Symptoms

[Guest guest]

I had never been diagnosed with psoriasis and never experienced any

skin lesions prior to being diagnosed with PA. The rheumatologist who

diagnosed me actually stated that his examination indicated I

had " seronegative spondyloarthritis " , which according to him " didn't

fit classically " into either an ankylosing spondylitis diagnosis OR a

psoriatic arthritis diagnosis, although I " had features of both. " He

did start me on the Methotrexate right away, but although I improved

enough to return to full time work, I continued to have joint

degeneration and pain. No further followup as to diagnosis on his part

despite my continued complaints, (no ultrasounds or MRI's or CT's or

complete immune antibody panels) other than the monthly labs required

due to my taking the Methotrexate. Eventually he told me " the

Methotrexate should be helping, your complaints just mean you have

fibromyalgia too. " About that time, we moved and the new

rheumatologist I consulted confirmed the diagnosis of PA (although my

only symptom at the time was a couple of discolored toenails which kept

falling off and growing back, and what I had thought was just severe

dandruff) and an antibody panel and Schirmer test confirmed the

diagnosis of Sjogrens syndrome as well; he started me on Enbrel at that

time. I ended up having to go off the Enbrel for about 2 months related

to my hip replacement last year (a month preop and a month postop) and

since then the Enbrel has seemed to not be working as effectively; I

can now unfortunately truthfully say, " yes, I do have some psoriasis. "

Currently, I'm pff the Enbrel and am just waiting for the insurance

company to approve the new Humira injections. which will hopefully help.

Both rheumatologists did tell me that about 10-20% of the time, PA can

happen BEFORE P.

Take care,

Wanda

[Guest guest]

Thanks for the info Wanda. Sounds like I'd better just enjoy this

time with only the PA and wait for the other shoe to drop! I hope

your treatment plan and your new hip all works well for you. Thanks

again for sharing.

Ginny

>

> I had never been diagnosed with psoriasis and never experienced any

> skin lesions prior to being diagnosed with PA. The rheumatologist

who

> diagnosed me actually stated that his examination indicated I

> had " seronegative spondyloarthritis " , which according to

him " didn't

> fit classically " into either an ankylosing spondylitis diagnosis OR

a

> psoriatic arthritis diagnosis, although I " had features of both. "

He

> did start me on the Methotrexate right away, but although I

improved

> enough to return to full time work, I continued to have joint

> degeneration and pain. No further followup as to diagnosis on his

part

> despite my continued complaints, (no ultrasounds or MRI's or CT's

or

> complete immune antibody panels) other than the monthly labs

required

> due to my taking the Methotrexate. Eventually he told me " the

> Methotrexate should be helping, your complaints just mean you have

> fibromyalgia too. " About that time, we moved and the new

> rheumatologist I consulted confirmed the diagnosis of PA (although

my

> only symptom at the time was a couple of discolored toenails which

kept

> falling off and growing back, and what I had thought was just

severe

> dandruff) and an antibody panel and Schirmer test confirmed the

> diagnosis of Sjogrens syndrome as well; he started me on Enbrel at

that

> time. I ended up having to go off the Enbrel for about 2 months

related

> to my hip replacement last year (a month preop and a month postop)

and

> since then the Enbrel has seemed to not be working as effectively;

I

> can now unfortunately truthfully say, " yes, I do have some

psoriasis. "

> Currently, I'm pff the Enbrel and am just waiting for the insurance

> company to approve the new Humira injections. which will hopefully

help.

> Both rheumatologists did tell me that about 10-20% of the time, PA

can

> happen BEFORE P.

