, washing powder etc etc. I told

him numerous times that I was using the same soap I always

had, the same washing powder I always had and it made

absolutely no difference at all. The rash was completely random

and seemed to have no common cause.

Finally I refused to leave until he sent me to a dermatologist

which appeared to work. I went off to the hospital imagining that

I was going to be put on various diets, and given allergy tests

and it would be another six months before anyone agreed what I

was allergic to. The very nice dermatologist took one look and

said " classic urticaria " .

It was such a relief. After 8 months of itching I was beginning to

think it was all in my imagination. The only thing that I can pin it

down to was it started when I began to take the contraceptive

pill. My GP, the one who changed my washing powder, told me

that had nothing to do with it, but I wondered if anyone else had

had the same experience. (My confidence in my current GP is

quite low at the moment)

Since then I have been sent for more blood tests and I am wating

for the results which I should get next week. Except now I am

armed with the information and will be asking for a copy of the

results and my file and will know what questions to ask.

Thanks to you all

Shona

--------------------------------

Shona Haslam

Parlimentary Officer

Evangelical Alliance UK

email: shaslam@...

--------------------------------

=

[Guest guest]

Sorry Val - I am brain dead and frozen this morning - don't mind me

Re: New member

Hi !~

I'm Val. 47, mother/stepmom to 11; g-ma/step-g-ma to 17. Newlywed of 9 mos.

Whew!! Well, I'd have to say that with the list of symptoms you gave, it sounds too much like MS for it not to be. I'm anxious to hear your results.

Welcome to the family! I hope you enjoy your stay with us.

Love and blessings...

Val ask <akivas_wifey04> wrote:

