Newly diagnosed

July 17, 2007

>

> Hello All

> here from MN. I was diagnosed earlier this month. I

> was wondering. Has anyone else experienced the hangover effect?

(minus

> the headache) as I now call it. It is a constant lightheadedness

and

> almost a dizziness without balance issues. It seems as if it gets

> better in the evening, after dark. Weird huh?. Does anyone know

> anything about such a symptom?

>

> Thanks

> (or Rob is Okay)

>

This group has all sorts of folk with various ailments.

What disease were you diagnosed with?

Are you using LDN?

Art

July 17, 2007

vertigo? sea sick while stationary on land? just

constantly dizzy.

hope this helps,

Donna

July 17, 2007

I plan on using LDN, because those conventional drugs scare meArt Hansen <rtee54@...> wrote: >> Hello All> here from MN. I was diagnosed earlier this month. I > was wondering. Has anyone else experienced the hangover effect? (minus > the headache) as I now call it. It is a constant lightheadedness and

> almost a dizziness without balance issues. It seems as if it gets > better in the evening, after dark. Weird huh?. Does anyone know > anything about such a symptom? > > Thanks > (or Rob is Okay)>This group has all sorts of folk with various ailments.What disease were you diagnosed with?Are you using LDN?Art

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July 17, 2007

Sounds about right. Does it ever go away?donna chopyak <colorsntrees@...> wrote: vertigo? sea sick while stationary on land? justconstantly dizzy. hope this helps,Donna

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July 17, 2007

Hi MJH I was just diagnosed with MS, and have not begun LDN. This has been with me since about the end of May. foxhillers@... wrote: How much LDN are you taking and for how long? Could you be reacting to the filler if you are taking it in capsule form rather than as the transdermal cream Dr MCCandless developed or in liquid form without

fillers? What is your diagnosis? mjh Posted by: "thedavisgroup2003" thedavisgroup2003 thedavisgroup2003 Tue Jul 17, 2007 12:16 pm (PST) Hello All here from MN. I was diagnosed earlier this month. I was wondering. Has anyone else experienced the hangover effect? (minus the headache) as I now call it. It is a constant lightheadedness and almost a dizziness without balance issues. It seems as if it gets better in the evening, after dark. Weird huh?. Does anyone know anything about such a symptom? Thanks

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July 17, 2007

It is a fairly common ms symptom. It went away for me.

Ummm, maybe try ginger tea or peppermint tea, and

others but research contraindications first please. I

just know those help with nausea. Otherwise, as far as

meds go, take otc Dramamine or get your Dr to Rx

meclazine. They are both sea sickness type drugs.

That's all to your choosing re: going the natural vs

drug route. After dropping to under 100 pounds myself,

I got my Dr to Rx [prescribe] meclazine. It helps but

it also could double as a sleeping pill meaning IT

KNOCKS YOU OUT! Just be aware that the med caused

severe sleepiness in me at least. Not sure what other

meds they Rx for vertigo. gl though

Donna

July 18, 2007

Same here, like I never slept. Nighttine is best. Not on ldn yet, soon

ï»¿ ï»¿ ï»¿ ï»¿ ï»¿ God Bless

/Wsper

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-- Re: [low dose naltrexone] Newly Diagnosed

,

Yes, I do also. As I said in response to someone else, I'm sleepy, kind of a drugged feeling during the day and evenings are always better for me.

Wanda

-------------- Original message -------------- From: "thedavisgroup2003" <thedavisgroup2003 >

Hello All here from MN. I was diagnosed earlier this month. I was wondering. Has anyone else experienced the hangover effect? (minus the headache) as I now call it. It is a constant lightheadedness and almost a dizziness without balance issues. It seems as if it gets better in the evening, after dark. Weird huh?. Does anyone know anything about such a symptom? Thanks (or Rob is Okay)

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July 18, 2007

Thank you Donna. donna chopyak <colorsntrees@...> wrote: It is a fairly common ms symptom. It went away for me.Ummm, maybe try ginger tea or peppermint tea, andothers but research contraindications first please. Ijust know those help with nausea. Otherwise, as far asmeds go, take otc Dramamine or get your Dr to Rxmeclazine. They are both sea sickness type drugs.That's all to your choosing re: going the natural vsdrug route. After dropping to under