>

> Take care,

>

> Wanda

>

[Guest guest]

I started having trouble in 96 with symptoms, but I notices slight things years

ago just did not relate them to anything with PA cause they didn't diagnose me

till I got here in NM around 1999-2000... Before they just related it to my two

car accidents and then it was Fibromyalsia... Now is the PA and (dr's) monitor

that now... Its amazing thou, as many of you know me and barb are a couple and

we have both tried to get insurance so that when one of us may not be around the

other is covered and they will NOT covcer us not even our own bank will do

this... So, we are screwed as far as that goes, but the symptoms lately have

become more noticable... I have trouble with my legs, arms, shoulders, knee's

and most all my joints... It seems to be attacking so what eles can be done... I

am on all the medications and they sometimes help... I hate being disabled, but

I know I could not hold down a job, and even on here I take a lot of small

breaks... I am really glad to know all of you here... I am sorry I have been

away so long I just cant seem to get out of my depression lately and feeling the

pain with all this rain and snow falling that normally we don't have... We moved

from Idaho cause of cold, snow ect... They said this has NOT happened in over 50

years... Ohhh lucky me lololol... Its been bitterly cold and its hard to be on

here... I have missed you all thou...

Love and Peace

Always,Shaun

[Editor's Note: Most people take insuring their partners for granted but sadly

this country continues to treat its gay and lesbian CITIZENS as inferior beings

with inferior rights. This country has a long way to go before all its citizens

can say that in this land, there is liberty and justice for all. I'm sorry you

have to go through this. Many large companies and a number of small ones, now

make available domestic partner insurance coverage. In several states, we are

also now finally seeing such coverage available to state and municipal workers.

Unfortunately, in 36 states, gay people can be denied jobs and housing and there

is NO legal protection against it. We're glad you're here and we all extend our

support and understanding. Kathy F.]

[Guest guest]

Hi Shaun,

Wow!!!! I could have wrote that myself except for the rain and snow

bit as we get that in abundance here in the Pennines of West

Yorkshire. I too cannot stay in one position for too long sitting or

standing and I feel guilty at not working. But, I don't suppose there

would be many employers that would be sympathetic to me needing a

sleep when all I have done is clocked in.

Depression, my long-lost friend is smiling from above, smiling at my

tears, (there's a song in there somewhere, Stagnation by Genesis, the

old ones are the best) Oh dear it is quite apt, as I feel like I'm

stagnating. OMG, I love that song it sends shivers down my spine just

thinking about it. Anyway I transgress, I know your all thinking I'm

an old long haired middle class hippy, I'm not going to have

depression anymore, well not until the next time I feel depressed, but

that's a transient feeling isn't it, depression with me comes and

goes, but I'm not going to get depressed about that, to me it just

comes with the disease.

Anyway I'm off to make myself a cup of tea. Green Tea, Jasmine Green

Tea. Full of anti-oxidants I've heard, so that should make me feel a

lot better shouldn't it.

Keep the light shining,

Ian.

I have trouble with my legs, arms, shoulders, knee's and most all my

joints... It seems to be attacking so what eles can be done... I am on

all the medications and they sometimes help... I hate being disabled,

but I know I could not hold down a job, and even on here I take a lot

of small breaks... I am really glad to know all of you here... I am

sorry I have been away so long I just cant seem to get out of my

depression lately and feeling the pain with all this rain and snow

falling that normally we don't have... We moved from Idaho cause of

cold, snow ect... They said this has NOT happened in over 50 years...

Ohhh lucky me lololol... Its been bitterly cold and its hard to be on

here... I have missed you all thou...

>

> Love and Peace

> Always,Shaun

>

[Guest guest]

Im sitting here drinking my cappachino, I am diabetic so I make my own

concoctions... Its Sugar free vanilla carmel creamer, with coffee, a little half

and half, and some extra slenda as I drink it in a big cup... I love making my

own... Its not sugary unless I choose to make it so, and its good for me as I am

diabetic, thou I am not on medications as they so a drop in my sugars and

determined I have been controlling that with diet... Love that... Hope your te

brings you comfort today and milds your moods...

Love and Peace

Always,

Shaun & Barb

[Guest guest]

Ian - I had mine - green tea, that is - from 4 a.m to 5 a.m. this

morning. Two cups, naturally decaffeinated. It soothes me when I

can't sleep. It's especially great when I have to put ice bags on my

ankles or knee - warmth to counteract the cold. I was able to go back

to bed and sleep until 7 a.m.

shining a little sleepily,

sherry z

>

> Anyway I'm off to make myself a cup of tea. Green Tea, Jasmine Green

> Tea. Full of anti-oxidants I've heard, so that should make me feel a

> lot better shouldn't it.

