Noreen

Certainly valid question esp. when you are dealing with a child. Many children with special health care needs have an action plan to implement when something happens or goes awry. Parent to Parent networks have such action plans sketched out usually. Perusing them will help you gain insight into the type of things to try to include in your plan. The final step is going over this with the doctor or the NP in the pediatric office.

By thinking through things, it may end up that his having a nurse come and administer IVs is a good option. Dys is too weird and individual and is so hard on all concerned.

wishing you the best,

noreen

Some of their past events sound really interesting. They have a few on Sleep and Circadian Rhythms and several on Epigentics.

Wish my brain would cooperate. One of the joys of my working life was attending a conference where the speakers were experts in their field.

Tks for posting the link. I hope if someone is able to watch they can report back to us. I, unfortunately, cannot stay awake for a full hour television program!

I have the same EDS dental issues as Rach. I still have several amalgam fillings along with beaucoup crowns.

As nowwhat says, there are cheaper houses.

Ryan-

Thanks for posting that link and for your excerpt - it was extremely helpful in understanding a complaint common to many of us. You will have reduced anxiety for many.

I will have to re-read the article and concentrate on the meditation suggestions

tks again,

noreen

hope you continue to feel better, issie

((hugs))

noreen

Jana-

So sorry about your fall. I hope you are well on the way to healing and the bruises aren't too bad.

I did not know you were on coumadin. May I ask for what condition?

I have been trying to avoid it.

tks,

noreen

Sarah-

I have the same problem with slumps if I wait the full 4 hours. My last fall/faint was at 3 hours 40 minutes.

It is very tricky.

Grate or slice raw ginger into a large bowl. Add boiling water. Throw a towel over the bowl and your head and breathe in the steam for 5 minutes or so.

You may add a slice or two of lemon if you so desire.

Ginger is a natural antiseptic and anti-inflammatory.

nowwhat-

Supine STAT - aside from describing me - seems great as a diagnostic tool.

I like that

I totally understand about your wanting to continue to work. However, if there is any way to cut your hours say down to 80% for a few weeks while you try the meds the MD is suggesting it would give you a bit of time and energy to focus strictly on your health.

wishing you the best,

noreen

You have succinctly stated your wife's health issues and you must be an extraordinary individual to go through everything you have. I can/t imagine how heart broken you both must be to have to give up your baby for this period. Unbelievable stress - unfortunately stress plays into dysautonomic function so that is yet another factor to keep in mind.

Another member, Endure, had/has similar problems with temperature regulation. His problems started from a drug 10 years ago, albeit an illicit one. He is in Australia so not able to avail himself of places like Mayo or the National Institute of Health Rare Disease program (http://rarediseases.info.nih.gov/Resources.aspx?PageID=31).

I think you need to talk to the doctors about going to Mayo. You have so much testing already done but are missing the autonomic piece.

I hope the radiating therapy is almost done so you can move on to attacking the dysautonomia monster. Feel free to post here anytime to connect with people who understand (as much as is possible).

Wishing you all the best and sending positive energy your way,

noreen

It ended up being a glycogen storage disease - Pompe Disease.

Over a thousand people submitted answers, so although this was the first one, I think this will come back as a fairly regular feature. That is if Dr. Sanders has the patience to wade through the ridiculous - an unbelievable number of people thought the problem was wearing her hair too tight and never looked at prior responses.

I really didn't know if it was muscular dystrophy or Pompe Disease and logged on this morning to find out.

Julie-

I hope Mack's setback is short lived and he is back to himself pronto.

take care,

noreen

I went through a 4 month period last year where my temperature ran the same for 6 weeks and then changed to another reading for 6 weeks. It was truly bizarre. It did not change at all during the day no matter what I was doing.

I had one cycle of 96.7 followed by the next 6 weeks at 100.8. No explanation was found but during this time I did sweat at all.

Just chalked up to my weird ANS stuff.

Lisa Sanders, MD, author of "Every Patient Tells a Story" is challenging readers to dx this case.

As I know many of you are more adept than some docs when sorting through these things, I though you might like to play - link to story

10 yr old with hair loss, elevated liver enzymes and elevated CPK.

The correct dx gets an autographed copy of Dr. Sanders book.

Jennifer-

I am sorry for your mother-in-law-s recent dx and understand her anxiety.

This board helped a friend -

http://bcsupport.org/

They have a newbie section and the members are very knowledgable and supportive. It may be too technical but you can check it out and be the judge.

wishing you all the best,

noreen

Hope you find helpful answers!

Safe travels,

noreen

I do exercise, I am better...I am NOT cured (unless you take the other definition of what all this salt does to a ham )

Eureka! We are all 'cured'!

LOL

Just curious to know if anyone uses the support hoses daily. I heard they are very uncomfortable. But if they really work, it would be worth the misery to wear them then to be miserable with the high bp.

Thanks for comments!

I did a forum search for you so you can get a feel for how it helps people -

http://forums.dinet.org/index.php?app=core&module=search&do=search&andor_type=and&sid=76dcc6c8ba30f3326fe59b387ac718ab&content_title_only=1&search_term=compression&search_app=forums&st=50

At the top of the board Mighty Mouse has a post with links to where to find compression hose.

hope this is helpful as you determine what will help you. I have a very bad wrist and hands that do not always cooperate so I cannot wear compression daily

What dose benadryl do people take?

Years ago I took it as a sleep aid but could only do 12.5 mg (half a dose) - makes me nervous to try it if it is going to knock me out

Wow. I bet the bibliography would be fabulous.

Access to the Dept of Health library is what kept me working long after I shouldn't have. I still miss it.

For post-viral onset, certainly this makes sense, but for us genetic types there is some mutation at work. The entire female line of my family has DSPD and my son has it as well. My mother and grandmother showed minor signs of autonomic dysfunction from fainting to migraines, but nothing like what I exhibit.

A genetic predisposition along with an exposure is what would make it worse for some than others. So a seemingly minor virus contracted at a susceptible time would flourish in some. If all of this happens during stressful time (or causes sufficient stress) the adrenal portion of the HPA access also gets stung.

So I am thinking along the lines of a virus without overwhelming symptoms settling in and causing mayhem in those of us with genetic susceptibility.

He is absolutely convinced that there is a hypothalamic dysfunction at work in all of this, from the sleep disorder to the whole POTS thing. Unfortunately, very few endocrinologists even go far enough to have more than a basic understanding of any hypothalamic issues since there is almost no treatment other than to replace the missing hormones.

An enterovirus attacking the hypothalamus and disrupting the HPA function certainly seems the most logical. But since the sequelae are not visible like polio or hand, foot and mouth disease, it is unlikely to be researched.

I am so very glad that you have had a measure of success at Hopkins. It is always good to hear some good news for a change. Let us know how the wheelchair goes and how you are feeling.

What blood thinner do they have you on?

[quote name=rach73' timestamp='1300174

I have also just been diagnosed with the skin condition hidradenitis Suppurativa after being fobbed off for years. I moved Dr's surgeries and was diagnosed in 8 days. Its a horrible painful condition but I am lucky for ten years its never moved past stage one.

Just makes me wonder if I am some sort of collector of rare syndromes and diseases? LOL

Thanks again

Rach

Hi Rach-

Hidradenitis suppurativa is not uncommon among EDSers. I have had the most success with icthammol ointment.

Here is a link you might find useful -

http://www.hs-support.uni.cc/forum/hidradenitis-suppurativa-support/list-of-remedies-to-try/