Noreen

edit: I went all the way out of the forum (didn't lg out though) and it worked. beats me. I am O neg but the poll does not count me (I tried twice to make sure it wasn't me); shows 0 people 0%

There are hundreds on the market. Omron is generally considered a good brand but a lot depends on how you will use it. A search on Amazon revealed this Portable Panasonic model for $35 with pretty great consumer reviews (I really like to get other users experiences before I make purchasing decisions). http://www.amazon.com/Panasonic-EW3109W-Upper-Pressure-Monitor/dp/B000NY6JXA/ref=sr_1_5?ie=UTF8&s=hpc&qid=1284229000&sr=1-5 That is pretty much the low price point for a good blood pressure cuff.

Just brainstorming here as you requested so please don't get overly concerned about possibilities mentioned. Did you get copies of your lab work? Do you bruise easily? I am wondering about your platelet count and possible thrombocytopenia. Did they do a full rheumy blood panel? A lot of your symptoms seem indicative of antiphosolipid syndrome. The episodes you describe could be TIAs - they can be self correcting and leave no residue that would be picked up on MRI. You could ask the doctor whether it might be worthwhile to bring in rheumatology since you aren't getting anywhere with answers. Rheumatology should bring in hematology/oncology is there are any issues with your blood work. Hope you find some answers soon, sweetie. ((hugs) noreen

Movies?! What do they do project them on the ceiling - I'd have to get contacts -LOL

Your post made perfect sense to me. Your life parallels mine. My only niece got married last month. I was able to go thankfully but in trying to get ready discovered that I had no mascara since I had given it to my son last Halloween. Now that is pathetic - I had not realized it had been that long since I wore makeup!

Passing along info on free on-line courses offered in conjunction with National Invisible Illness Week. Attend the National Invisible Chronic Illness Awareness Week Conference Workshops from the comfort of your own home. Programs will occur M-F, September 13-17, 10:30am-12 PST; 12:30-2 pm CST; 1:30 pm-3 pm EST. You listen to them live on your computer or can listen later. Listen at InvisibleIllnessConference.com - just turn up your speakers. More Information http://invisibleillnessweek.com/2010/09/08/conf-workshops/ There are 2 to 3 workshops daily according to the website. while some have a decidedly Christian slant, there are many that could help members here (i.e. life coach for career women with chronic illness, organization and simplify, etc.)

That is a very well prepared statement. In my last letter to the FDA and elected officials, I focused heavily on the cost to the American taxpayer for all the dialysis patients, the patients that would have to go into a nursing home paid for by Medicare and the fact that the gov't was paying for the studies run by the VA. Of course, it was late and I was mad so I also mentioned that the decision to choose midodrine as the first drug to pull was suspect since the retired director of the FDA Clinical Division is Medical Director for the company putting out the next drug in the pipeline. I actually think the elected officials listened and communicated with the FDA.

One thing that helps with anxiety at the dentist is distraction from listening to music. Many dentists offer headphones but you could bring your own MP3 loaded with whatever music is soothing or an audiobook if that distraction would work better for you.

That's a relief. It is a bit more official than the NY Times article. tks

That is GREAT information to keep in mind. Thanks for thinking things out for us.

You have a very tough road. I hope you have some support and are able to see a therapist. Being a 24/7 caregiver while being your child's educator is extremely hard. Aside from support I don't have a lot to offer. Has your son had a sleep study? A certified pediatric sleep specialist might be able to offer some insights. One thing I noted is that the symptoms are worse in the winter months - adding 1000 iu of vitamin D is probably an idea worth considering along with full spectrum light bulbs in the house in case SAD is contributing to the problems. With the hypermobility as well as the headache and dysautonomic issues, I am wondering whether it might be a good idea to have him evaluated for Chiari Malformation. I hope you have a good pediatric doc for your son. It is so painful when our children hurt and we can't make it all better. {{hugs}} noreen

{{{Maggie}}} I hope you've recovered from your shopping trip. You now know to always grab a cart. Leaning on the cart while shopping can help stave off symptoms. Cut yourself some slack. After all you are busy growing a human at the same time you are doing everything else. wishing you Sweet dreams and restful slumber, noreen

Debby- What did the ER doc dx it as? I have what the specialists term an unusual presentation of cervical dystonia (aka spasmodic torticullis). I have had one round of botox so far. As long as I stay reclined or in bed a good portion of the day, it is not too bad. If I am upright too long, the spasms will definitely hit and lack of sleep is definitely a contributor. When I was working full time and going to grad school my head would bounce around incredibly during night classes. I really am not sure and don't think the docs are either as to what is going on but I hate being a ceiling inspector. I hope your daughter's issue was an isolated event. I agree that addressing her sleep problem is a good idea. noreen

I take Adderal and have Raynaud's. I haven't noticed any increase in Raynaud's symptoms due to the amphetamine.

Way to go Mack! I think it is super that he has found what he wants to do and is willing to work for it. You have every right to be proud.

Hi there- In theory my vision is corrected to 20/20. However I can't read a book. For a while problems were blamed on a visual field issue - now I just don't have answers. At the last appointment, she replaced a plug and rx'd restatasis. the dry eyes don't explain all my problems however. Tks a bunch for the info, noreen

Wonderful!

Issy- Brain fog strikes again. It was the smallpox vaccine that I had the worst reaction to and the Army/Air Force had to fly in something. It was treated as rather secret and at that time you didn't question your government. Could be a common denominator with vaccines and somehow what they used at the time affected those of us with EDS as the protein was metabolized differently. So I agree it is a mystery.

Excellent Letter! I generally agree with the 'you catch more flies with honey than with vinegar' approach. I couldn't find an e-mail address on Saturday so appreciate your post. noreen

Hi caterpillar- I was just researching prism glasses the other day so really appreciate your post. I would love to be able to read a novel but my vision gets blurry and / or I can't follow from line to line. I use to read at least one novel per week so this is a huge issue for me. Please keep us apprised as to how you do with the prism glasses. I do not know whether the neuro-opthalmologist I see is certified but will check. tks again for the info noreen

Thanks, Nina. Obviously my sieve like memory has struck again.

nina- Can you give us any further info on the study of use of this drug in hypermobile/autonomic issue?

How do you eat them? Any recipes or tips greatly appreciated.