Hi, my name is Hester and I reside in southeastern Georgia in a small town about an hour from Savannah. I am 25 years of age, however the symptoms started this time last year. Before this illness came into effect I had been working two jobs and going to school full-time. In August of 2006 I caught Mono, do not ask me how...lol because I did not have time for a beau, thank God....After this illness I never really recovered. I stayed tired all of the time, I wound up quiting my second job, which kinda got me depressed which in turn did not help with the fatigue. I have always loved to work, and to have that taken away was hard to endure. In January of this year, I started noticing that my leg would go numb(my right leg) and stay asleep for hours at the time, I would try to get up and move around but it did not help. One day in late January went numb and stayed that way for almost two weeks. So when I recovered from that, I was ecstatic, not knowing that problem would soon reoccur. In February my leg started doing that again, so I went to see my General Practioner (he is such an awesome person and doc, in the last year he has become a close friend of mine). During this visit he had me get into one of those thin, thin hospital gowns and lay back on his examining bed. He preceeded to stick me with two items, one dull and one sharp. During this exam he wanted me to tell him which item he was poking me with. He stuck me about 20 -- 25 times a piece on both sides of my body. He noticed I was unable to distinguish between the two on my right side (I got all of them wrong). So he referred me to the only Neurologist we have nearby, he is about 20 minutes away, in Statesboro. And of course you can meet those doctors that have the GOD syndrome, and to be as dumb as he was, you would think that he would be a little more kind and sympathetic. At my first visit I noticed that he really did not care what I was going through. I have been going through a lot of turmoil trying to find a decent doctor. A few months later after many unsuccessful doctor's appointments with him, he decided to run some tests for Lung Cancer (this was on a Friday afternoon). So that weekend all I did was cry, and I came so close to writing my will...Then I thought about my family, and how traumatic that would be, especially since we lost my sister three years before. I kept thinking about her daughter, now six years old, and how she would not understand how everyone she loved left her and never came back...So that following Monday after getting the courage to tell my family what he decided to look for, my sister and mother (both being nurses) assured me that it was not Lung Cancer. So I made another appointment to see my GP...At first when I told him what he decided to look for, he laughed and questioned me in disbelief...Luckily I had the orders with me and was able to show him...He then reassured me that it wasn't Lung Cancer and said the Neuro was a complete idiot. He then referred me to the Neuro I am now seeing. It is a relief to finally be seeing a Neuro that really cares about his patients. He says that Multiple Sclerosis is his main concern. After doing several different Neurological exams he noticed that my coordination was aweful as well as my decreased reflexes...He also noted that I had an abnormal Babinski Reflex in my right foot only. What does this really mean???? He then ordered a Lumbar Puncture as well as an MRI of my Cervical and Thoracic Spine with & without contrast...I am now awaiting my results of my lumbar puncture. How difficult was it for you all to be diagnosed with MS????? Since onset of the symptoms I have been put on Medical Leave, which is a bummer.My symptoms are as follows:*Burning pain (in muscles) – moderate to severe, lately severe (all over body including chest cavity)*Pins and Needles Feeling*Numbness*Decreased Muscular Control*Stiffness – PT has really helped this, for days after pt, I feel less stiff...stiffness makes is hard for me to dress*Swelling – worse in back, feet and legs*Fatigue (Mental & Physical)*Malaise **** – A daily problem with me anymore, I do not know if it is because of depression, the pain, weakness, or the abundance of medication I am taking. *Depression – taking Nortriptyline 50 mg and Cymbalta 60 mg daily*Headaches – (Migraines???)*Irritability & Anxiousness*Tingling Sensations (allodynias) – All over my body including my head*Shaky right hand – Intentional tremor ???*Proprioception – loss of position sense – I can barely tell where my leg is placed if I am not directly looking at it. *Major Cramps and Painful Spasms*Dysesthia – Inability to feel when injury happens*Chronic Urinary Tract Infections – from urinary retention????*Feeling faint and dizzy when rising from a sitting position*Bothered by noises and lights (Could Anti-Depressants be causing this?)*Back pain*Muscle weakness – Especially in extremities *Dystonia*Symptoms severity increased with heat*Body can feel heat or burning without any apparent heat near body *Constant state of tiredness – inability to complete most tasks – *Extra tension in arms and legs with usage.*Chronic Indigestion*FRUSTRATIONI have difficulty with the following:* Memory – if I do not write down reminders I will forget to do things, half the time, I forget about the reminders.*Concentrating – I find myself drifting off into la-la land during ANY AND ALL situations.*Thinking clearly – over medicated??????*Walking – depend too much on right leg, tire and cramp easily, unable to put much pressure on either leg, even less on left leg, have to stop and rest after every 15 – 20 yards (EXPERIENCE EXTREME PAIN AND FATIGUE)*Difficulty falling asleep, urinating, swallowing, picking items up, gripping items, buttoning attire, standing *Harder time will small muscle activities, such as turning pages in books, opening jars, wrappers, etc.*Doing Daily Tasks – items that require little or no common sense, mailing items, organizing things such as appointments, labs, and DIRECTIONS (especially oral).*Difficulty coping with STRESS, HEAT AND NOISES!!!!!!!!!!!!*Inability to feel when injury happensMy current diagnoses are as follows:kyphosis, scoliosis, osteopenia, mild spinal stenosis, mild disc degenerative disease, mild disc dessication, fibromyalgia, b-12 deficiency, iron deficiency, myoclonus and hyper-mobility syndrome and anemiaMy current medications are as follows:Repliva 21/7 – Iron DeficiencyLasix 40 mg. – Urinary RetentionPotassium 20meq – Aid with Urinary Retention & CrampingAllegra D 24 hrs– Allergic RhinitisFlonase – Allergic RhinitsCymbalta 60mg – Burning pain associated with FibromyalgiaNortriptyline 50 mg– Headache PreventionLamictal 200mg – Burning pain associated with NeuropathyRequip 1 mg – Myoclonus, Restless LegNaproxen 1000mg – Daily Pain ReliefB-12 – Injections every two months1500 mg Calcium - OsteopeniaEuphemisms are unpleasant truths wearing diplomatic cologne. ~Quentin Crisp~

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