Noreen

cooler. Portland, OR temp- Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec Year ?C 4.1 6.0 8.3 11.0 14.1 16.9 19.7 19.6 16.9 12.6 8.0 5.2 11.9 ?F 39.4 42.8 46.9 51.8 57.4 62.4 67.5 67.3 62.4 54.7 46.4 41.4 53.4 Source: PORTLAND data derived from GHCN 2 Beta. 1426 months between 1873 and 1991

If there were no financial considerations, I'd move to Hawaii. DINET has a doc listed in Honolulu, the average temp ranges from 72 degrees to 80 over the course of a year and the humidity is a little over 60 %. If they would just do something about that sun that keeps shining, it'd be perfect.

Heavy metal poisoning presents with a bunch of weird neuro symptoms - sound familiar? When there is suspicion of exposure, such as occupation or in your case - your house - the doc would be negliglent not to at least run the test. For the zebras amongst us, when they've run everything else, they run heavy metals to see if anything shows up. Lead is the worst of the heavy metals due to it being everywhere - it is an element and doesn't disappear so it is still near old heavily travelled roads, it is still used for painting bridges and in aviation gas and batteries. The body treats lead as calcium so if lead is ingested instead of calcium at various crucial points, the human body transports the lead into bone for later use throughout the body and organs when calcium is needed. For those of us around prior to leaded paint and leaded gas being banned in the 70s, we have many cavities as a result of our body building the teeth partly out of the lead stored through exposure. The lead is still is our bones and organs and is one of the major reasons why older women (and probably men) should supplement with calcium. Lead has been implicated in cardiovascular disease and high blood pressure issues by Ellen Kovner Silbergeld, a MacArthur Fellow. Here is a link to one of the papers for those interested - http://ehp03.niehs.nih.gov/article/fetchAr...0.1289/ehp.9785

I find it impossible to think and ended up having no idea why I could not do things. I call it brain smush. Once you are in that I don't know how you have the presence of mind to go to the ER or take your temp. It was only after 2 summers, finding this forum which discussed cooling options, and having a new neurologist appt. that I actually started keeping track of things. I would take my temp occaisonally but with not memory not keep track of it or not remember to bring it to docs. I wonder if our panic attacks get diagnosed more in the hot months? Basically we can't describe what is going on and are acting on survival instinct yet we may describe being totally freaked to docs If I were in your shoes, I would check out the post on cooling vests and or the link I posted here. Just as a precaution because I could not imagine having children that young and it hitting you. hope everything stays cool for you noreen

Thanks for posting about the temporal scanner therm. I had been reading up on them and thinking of getting one but was wondering with our issues what would happen. I thought I had a fever last night but nope - 98.2. I took it with the oral digital thermometer and was able to get a reading 97.9 - same reading I got with it Monday morning. While I can't always get a consistent oral reading - it can start to vary widely if my tongue moves at all - generally the oral runs .3 degree less than ear. This is more than I ever wanted to know about temperatures. I want a life. noreen still at 98.2

Thanks for reporting back. glad things went well. I am curious if the MRI is going to be done laying down or upright? I have a hunch they would find something on me if they observed the spine while gravity while pulling on it but heck would they listen to me? We are pretty much fine while we are laying down - why are all the tests done that way? Don't worry about the arsenic. I used to work on the Heavy Metal Registry - all results are sent to a state DOH office. When my doc ordered tests for ALL heavy metals, my co-workers said 'they really have no idea what is wrong with you, do they?" I'd be surprised if at least half the people here weren't tested at one time or another for one of the heavy metals - lead (pb) was my specialty.

Have you seen these active cooling vests sue? http://www.msolutions.org/Softiceactivevest.html Out of my price range but if the neuro will write a script I will go for it over the coolsport type - I am so afraid of the brain mush from heat and I think I may be be in need of big guns now. the cool thing about this one is they have add'l pieces to attach like a hat, your wrists, ankles, etc. Since it has been over 2 minutes, I have forgotten but I think there is a car adaptor for the rolling ice chest.

I am petrified of the upcoming summer months. After 2 years, I knew I was heat intolerant but I did not put together low grade temps and smush brain with everything else going on - no real support here to bounce things off. I'd much rather freeze - Raynaud's be darned - eventually you warm up. The weird thing is even with chills there is no alteration in body temp during this period.

yup the questions were for Endure. Eureka - a way to afford all our medical expenses - we grow fabulously insulating ear wax! Industry is always looking for something to keep machinery at a constant temperature - the applications are endless. Oh wait - I clean my ears periodically with hyrogen peroxide.

Endure_ Your wild fluctuations sound incredibly hard to live with - I am so sorry. How in the world do you keep track? You have such experience with this - do you just know by now? Do you find it harder to think when your temp is elevated? Sorry for the barrage of questions but I am desperately trying to piece things together. noreen

Tks Simmy- Have used more than one. Both of these are ear digital types Have used the thermometer I usually use on my son and it registers fine. Have changed the batteries in this one and it has not altered the results The only other kind I have in the house is an oral digital. Due to my dry mouth issues, I can't get a consistent reading one minute to the next.

Ohh!... that's good!