[Guest guest]

Sherry do you enjoy tea? I find that at night with caffeine free I can drink

either, but get some soothing tea, add a tablespoon of honey, and drink that

soothes the nerves... Sorry your too sleepy, I hate when I cant sleep I still

have to take Trazadone's to sleep otherwise I am up all night long...

Love and Peace Always

Shaun and Barb

[Guest guest]

Shaun - I love tea and coffee both. Wine too, but that's off the menu

totally with all the meds I'm taking.

I use honey in my tea and coffee - local honey, the beekeeper is a dear

friend and lives only 1 mile from me. His fall honey is based off

spearmint blossoms and it's terrible in coffee but heavenly in tea!

The only thing that keeps me awake is the pain. It's just so much

noticable at night when there is nothing to distract from it! I've

just been getting up and sitting with ice bags and enjoying some extra

reading time! Usually after 1/2 hour to 2 hours of ice treatment, it's

better and I can go back to sleep. I'm so thankful for that!

regards and welcome back,

sherry z

>

> Sherry do you enjoy tea? I find that at night with caffeine free I

can drink either, but get some soothing tea, add a tablespoon of honey,

and drink that soothes the nerves... Sorry your too sleepy, I hate when

I cant sleep I still have to take Trazadone's to sleep otherwise I am

up all night long...

>

> Love and Peace Always

> Shaun and Barb

>

>

[Guest guest]

In a message dated 31/01/2007 12:21:20 GMT Standard Time,

ghughett@... writes:

This is my first experience with this or any group, but I do have a

question. I was diagnosed with PA 3 years ago

Hi Ginny,

Welcome to the group. I hope the P stays away.

It's good to hear from you.

Take care,

[Guest guest]

Well good for the tea then... I like Mint with honey tea... Its been a personal

fave of mine since I was a younger girl... Hope the sleeping has improved...

Love and Peace Always, Shaun and Barb...

[Guest guest]

Yes maam ! ! very much so ! ! ........my feet hurt so bad, it is like walking on crushed hot glass sometimes ! ! achilles tendons hurt too. But my entire body hurts excluding my eyelashes, but the dry eyes make them itch.

Would you do something for me? Please take your pulse during a hot flash, right in the middle of it. If you dont have a bp/hr monitor, please do it on your jugler vein in your neck. let me know if your heart is racing. Thank you ! ! Girl, those capsules need to go ........as long as you have that foreign body in there, which it is scar tissue and I would bet it has flecks of the saline bags in them along with calcium build up and maybe cystic material. How do your boobs feel? Do you go real good breast checks on yourself? I am sorry you are having so many problems. God Bless you ! ! You are in my prayers..........DedeSee what's free at AOL.com.

[Guest guest]

Some can take Black Cohosh, some cannot. It made me very ill.

I could take Wild Yam and other herbal things for this, but not that.

Lynda

At 10:29 AM 4/2/2007, you wrote:

>My mother swears by Black Cohosh for her hot

>flashes... Perhaps it may be helpful?

>

>Katy:)

>

>Kenda Skaggs <lovesgoldens@...> wrote:

>Sandy,

>

>Do you take hormones for your hot flashes? If not, you might want to get a

>hormone panel done to see if your hormones are in balance. Until I took

>hormones, I had a lot of hot flashes but thankfully they are under control

>now. I went into menopause at age 46, no period for over 12 months.

>

>Kenda

>

>4/2/07 11:25 AM

>

> > Saline implants in my body

> > 1999 -2002

> >

> > Before the removal of my implants

> > I became crippled and barely functioning.

> >

> > My brain fog, crawly feeling, shoulder and neck pain,

> > night sweats, mysterious rash and pain inside my brain.

> > Dissipated among other symptoms immediately after

> > the removal of my implants

> >

> > When I awakened from the anesthesia,

> > I knew my health already improved.

> >

> > I do not understand why so many woman

> > still have the brain fog and other symptoms.

> >

> > I have a long road ahead but at least

> > I can walk, drive and make meals which

> > I could hardly conquer before explant.