100 pounds myself,I got my Dr to Rx [prescribe] meclazine. It helps butit also could double as a sleeping pill meaning ITKNOCKS YOU OUT! Just be aware that the med causedsevere sleepiness in me at least. Not sure what othermeds they Rx for vertigo. gl thoughDonna

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July 18, 2007

MJH Transdermal Cream?, Liquid? Wow I have alot to learn.foxhillers@... wrote: How much LDN are you taking and for how long? Could you be reacting to the filler if you are taking it in capsule form rather than as the transdermal cream Dr MCCandless developed or in liquid form without fillers? What is your diagnosis? mjh Posted by: "thedavisgroup2003" thedavisgroup2003 thedavisgroup2003 Tue Jul 17, 2007 12:16 pm (PST) Hello All here from MN. I was diagnosed earlier this month. I was wondering. Has anyone else experienced the hangover effect? (minus the headache) as I now call it. It is a constant lightheadedness and almost a dizziness without balance issues. It seems as if it gets better in the evening, after dark. Weird huh?. Does anyone know anything about such a symptom? Thanks (or Rob is Okay) Get

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July 18, 2007

Hi -

I'm newly diagnosed too. I can certainly relate to the dizziness thing. My first symptom was optic neuritis. I was dizzy and had eye pain for well over a year. Any light was painful. I sometimes couldn't walk a straight line. During that year, I went to the opthamologist 3 times. Each time he said it would clear up in 4-6 weeks. It did not.

My legs went numb in April and I saw a neurologist for the first time. He prescribed 4 days of 500 mg of prednisone because my other eye was beginning symptoms. It knocked out the dizziness and eye pain. This week I received my official diagnosis.

I work in Minnesota and am beginning my search for a doc to prescribe LDN. My diagnosis is from Mayo in Rochester and though my neurologist will not prescribe LDN, he was kind enough to accept the Dr. packet I found on this group and said that he hopes I will tell him if I take it, and that he will still accept me as a patient if I do.

Maurey

July 18, 2007

hi Rob yes I had a lightheadedness before LDN

I was told it had something to do with the eyes and all colours became brighter after LDN it was as though I had been looking though a lace curtain

lyn

[low dose naltrexone] Newly Diagnosed

Hello All

here from MN. I was diagnosed earlier this month. I

was wondering. Has anyone else experienced the hangover effect? (minus

the headache) as I now call it. It is a constant lightheadedness and

almost a dizziness without balance issues. It seems as if it gets

better in the evening, after dark. Weird huh?. Does anyone know

anything about such a symptom?

Thanks

(or Rob is Okay)

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July 18, 2007

Thanks lyn RosGlenw@... wrote: hi Rob yes I had a lightheadedness before LDNI was told it had something to do with the eyes and all colours became brighter after LDN it was as though I had been looking though a lace curtainlyn [low dose naltrexone] Newly

Diagnosed Hello All here from MN. I was diagnosed earlier this month. I was wondering. Has anyone else experienced the hangover effect? (minus the headache) as I now call it. It is a constant lightheadedness and almost a dizziness without balance issues. It seems as if it gets better in the evening, after dark. Weird huh?. Does anyone know anything about such a symptom? Thanks (or Rob is Okay) Get a FREE AOL Email account with 2GB of storage. Plus, share and store photos and experience exclusively recorded live music Sessions from your favourite artists. Click

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July 18, 2007

I had a full exam done by an opthalmologist, and he said that my eyes were doing fine. other than the "getting older" factor, an a slight twist in the optic nerve. He was also aware of my diagnosis. Of course the day I saw him I had somehow become symptom free four days prior. ?????????? Thanks Maurey Maureen Gharrity <mgharrity@...> wrote: Hi - I'm newly

diagnosed too. I can certainly relate to the dizziness thing. My first symptom was optic neuritis. I was dizzy and had eye pain for well over a year. Any light was painful. I sometimes couldn't walk a straight line. During that year, I went to the opthamologist 3 times. Each time he said it would clear up in 4-6 weeks. It did not. My legs went numb in April and I saw a neurologist for the first time. He prescribed 4 days of 500 mg of prednisone because my other eye was beginning symptoms. It knocked out the dizziness and eye pain. This week I received my official diagnosis. I work in Minnesota and am beginning my search for a doc to prescribe LDN. My diagnosis is from Mayo in Rochester and though my neurologist will not prescribe LDN, he was kind enough to accept the Dr. packet I found on this group and said that he hopes I will tell him if I take it, and that he will still accept me as a patient if I do. Maurey

