Advice

[Guest guest]

You should be able to go to Gurst Services & get a special needs pass that allows you to skip the long lines. I know that they have these at Disney. We went to the exit of every ride. We did have to wait, but not for long. It coveted up to 5 people in the party.Sent from my iPhoneBlessings, DonnaOn Feb 26, 2010, at 9:58 AM, Suzanne Markwood <suzmarkwood@...> wrote:

Yes, there are express passes you can buy for Universal, where you can skip the regular line. Or they are free if you stay on Universal properties. I wouldn't worry about the hotel, you will not be in the room much at all. Also, if your husband is getting annoying, you and your son can go one way, husband and daughter go another way and meet up later. Everyone will not want to see the same shows or rides anyway. Don't let it be stressful for you.

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

Suzanne

suzmarkwood

From: sara11alex77 <sara61145hotmail>Subject: ( ) Advice Date: Friday, February 26, 2010, 7:16 AM

Help! We are going on our very first vacation in May to Universal Orlando. My son, is 20 yrs old. I have a daughter - 27. The problem - my hus and daughter are still not into dealing with . They cause him to have meltdowns frequently. My hus teases all the time and doesn't like to listen when talks about the books he writes. My daughter is constantly telling him to be quiet. Now, I'm thinking I was in dreamworld thinking we could take a vac. I'm afraid they'll be constantly fighting cramped in one room, and I don't want this to be a stressful ordeal. I'm ready to cancel! Should I? Should I see if we can possibly get a second hotel room at this late date? Also - does Universal have any special things for someone with ASD? Like a shorter line? has NO patience! Thanks...... .....Sara

[Guest guest]

Matt,

I have extremely tight shoulders and neck. I get knots. I have TMJ. I don't

know if there is a connection. I tend to think that there is one because it is

so similar to the pain and tightness in my legs & because the people in my

family who have CMT share these problems. CMT effects the extremities in the

most extreme way, but it is not limited to the periferals.

My suspicion is that I probably move differently because certain muscles are

atrophied. The result is major over use of certain muscles. Just my theory.

Water running helps me, Yoga ( when I get around to it), wearing a mouth guard

at night helps, using a buckwheat pillow & watching my posture.

________________________________

From: Matt <tbobematt@...>

Sent: Mon, April 12, 2010 11:58:51 AM

Subject: Advice

Thank you everyone on the advice about the neurologist! I really appreciated

everyone's input. I think I'm either going to go back to my primary doc with a

different approach(a symptom list) or go to a pain clinic that I have been to in

the past, before my CMT knowledge.

Another question I have is, is there any connection between CMT and

Fibromyalgia? And does anyone else have muscle tightness problems in the

shoulders and neck? I have horrible TMJ problems such as constantly clenching my

jaw, which in turn causes " knots " in my muscles in my upper back and neck. I

just wonder if since I have such tight muscles on my lower half of my body that

are associated with CMT, if the muscle problem on my top half is a different

problem or related to CMT...

thanks again

Matt

[Guest guest]

I have very tight shoulders and am always in pain there. I have noticed that my

shoulders have atrophied over the years (can't keep spaghettis straps on my

shoulders and when i do shoulder exercises, i can barely lift any weight) Was

just discussing this last night with my husband. I use my cane on my left side,

but my right side is the one that hurts. I notice when i am walking i hike up my

shoulders. This also happens when i am sleeping and typing. I have started to

try to wear a cervical pillow when i am typing to force me to relax my

shoulders. My husband also said my posture is poor so trying to concentrate on

that too.

Funny thought last night! I was trying to open a water bottle, but my hands were

too weak. I then used my teeth to open it ( i know, horrors!) My teeth are the

strongest things i have in my body, so knowing I have Charcot Marie " Tooth " I

cracked myself up last night thinking about the irony of that one!!!!!!!

Jackie

And YES, i know that CMT has nothing to do with teeth!

Advice

Thank you everyone on the advice about the neurologist! I really appreciated

everyone's input. I think I'm either going to go back to my primary doc with a

different approach(a symptom list) or go to a pain clinic that I have been to in

the past, before my CMT knowledge.

Another question I have is, is there any connection between CMT and

Fibromyalgia? And does anyone else have muscle tightness problems in the

shoulders and neck? I have horrible TMJ problems such as constantly clenching my

jaw, which in turn causes " knots " in my muscles in my upper back and neck. I

just wonder if since I have such tight muscles on my lower half of my body that

are associated with CMT, if the muscle problem on my top half is a different

problem or related to CMT...

thanks again

Matt

[Guest guest]

Hi Matt,

 

I've been given a diagnosis of Fibromyalgia and Complex Regional Pain

Syndrome.  These words describe the symptoms, not the cause.  My CMT is the

underlying issue.