> >

> > I am left partially crippled, fatigue, lower back,

> > and knee pain, muscles and joint pain, rapid heartbeat,

> > cannot bend at full range and hurt very badly under

> > my armpits where I was implanted and explanted.

> >

> > I still go into a very deep sleep where nobody can wake me.

> > I do need a lot of sleep to hold up for hours.

> >

> > The implants put me through the change of life

> > But I still get hot flashes for some reason.

> >

> > I wonder if my body is in rejection still or it's

> > because of the capsules that were left in me.

> >

> > I am crippled to the degree that I cannot bend to pick

> > something up from the floor and if I fall down I cannot get up.

> >

> > Anyone this crippled ?

> > Sandy,

> >

> >

> >

> >

> >

> >

>

>

>

><http://us.rd./evt=40705/*http://mrd.mail./try_beta?.intl=ca>\

All

>new -

>

>Get a sneak peak at messages with a handy reading pane.

>

[Guest guest]

Sandy,

I am still implanted but I too feel crippled. I hurts to type this

post. My fingers ache. My right hips always hurts. When I bend

over, I don't fall but it hurts to stand straight gain. My thyroid

is constantly inflammed and I can feel it because it pushes on my

esphogus and causes my voice to go hoarse. Constant costochondritis,

blurry vision, memory loss and brain fog!! I am only 34.

When I read the beginning of your post I was excited to hear that

many things went away ASAP, but it scares me to think the damage I

have created to my muscles and joints for the long haul.

I sure wish you well,

Lynn

>

> Saline implants in my body

> 1999 -2002

>

> Before the removal of my implants

> I became crippled and barely functioning.

>

> My brain fog, crawly feeling, shoulder and neck pain,

> night sweats, mysterious rash and pain inside my brain.

> Dissipated among other symptoms immediately after

> the removal of my implants

>

> When I awakened from the anesthesia,

> I knew my health already improved.

>

> I do not understand why so many woman

> still have the brain fog and other symptoms.

>

> I have a long road ahead but at least

> I can walk, drive and make meals which

> I could hardly conquer before explant.

>

> I am left partially crippled, fatigue, lower back,

> and knee pain, muscles and joint pain, rapid heartbeat,

> cannot bend at full range and hurt very badly under

> my armpits where I was implanted and explanted.

>

> I still go into a very deep sleep where nobody can wake me.

> I do need a lot of sleep to hold up for hours.

>

> The implants put me through the change of life

> But I still get hot flashes for some reason.

>

> I wonder if my body is in rejection still or it's

> because of the capsules that were left in me.

>

> I am crippled to the degree that I cannot bend to pick

> something up from the floor and if I fall down I cannot get up.

>

> Anyone this crippled ?

> Sandy,

>

[Guest guest]

>

> My husband started on 3mg of LDN 13 days ago for his Progressive

> MS. Since he has been on this drug it seems as if his symptoms are

> worst. He is getting lightheaded, along with breaking out in a

sweat.

> He is waking up at night also. I know he should have started first

> on the 1.5, but we are now into the 13th day and we do not want to

> turn back. Could anyone give me any information about how long

these

> side effect last? When should we see some improvements?

>

> Also, my husband is not a drinker but someone ask me if you could

> sometimes have wine or beer with this drug. I thought that was a

good

> question. Can you?

>

========

A glass of Wine is okay.

For those of you in the first several months of LDN therapy you may

experience a temporary increase in symptoms and some of us, not all of

us have had the increased symptoms last as long as 3, 4 monts, rarely

6 months before fading away.

Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains

why the temporary increase in MS symptoms below.

When starting this LDN(Low Dose Naltrexone) therapy in the treatment

of MS, there may also be some initial transient, though temporary,

increase in MS symptoms.

Experience in using this method has demonstrated most commonly, such

as disturbed sleep, occasionally with vivid, bizarre and disturbing

dreams, tiredness, fatigue, spasm and pain. These increased symptoms

would not normally be expected to last more than seven to ten days.

