Noreen

scheduled to meet with cardio on thursday--and i will review all with him. PCP suggested that issues were related to a muscle strain

(had pneumonia--lots of coughing--still recuperating) however, this does not feel like something awry with the musculature...

Cordelia-

What did your cardio have to say about the neck symptoms?

Are you scheduled for a carotid ultrasound?

The DMV site said we had to mail the form for plates (no cost) so I did. I understand it can take two weeks, so I'm still within that time frame. What I am concerned about is are they going to question the illness the Doctor put as it's so unknown (it's not like MS or Lupus)...? I was wondering if he should just put OI but he wanted to put POTS. Maybe I'm being extra paranoid because of so much going on.

The DMV cannot discount what the doctor said in filling out the form. In NY there are specific questions asked on the form (e.g. inability to walk X feet) and the doctor answers those questions and lists the reason/diagnosis.

I would suggest you get a rear mirror placard. In NY you get your doc to sign the form and bring it to your local town hall.

Julie is correct and I understand your concerns.

Can you get a copy of the full article? I am unclear as to their methodology and at what point the orthostatic intolerance was measured. These would be discussed in the article.

Lieze-

Oxygen to the mom first. You need to get yourself taken care of now.

As an inpatient they can see what the problems are while you are eating. Don't fret over the label, just work on solving the problem with the help of the doc.

I think this response from Dr. Watkins of the Autonomic Disorders and Mitral Valve Prolapse Center of Birmingham, AL addresses what is going on with you.

Q. Is there anything other than medications that will help keep heart rate down?

A. In general, regular aerobic exercise will help to keep heart rate down. This is due to conditioning and training. However, in patients who have mitral valve prolapse/dysautonomia this is not always true. If the patient is very aware of an increased heart rate and a forceful heartbeat, in general it will take medication to control the heart rate. Medications may include either beta-blockers or calcium channel blockers. Often a combination of a beta-blocker plus regular exercise will eventually lead to a more normal heart rate, which can then lead to taking medication only on an as-needed basis.

http://www.mitralval...adrwatkins.html

Hi-

that is interesting info. Do you know why he said coffee? I am wondering if it is the caffeine and whether tea might work.

Has anyone else been given this advice and know why it might work?

As Oprah said yesterday, being denigrated is the worst feeling there is - much worse than betrayal.

Be kind to yourself. When you are feeling a teeny bit better, perhaps you could volunteer an hour or two a week to help out a local non-profit and actually speak with people.

Livedico reticularis occurs with APS - antiphosolipid syndrome and can occur with Ehler Danlos. Getting a lupus dx is not clear cut - there are many criteria. Any autoimmune disease dx usually takes a while to get a firm diagnosis.

Try to relax and not worry about it. Sufficient unto the day are the troubles thereof and all that. Stressing out about the tests will only make the dysautonomia monster rear up and bite.

Glad you are feeling better.

I hope you are able to get a good night's sleep to speed your full recovery

I have hyper POTS and I HAVE to use Turmeric or my pain is unbearable. I laid off of it for a few weeks to see if it made a difference and it does. My NO levels were tested at normal.

How do you take turmeric, Issie? dosage, brand, etc.

tink-

You should definitely mention the problems.

Here is a link to a diet for gastroparesis -

http://www.gicare.com/diets/Gastroparesis.aspx

hope it helps,

noreen

Since this is relatively new to how your body works I am wondering if adequate water consumption may play a role. It almost seems your body is holding on to the water you consume and not releasing it into the stool. Increasing your water intake and charting the results over 2 weeks might give you some needed information.

People are in their own little world -- I think we overestimate how much they think about us, so I guess it doesn't really matter whether we hide it or expose it 'cause they don't really care anyway!

that has been my experience, also

I am so glad it is working for you, Emmy!

It seems, though, that I haven't read of anyone with EDS having success with the protocol. Do you know if I am wrong?

No worries, doc. When they beamed me aboard, they implanted a chip to keep track of my faulty BP & HR. You're off the hook. We've got it covered

That is a good one, Julie!

(but I have fantasized about such a chip with a display in one of my freckles)

Fortunately I am not without support. My pygmy goat does the vacuuming while the rabbits tackle the dishes. Although driving has gotten to be a strain, my zorse is almost trained.

Dinet's list of UK docs can be found here.

Frustration with the medical profession is a common theme here and crosses all borders.

I thought I'd move this back up since we have quite a few newbies asking for tips. It is a not so oldie, but still a goodie!

Thanks firewatcher-

It truly is a goodie. I would add the Syncope Countermeasures page from this 2009 newsletter from Dinet.

I yearn for the days when vertically challenged meant I was short as opposed to taking up advanced studies in horizontal living.

Have her vitamin D level checked. There is a school of thought within the EDS community that lower levels of Vit D can cause lack of/reduction in muscle tone.

hope the suggestion is helpful

You will be so intrigued with the wealth of information in the newsletters. They truly are excellent thanks to wonderful volunteers.

The busy bee volunteers have been busy improving and updating the main Dinet page. So if anyone hasn't checked it in a while, it is definitely worth your while.

Thanks for all of the great suggestions. Reen, that diagram was great! So helpful and it totally made sense.

Glad you found it useful. I hope everything settles down and you get relief quickly.

Hi Lisa-

You have had a roller coaster ride with good news and bad news. Absolutely wonderful that your new doc will help you. Not good news about SSDI. On another board a dozen members were toting Allsup in getting the SSDI - just mentioning it in case it would help you - after reading their stories I wish I had gone that way.

Take care and welcome back,

noreen

Hello TimK-

Welcome to the site. You sound like such a wonderful man and husband. I am sure your support has been instrumental in your wife's ability to get through all this.

So everyone knows category C is when there is no info or only animal studies - from drug.com -

Animal studies have revealed an increase in the rate of embryo resorption, reduced fetal body weight, and reduced fetal survival when administered in doses up to 13 times the recommended human dose. Animal studies have failed to reveal evidence of teratogenicity. There are no controlled data in human pregnancy. Midodrine is only recommended for use during pregnancy when benefit outweighs risk.

From Medscape

Pregnancy

C - Fetal risk revealed in studies in animals but not established or not studied in humans; may use if benefits outweigh risk to fetus

So it is a risk versus benefit analysis. Many doctors automatically say no to any drugs during pregnancy without doing the research. Falling during syncope presents a huge danger to the fetus and so would, in my opinion, justify the use of it during her pregnancy. Taking the smallest amount while maintaining efficacy seems prudent. What options did the 'No' doctor offer you?

ana-

thanks very much for the reply. Your explanation of the test was great.

Hope you have a good day.