 

I have upper back degeneration as a result of CMT and my neck/throat is very

weak, but I don't have TMJ issues.  If you do, you may want to get

it evaluated.  While it's possible the problem is due to unequal muscle

strengths in your jaw as a result of CMT, it's much more likely that it's not

CMT related (i.e. jaw-clenching/teeth grinding) and perhaps there is something

they can do to help with that problem, i.e. a mouth brace or therapy, etc. 

 

From: Matt <tbobematt@...>

Subject: Advice

Date: Monday, April 12, 2010, 8:58 AM

 

Thank you everyone on the advice about the neurologist! I really appreciated

everyone's input. I think I'm either going to go back to my primary doc with a

different approach(a symptom list) or go to a pain clinic that I have been to in

the past, before my CMT knowledge.

Another question I have is, is there any connection between CMT and

Fibromyalgia? And does anyone else have muscle tightness problems in the

shoulders and neck? I have horrible TMJ problems such as constantly clenching my

jaw, which in turn causes " knots " in my muscles in my upper back and neck. I

just wonder if since I have such tight muscles on my lower half of my body that

are associated with CMT, if the muscle problem on my top half is a different

problem or related to CMT...

thanks again

Matt

[Guest guest]

Ya I think I definitely have many of the " qualifications " for fibromyalgia. In

my Pre-CMT diagnosis days, I did bring up this concern to my primary doc, which

he poo pooed, which is why he isnt my dr anymore! I think it might all be

from the weak legs and feet muscles. If you have an unsturdy, weak base,

everything else will be out of alignment.

I do have a night bite guard. I went through at least 3 different styles till I

found the one that works the best. It's one of the soft, squishy kinds. Only

problem is that I chew threw them every 3 or 4 months, and thats when I get

really bad flare ups in my neck and shoulder muscles. I'm lucky that my mother

in law works at a dentist, because she makes them when I need a new one!

I was put on nortripyline to help with the grinding and clenching. It help for

a while, but the last few weeks I've noticed that I'm tight all the time, even

with a new bite guard.

Anywho thanks for input....it does make me feel a bit better knowing others go

through this and talking about it does help cope.

Matt

________________________________

From: <agraham2k@...>

Sent: Tue, April 13, 2010 2:04:50 PM

Subject: Re: Advice

Hi Matt,

I've been given a diagnosis of Fibromyalgia and Complex Regional Pain Syndrome.

These words describe the symptoms, not the cause. My CMT is the underlying

issue.

I have upper back degeneration as a result of CMT and my neck/throat is very

weak, but I don't have TMJ issues. If you do, you may want to get it evaluated.

While it's possible the problem is due to unequal muscle strengths in your jaw

as a result of CMT, it's much more likely that it's not CMT related (i.e.

jaw-clenching/ teeth grinding) and perhaps there is something they can do to

help with that problem, i.e. a mouth brace or therapy, etc.

From: Matt <tbobematt (DOT) com>

Subject: Advice

groups (DOT) com

Date: Monday, April 12, 2010, 8:58 AM

Thank you everyone on the advice about the neurologist! I really appreciated

everyone's input. I think I'm either going to go back to my primary doc with a

different approach(a symptom list) or go to a pain clinic that I have been to in

the past, before my CMT knowledge.

Another question I have is, is there any connection between CMT and

Fibromyalgia? And does anyone else have muscle tightness problems in the

shoulders and neck? I have horrible TMJ problems such as constantly clenching my

jaw, which in turn causes " knots " in my muscles in my upper back and neck. I

just wonder if since I have such tight muscles on my lower half of my body that

are associated with CMT, if the muscle problem on my top half is a different

problem or related to CMT...

thanks again

Matt

[Guest guest]

Hi Matt,

I have neck problems. I think it is from always looking down to watching my

step. My shoulders also hurt. I see a chiropractor and that helps a lot with

pain and headaches. I have had x-rays done and they showed disc degeneration. No

idea if it is CMT related but I am sure having CMT doesn't help.

[Guest guest]

Hi Matt,

I also have Fibromyalgia (my spouse has CMT) and some days our symptoms cross! I

clench my teeth badly, usually in my sleep & have ruined many teeth.  I am not

able to tolerate a mouthguard, so I am trying hypnotherapy.  I am just starting

so I don't have any results yet - there is a student clinic in my area that does

the first visit free & then they are $15 a session.  I figure it's worth trying.

We both started taking CoQ10 for balance and it seems to have helped a little.

Good luck!

in AZ

From: Matt <tbobematt (DOT) com>

Subject: Advice

groups (DOT) com

Date: Monday, April 12, 2010, 8:58 AM

Thank you everyone on the advice about the neurologist! I really appreciated

everyone's input. I think I'm either going to go back to my primary doc with a

different approach(a symptom list) or go to a pain clinic that I have been to in

the past, before my CMT knowledge.