Rarely, other transient symptoms have included more severe pain and

spasm, headache, diarrhea or vomiting. These additional symptoms would

appear to be associated with the previous frequent use of strong

analgesics, which effectively create an addiction and dependency, thus

increasing the body's sensitivity to pain. This temporary increase in

symptoms may also perhaps be explained when we consider the manner in

which this drug is expected to work.

Dr. Lawrence

Posted by

[Guest guest]

Hi my SO started August 13 at 3mg - first few days was improved walking (he was in a wheelchair and was able to walk with no balance issues), vivid dreams, feeling coming back. By about Day 10 his walking was not as good - not in a wheelchair but balance issues were back, major issues with not being able to sleep and extreme fatigue during the day. He is now at Day 28 and his walking is holding steady but he is now sleeping better, decreased dreams, bladder issues have improved, his allergies triggers are not putting him into an exacerbation and the pollen has been high (that is great actually), his fingers have feeling back in them (numbness and tingling is diminished) so there was an increase of his symptoms and he was miserable but knowing that the increase was going to happen he stuck with it. He is now going to be trying the 4.5 and see how he is on that. I found that it helped to document his reactions and symptoms. That way we did not just see

the negative but we also saw the positive effect. I read that you should give up to 3 months for the body to settle in - 9 months was something I read from Dr, Bihari but in reality we took it one day at a time. We are going to continue one day at a time. We are shooting for the 3 month mark for a reevaluation but already he is talking about this being the route to go - so while at a month there is still some increase in symptoms the side effects have lessened or stopped. The fatigue is gone as are the dreams, now sleeping better. Hope that helps you Andi Girlfriend/Caretaker of SO with SPMSkyleigh150 <kyleigh150@...> wrote: My husband started on 3mg of LDN 13 days ago for his Progressive MS. Since he has been on this drug it seems as if his symptoms are worst. He is getting lightheaded, along with breaking out in a sweat. He is waking up at night also. I know he should have started first on the 1.5, but we are now into the 13th day and we do not want to turn back. Could anyone give me any information about how long these side effect last? When should we see some improvements? Also, my husband is not a drinker but someone ask me if you could sometimes have wine or beer with this drug. I thought that was a good question. Can you?

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

, Thanks so much for reminding us of the initial reactions that might occur during the early days on LDN. I just started taking LDN last night and it's good to know what is 'normal'. This will make it easier to press through the initial phase on the drug. Thanks! Ruth

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

Hi ,

Welcome! As for 'symptoms' - you may possibly be overdoing on the

exercise which may be causing the increased fatigue. While it is

important to stay active and exercise, it is equally important

to 'pace' yourself in those activities. Perhaps try to cut back a bit

on some of the exercise and see if that lessens fatigue. CMT muscles

work twice as hard as a non-affected person's muscles.

I bike, do Pilates, and also have an aquatics program. I mix that up

with gardening, walking the dog, etc. Not all on the same day or at the

same time, but combinations/mix of activity.

If you are so active, you may be deficient in Potassium, which could

also contribute to the fatigue. So check with your doc about that.

Gretchen

[Guest guest]

Hello ,

I'm Geri and I'm glad you are part of the group. I have had CMT all my life -

started tripping when I was four and progressed from there. It is very prominent

on my dad's side of the family and at sixty seven I'm in a wheelchair for the

last seven years. While I wish I could walk...I don't miss the pain or the

continuous falling.

Geri in Minnesota

[Guest guest]

Hi ,

I think you are doing fantastic!

[Guest guest]

Hi ,

Welcome - although you say you are not " officially " diagnosed, it sounds

like CMT runs in your family.

I am an extremely active person, participating in as much charity

fundraising exercise related activities as I can, as I am convinced that

staying active helps me physically and mentally. I have done marathon

walks, half triathlon (doing that again this year - I loved it last year), I

do yoga (not at the moment as I have an elbow injury I am recovering from

and putting full body weight on my arm is not allowed until about June)...

I have found that I can become very fatigued through the exercise. When I

feel tired I need to listen and take a day off. This is important to me, as

the physical then starts to make me tired and stressed mentally, which is

really just not a good thing.