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October 26, 2007

It's good to finally have someone listen to you, isn't it? And it's

good to finally know what's wrong, too. Help is on the way! There

are some good treatments although it may take awhile to find the

right one(s) for you. You will eventually feel better!

regards,

sherry z

>

> For the past year I thought I was going out of my mind. I've had

> psoriasis since I was in my early 20's, but never had any other

> problems, well maybe some fatigue problems. anyways, about a year

ago

October 27, 2007

It's nice that there are others out there they I know I will be able

to turn to, and others that can understand what I am going thru. My

husband keeps saying it's just old age and I need to get used to it,

well sorry but I don't think 41 is old anymore.

>

> It's good to finally have someone listen to you, isn't it? And it's

> good to finally know what's wrong, too. Help is on the way! There

> are some good treatments although it may take awhile to find the

> right one(s) for you. You will eventually feel better!

>

> regards,

> sherry z

October 27, 2007

YOUR RIGHT 41 ISN'T OLD. I WAS DIAGNOSED AT 42 BUT HAD SYMPTOMS BEFORE THAT.

MARYLOU

February 9, 2008

I've been taking MTX for about 12 weeks now, and am up to taking 20 mg a

week. For me, I take it on Saturdays, with food in the late morning. That

way, if I have some nausea, it happens over the weekend (if I get nausea, it

happens the day after taking my meds, which my rheumy says is common). I've

taken it without food in the beginning and had no problems, but that was at

a much lower dose. Since my dosage is creeping up these days, I feel like

taking it with food might be a good thing. I take it also on Saturday so

I can take it easy all weekend. Each time I take it, and especially if I

increase the dosage, I find that I'm more tired for a few days. For me, if I

take the MTX on a Saturday, I'm usually back to my old self by Monday or

Tuesday if the dose has been increased.

Good luck!

February 9, 2008

Thanks for responding, . I am off from work on Fridays, and thought I

would start the MTX Thursday night next week. I am starting off taking 10mg (4

pills) which I guess is a lower dose to start off with. I guess it takes awhile

to know if the meds help. The doc changed me from Naprosyn to Mobic, and

neither one help, so I won't take it anymore. I also found out I am

pre-diabetic and am trying to get my blood sugar down without meds. There are

so many contraindications with all these drugs--my poor liver. Thanks again.

Lynn

February 9, 2008

Lynn,

The only real side effect that I have from the MTX is that it makes me

a little tired the next day, so I take it on Friday night and just know

that I will not be at my best on Saturday.

Take care,

February 10, 2008

Lynn,

I have been taking 6 tablets of MTX once a week for the past 4 months. The

only side effects I've had is heartburn and my cheeks get very red the day after

I take it. I take mine first thing in the morning. Everyone is different. I

was very nervous about taking it but so far I've had a good experience. Good

Luck!

May 22, 2008

> I put a letter in to the school to

> have evaluations done for IQ, gross motor, achievement testing and

> pragmatic language. He already gets OT twice a week at school because

> of the fine motor delays identified in kindergarten, which now we know

> is a part of AS too.

Hi Karin. Don't forget to ask for a neuropsych eval or some type of

eval to check his executive functioning. For our AS son, this turned

out to be one of his biggest problems (he is 13 now). You may have to

do it yourself if you can't talk the school into it, and it may be

covered by your insurance (mine was, but others aren't). And be

careful about the fine motor delays. They thought my son had fine

motor delays for several years, but it turned out it was manual

dexterity and bilateral coordination problems. If he isn't making

progress, be suspicious. Good luck and welcome!