Another question I have is, is there any connection between CMT and

Fibromyalgia? And does anyone else have muscle tightness problems in the

shoulders and neck? I have horrible TMJ problems such as constantly clenching my

jaw, which in turn causes " knots " in my muscles in my upper back and neck. I

just wonder if since I have such tight muscles on my lower half of my body that

are associated with CMT, if the muscle problem on my top half is a different

problem or related to CMT...

thanks again

Matt

[Guest guest]

Thanks, Teri . I'm just feeling discouraged . Hubby and I really thought that I would do tx and then I would be fine after a few months of healing. Then came the Fibro that nothing yet has helped. Then came the " severe "( dr said) nuerothopy. And now maybe something else. Just being heaped onto me. I'm just tired and discouraged. But thx for being here for me. And, now, if you will excuse me, I have to go throw up. What is the best thing to do if you vomit right after taking meds( not RIBA). Do you re-take them? I've not been taking them again, but this is almost every night. Water reflux.http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Dec 2, 2010, at 6:05 PM, Theresa Gottlieb <theresagottlieb@...> wrote:I know sweetie.. I got to a point where I refused to talk to the doctors it was so bad. And that was BEFORE I even started treatment. Your doctors appointment is tomorrow right?

Hopefully you can get a lot of answers then.. in the meantime let's not think the worst, lets just think that your bloodwork is screwed up because of the meds. It happens a lot.

I had a cancer tumor marker test run earlier this year and it freaked me out waiting for the results.. I am deathly afraid of cancer. Runs in my family.. as I light another friggin smoke. But that is also when I found out that the Interferon and Ribavirin were cancer drugs... so they would have killed anything I had starting. This is why I am not thinking that Myeloma is a possibility. The drugs would have already killed it.

Here is something else I have figured out... if you dwell on something like this, you can actually bring it on. Kinda the opposite of positive thinking. Now, during treatment, our thoughts are anything BUT rational. We can't see logic even if it smacks us in the head. It's just part of what the drugs do. It's really easy to go running off with a thought process and take it to unnatural places. Then we usually forget what the thought process was to start with. Talk to the doctor tomorrow. Have him find out what the hell is going on. Tell him you can't deal with any more crap right now and you just need to deal with this treatment.

How many weeks do you have left?Are you eating?Do you have a glass of water by you now?Hugs,Teri

On Thu, Dec 2, 2010 at 5:54 PM, trudykinsey@... <trudykinsey@...> wrote:

Ok how do you NOT think about so ething. I don't know how to meditate. I'm getting very discouragedd. I know it is wrong but can't God just leave me alone for while? Quit heaping more on?

http://facebook.com/people/andTrudy-Kinsey/1340460877 "

"A well- behaved woman never made history"...Mae West

http://oktravels.wordpress.com

http://allrecipes.com/cook/TrudyK/profile.aspx

[Guest guest]

Hi Trudy

Take a sip of a soda pop. I use 7-up.

The carbonation [the fizz] will help to settle your stomach fast.

Please try not to be too discouraged.

I know all these health upsets get on your nerves, but there are answers.

The more the doctors can find out now, the sooner they can help you heal.

Your doing really good with your treatment, and youve come a long ways.

You have much to be proud of.

Please try to just relax, and go with the flow.

We are all right here behind you every step of the way.

We care about your wellbeing and we all love you.

I am blasting you with everything that is good.

love

don in ks

Ok how do you NOT think about so ething. I don't know how to meditate. I'm getting very discouragedd. I know it is wrong but can't God just leave me alone for while? Quit heaping more on?http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx

[Guest guest]

Hi Everyone,

I go to my first Rheumy appt. since starting Enbrel and Diclofenac. The

Enbrel has helped my P dramatically but I have pain almost constantly in my

back and my hands are getting worse, I have bone spurs on many of my

fingers. It has been one year since I was diagnosed with PsA and I am much

worse. I just don't know what to do, I'm sure the weather has some part in m

pain. I just don't know. I hope everyone has a happy Christmas, hopefully a

pain free one.

Lori in AZ

[Guest guest]

Im on all three humira shots, methorexate and Sulfasalzine... So far its

controlling some of the pain and out breaks of psoriasis... I used to get

them really bad, now its got some parts of it under control... Hope things

work out for you...

[Guest guest]

Hi all fellow sorry psoriatics. I'm at a really LOW ebb today after feeling

soooo hopeful the Rheumy would prescribe LDN which I've been using since Feb.