So try to make sure you build in days off from the gym and for example if

you cycle to work five days a week, knock it back to three to give yourself

a chance to recover. Sometimes CMT muscles, I find, don't remember how to

" turn off " when fatigued, so we really need to rest to make sure we function

right.

Best wishes,

Donna from London

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

Please consider supporting my 2007 fundraising activities - click through to

learn more - http://home.earthlink.net/~sponsordonna

[Guest guest]

,

Yes. I feel like that when I wear myself out. It especially happens when I go

shopping. Fortunately, that is only on my bad days. Don't overdo it.

[Guest guest]

Thanks for posting this. Some years ago we took my son to a

genetics doctor at a major university medical center. When I told

him my son had lots of trouble with sugar and starches he practically

laughed at me and said there is no such genetic problem that involves

the digestion of sugar or starches. I don't know if this is my

son's problem or not but, I wish I had this info back then.

He is 15 yrs. old and things have now progressed to the point

where everything he takes by mouth (food, supplements, amd drugs)

cause a negative reaction. He recently had a sweat test for

cystic fibrosis. They tell me his numbers put him in the " gray

zone " and further testing is necessary. His test registered a

53 and they tell me that 40 and below would rule out CF and 60 and

above would confirm it. Does anyone know anything about this?

>

>

>

http://www.csidinfo.com/symptoms.htm<http://www.csidinfo.com/symptoms.

htm>

>

>

[Guest guest]

Hi:

I was looking through some old posts and came across this, and I wanted to share

something, even though yuor post is a couple of months old. FWIW,

I went through the exact same thing with my son when he was three years old.

After the CF test came back negative, we had to go to a geneticist to see if my

son had Schwachmann-Diamond disease (I'm sure I spelled that wrong), which the

doctor described as, basically, CF in the gut. My sister's friend used to

babysit a little boy who had the disease, and they used DIGESTIVE ENZYMES to

treat him. The geneticist decided not to test my son because he did not think

he had it. My son has been on digestive enzymes for nearly four years now.

We've tried to wean him off a couple of times, but he always winds up with

stomach problems within a few days, so I guess we're " lifers " with enzymes. But

I don't see that as a bad thing, because my son can eat anything now.

Good luck!

Lori Getz

Re: Symptoms

Thanks for posting this. Some years ago we took my son to a

genetics doctor at a major university medical center. When I told

him my son had lots of trouble with sugar and starches he practically

laughed at me and said there is no such genetic problem that involves

the digestion of sugar or starches. I don't know if this is my

son's problem or not but, I wish I had this info back then.

He is 15 yrs. old and things have now progressed to the point

where everything he takes by mouth (food, supplements, amd drugs)

cause a negative reaction. He recently had a sweat test for

cystic fibrosis. They tell me his numbers put him in the " gray

zone " and further testing is necessary. His test registered a

53 and they tell me that 40 and below would rule out CF and 60 and

above would confirm it. Does anyone know anything about this?

>

>

>

http://www.csidinfo.com/symptoms.htm<http://www.csidinfo.com/symptoms.

htm>

>

>

[Guest guest]

Hello, welcome back, and congratulations

on your upcoming implant freedom day ! !

Yes, those symptoms are very familiar !

They will get better after you become

free again, and detoxing will help you achieve

wellness again !

I am very happy for you !

Hugs N Prayers ~

Dede**************Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com! (http://www.tourtracker.com?NCID=aolmus00050000000112)

[Guest guest]

who in this group has had these hives or reddened inflamed areas? the doctors keep saying all they can come up with is "idiopathic angioedema". i am waiting for insurance to ok another drug named xolair. i have tried all different medicines with the most recent being a combination of atarax,claritin and gastrocrom. i have now stopped those and only take claritin. none of the meds seem to help.

In a message dated 7/10/2008 5:50:31 P.M. Central Daylight Time, DGRAHAMA@... writes:

Hello, welcome back, and congratulationson your upcoming implant freedom day ! ! Yes, those symptoms are very familiar ! They will get better after you becomefree again, and detoxing will help you achievewellness again ! I am very happy for you ! Hugs N Prayers ~Dede**************Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!(http://www.tourtracker.com?NCID=aolmus00050000000112) Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!