{{{Jana}}} Positive energy and thoughts go with you. Prayers for your doc that he is guided to find the source of the problem quickly and he is able to fix it. Praying for strength for you as you must face yet another ordeal, dear sweet one. noreen

Exactly Simmy. I was casually noting low grade fevers to tell rheumatologist as part of autoimmune issues. I actually did a science project when I was in 8th grade where you took your temperature every hour over 24 hours (okay I cheated - it took me almost a week to fill in all the hours but I wasn't sick - back in the dark ages you had to use an oral mercury thermometer for 5 minutes). The results, as my feeble mind recalls, were as stated in the Wikipedia excerpt - a variation of half a degree over the course of a day. What is crazy is that there is NO variation. Still at 98.2 last night at 2 AM, this morning at 7 AM and 9 and 9:52. Did some housework between 9 and 9:52 - should be a rise in normal people I would think.

thanks Rama - sure could recommend some docs for a CME course with you

I have been charting my temperature along with a bunch of other things for a while. I hadn't been methodically charting but it was elevated at 101 for a few weeks and then reset itself to 98.4. After a few days of this new weird number, I started charting. April 7 through evening of the 9th it was at 98.4, no matter the time of day. I missed taking it on the 4/10 and 4/11, on 4/12 my temperature went to 99.7 and stayed there through the morning of May 16 - middle of the night, first thing in the morning, noon, dinner time - always the same. Last night I was actually surprised when I got a different reading - 98.2. This morning 98.2 - noon 98.2 - 2PM 98.2 - 6 98.2 - 8 - 98.2. So now I guess 98.2 is my new normal and time will tell whether it resets after 5 weeks. From Wikipedia: The time of day and other circumstances also affects the body's temperature. The core body temperature of an individual tends to have the lowest value in the second half of the sleep cycle; the lowest point, called the nadir, is one of the primary markers for circadian rhythms. The body temperature also changes when a person is hungry, sleepy, or cold. Temperature control (thermoregulation) is part of a homeostatic mechanism that keeps the organism at optimum operating temperature, as it affects the rate of chemical reactions. In humans the average oral temperature is 36.8 ?C (98.2 ?F), though it varies among individuals, as well as cycling regularly through the day, as controlled by one's circadian rhythms with the lowest temperature occurring about two hours before one normally wakes up. Body temperature normally fluctuates over the day, with the lowest levels around 4 a.m. and the highest in the late afternoon, between 4:00 and 6:00 p.m.[1][5] (assuming the person sleeps at night and stays awake during the day). Therefore, an oral temperature of 37.2 ?C (99.0 ?F) would, strictly speaking, be normal in the afternoon but not in the morning. An individual's body temperature typically changes by about 0.5 ?C (0.9 ?F) between its highest and lowest points each day.[1] Temperature is increased after eating, and psychological factors also influence body temperature. Does anyone have any experience with this or any wisdom to lend?

Half a dozen whiplash injuries. Current neck issues - Nerve impingement at c5-6 and 6-7 and cervical dystonia although specialists are debating amongst themselves because the presentation is unusual. Dx'd with hypermobility syndrome in 1998, probable EDS with vascular component given my stretchy skin.

Great newsletter! Julie's story is awe inspiring. Kudos and thanks to all the hard working volunteers. Your work is greatly appreciated.

If you have a rolling desk chair, it would be handy in the kitchen to roll around - chopping vegs at the table, etc.

Swanson Vitamins organic green tea is good - priced right too as long as you are buying vitamins anyway and paying the freight. I also like Lipton Green Tea with lemon. I actually think Celestial Seasoning green tea doesn't always taste right - probably because I am not getting the exact water temp or steeping for the same time. I like other Celestial Seasoning tea just not their green tea.

It doesn't work spacing it out throughout the day for you? My symptoms vary wildly so forgive my asking - I honestly have no idea. I can go from needing to use the ladies room every 20 minutes to becoming a camel and not going for 5 hours all while consuming the same 84 to 90 ounces of water daily. It obviously makes planning difficult.

Issie.- You are right about sleeping through the night. It probably plays into my pain decreasing along with the exercise increase. I am wondering if those of us with pooling in out feet and legs would not do as well and those with more respiratory symptoms might find it worth a go.

It is going to depend. We have to drink at least half our body weight in ounces (i.e. 150 lbs = 75 ozs.) Obviously you were low or would not have felt thirst. I don't think it would work all the time, though. Other times your sleep will be interrupted by potty jogs.

I don't understand the part about the legs being flat if your upper torso is elevated. I sleep on 25 in by 25 in pillows (Martha Stewart at Macy's) under my regular pillows which brings angle of incline to between 25 and 30 degrees from rib cage up. It's helped GERD and may have helped other symptoms but I was trying a lot so can;t be sure. I would be hesitate to do anything that hurt my sleep and a full body incline made me have those jerk awake attacks in the past - it may not have been a good trial and I may just be leery of anything interfering with my sleep. Having an adjustable air bed may be the reason I can't see how the feet stay flat - I don't know. I'll be interested in if it helps you and how it affects the nonPotsy spouse.

There are some good ones here. I know Simmy, for one, will appreciate having this thread come forward. Pavement Inspector will have to go one the list.