Ruth

May 22, 2008

Hi Karin,

Try to take it easy. My son was diagnosed last year in June. It was a shock to us. I was totally overwhelmed as well and didn't know where to begin. I have learned to take one thing at a time. One issue at a time. I had to learn that AS is not cured overnight. Behaviors are not cured instantly. As a matter of fact they take longer to resolve. So, doing a ton of things for him at one time wore me out. There is no quick cure. We learned everything we could. Found out exactly what our son needed. Dealt with the most important things first......(IEP, OT and a socialization group, making a schedule.) Those are the important things I had. Yours may be very different. Everything else.....pragmatic speech, group OT, sleep schedule....etc. were things that we could atend to once the important things were out of the way.

Another mistake I made when we found out has AS was over treating him. I wanted to know everything right away. Learn as much as I could. It is a lifetime of learning. I wanted early intervention right away!! Right now!!! A panic response. And, I felt I was doing the right thing. We had him in an Autism day camp, a floortime program, karate, OT. He bagan melting down all the time. He was so tired. I had to learn as a new AS parent that it is a lifetime of therapy. Not to overwhelm my son or myself. We have learned to accept the mistakes we make, learn and move forward.

DOK Grace Chapter

"Prayer without work is empty words,service without prayer is labor lost."

( ) Newly Diagnosed

My 8yo son was just diagnosed on Tuesday with Aspergers. I have amillion and one questions now. My husband and I have a PPT today,which we know is just the tip of the iceberg of what happen next. Ichecked out 8 books from the library, and have been to a dozenwebsites for info. I was glad to find there are some online supportforums! I know all will be fine, but I'm feeling overwhelmed rightnow. The doc that diagnosed does not do any treatment. We don't evenreally know what that will involve. I put a letter in to the school tohave evaluations done for IQ, gross motor, achievement testing andpragmatic language. He already gets OT twice a week at school becauseof the fine motor delays identified in kindergarten, which now we knowis a part of AS too. Anyway, glad to have a place to vent and see whatis working/not working for other families!

May 31, 2008

Welcome, " railtont " .

Many people in this group have PBC, with or without overlaps.

Feel free to ask questions; someone here probably can help with answers.

Harper

In a message dated 5/31/08 3:39:01 PM, railtont@... writes:

>

> Hi, I was diagnosed with PBC 2 days ago and have been seeking info on

> the net since. My emotions are all over the place and I was glad to

> find places such as this. I'm not sure how to find my way around here

> yet or if I'm putting messages in the right places etc but hope it

> will help having this contact.

>

**************

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June 1, 2008

Hi Railtont. Please don't panic. I was diagnosed in March with PBC,

biopsied, and staged with stage 1 PBC. I started taking URSO and

haven't had any problems at all. Nothing has changed other than having

elevated blood tests. I am to have repeat blood test every 3 months. I

am trying to get myself healthy as possible now in the event that I ever

develope additional liver related problems. The first couple months I

also was in shock but realized that I wasn't going to go into liver

fairlure right now or maybe ever and since we can change the cards we're

delt, we mise well just move on and not spend all my time focusing on

this disease. After I was diagnosed I found out that I also have a

cousin who had been diagnosed 4 years earlier and is doing just fine.

She's about 10 years old than me so for some reason I find that very

encouraging. I'm 47 and work full time, attend college part time, and

take care of a husband and 3 teenagers so I don't have alot of time to

spend on feeling sorry for myself and that's they way it should be.

Give yourself sometime to research PBC and I'll bet you'll be ok real

soon with all this.

<mailto: >

, " railtont " <railtont@...> wrote:

>

> Hi, I was diagnosed with PBC 2 days ago and have been seeking info on

> the net since. My emotions are all over the place and I was glad to

> find places such as this. I'm not sure how to find my way around here

> yet or if I'm putting messages in the right places etc but hope it

> will help having this contact.

>

June 2, 2008

Hi Janet. Thanks for that. I'm hopeful that once I've been staged etc then I can

just get on with life. I'm 44, have two sons of 21 and 23. The eldest was

diagnosed with an autoimmune condition 2 years ago (ideopathic thrombocytopenic

purpura) and after a huge focus on that, lots of drug therapy and a splenectomy,

he has been in remission for a few months now and life more or less goes on as

normal.

I'm getting married in 12 weeks and it's a great distraction.

I'm so glad to hear you are getting on with a full life so soon after your

diagnosis.

Tilly.

[ ] Re: Newly Diagnosed