But no....not enough evidence. It's soooo frustrating! I've been virtually

pain-free since I started taking it but it's a pain getting it privately. i've

run out today & it's Christmas - so no chance of any more for a while. I can

expect pain again tomorrow. Yuk! Rant over....

[Guest guest]

Sorry to hear that :-( pain is no fun . I'm not familar with the meds your

talking about . Please tell me more! I was so happy to find this group as I have

no friends with the same condition and I feel like someone really understands

now :-)

Sent from my iPhone

On Dec 24, 2010, at 11:51 AM, " Mo " <footloosefancy3@...> wrote:

Hi all fellow sorry psoriatics. I'm at a really LOW ebb today after feeling

soooo hopeful the Rheumy would prescribe LDN which I've been using since Feb.

But no....not enough evidence. It's soooo frustrating! I've been virtually

pain-free since I started taking it but it's a pain getting it privately. i've

run out today & it's Christmas - so no chance of any more for a while. I can

expect pain again tomorrow. Yuk! Rant over....

[Guest guest]

Hi Everyone,

I saw my Rheumy on the 22nd. She put me on Methadone (up to 3 tabs per

day) to take along with my Percocet for pain. She wants to start me on Arava

in January if my liver function comes back ok. The VA made a decision on my

compensation increase but I won't no anything for another 10 to 14 business

days, my home just went into foreclosure with the sale date set for March

23. Merry Christmas and Happy New Year to me and to all. I'm so tired of

fighting, soooo tired. I keep tryin to see the pros of whatever the outcome

of this latest drama is.

Lori in AZ

[Guest guest]

Are you on anything else? I am curious about LDN but hesitant to change as I am

doing so well on MTX. Patty

_______________________________

From: Mo <footloosefancy3@...>

Subject: [ ] Re: Advice

Hi all fellow sorry psoriatics. I'm at a really LOW ebb today after feeling

soooo hopeful the Rheumy would prescribe LDN which I've been using since Feb.

But no....not enough evidence. It's soooo frustrating! I've been virtually

pain-free since I started taking it but it's a pain getting it privately. i've

run out today & it's Christmas - so no chance of any more for a while. I can

expect pain again tomorrow. Yuk! Rant over....

[Guest guest]

Hi Everyone,

Saw my Rheumy, my liver enzymes are up. Rheumy wants to try

Leflunomide (Arava) this month if labs come back o.k. Methadone didn't work

out, think I'm allergic to it so I'm back to just the Percocet.This is such

a horrible way to live, I'm all alone, no one understands or seems to have

any compassion. The only time I seem to get relief is when I am laying down

in my bed. I sleep so much, I fall asleep and don't even realize it until I

drop what is in my hand and I'm startled awake.I was told by Rheumy that I'm

not allowed to drive, it is excruciating when I try to walk. I'm having

problems with my breathing, don't no if it's related to PsA. Does anyone

else have Asthmatic issues that is related? My Allergy doc is playing with

my inhalers now and getting chest x-rays. The fun never ends.

Lori in AZ

[Guest guest]

Lori -

I'm so sorry this is a bad time for you. We've all been through bad times and

we understand in a way only those who have been through it can. Your question

about asthma is a real interesting issue in my family right now. My daughter

inherited this from me and was on biologics and NSAIDs for it as a grad student

at U of Michigan in 2009 when she got sick with H1N1 on Labor Day, before they

had the vaccine out. From H1N1 she got RAD (reactive airway disease) which

evolved into asthma last year. As she has increased the asthma meds she's been

able to decrease the arthritis meds. She has now been in drug free remission

from the arthritis for six months! When she was home for Christmas everyone

commented about how energetic and bouncy she was - she even took tennis lessons

in the fall. As an immunology major, she thinks the asthma is caused by a

different and competing set of cytokines the immune system makes to cause

inflammation. So her immune system is too busy causing her asthma to cause the

arthritis. It sounds like your immune system is super hyperactive right now.

Try to calm it down.... keep away from stress if at all possible, take fish oil,

green tea, alpha lipoic acid, cat's claw and any other natural

anti-inflammatories you can find until the doctor finds something that works for

you.

Janette in Indiana

[Guest guest]

I use Nucynta for pain relief. It is superior pain reliever in my opinion.

thanks,,, Katy

[Guest guest]

Well, according to Mayleen, I'm damned if I do and damned if I

don't. I guess I also shouldn't trust the best neurosurgeons in the

world. To sentence me to death is a pretty spooky thing

psychologically that I will definitely have to report to the doctors

there at Sloan.

I think that this info should immediately be followed up with those

case studies. If it isn't, I may have to subpeona them. References

please!

Barth

www.presenting.net/sbs/sbs.html

SUBMIT YOUR DOCTOR: www.presenting.net/sbs/molddoctors.html

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