Quote:
Originally Posted by en bloc
Midodrine is a vaso-constrictor and yes it's fast acting, but short lasting. It is helpful for the POTS by raising BP which helps the tachy rates. I take it along with Florinef (another common med for POTS). However, you said your BP doesn't drop upon standing...just that your HR increases. Is your HR high otherwise? What does it run on average not during events?
Mayo is best if you want work up all at once. It will be multiple tests a day. They are efficient for sure. What I don't like about them (and many others who say the same) is that they do not look outside the box. They have criteria for everything and if you don't fit 'clearly' within the criteria, then you don't have a diagnosis. This is especially true for autoimmune conditions...and even PN. This can make it difficult for patients like you with lots of negative tests but clearly something going on. I can guarantee you that they would never say 'you were just having a good day' with the gastroparesis. If the test is negative...it is negative.
You should get online and review each of their websites for info on comprehensive work-ups. Make some calls and consider insurance options. There are lots of good hospitals...but I only have experience with JH, Mayo and a couple in the Dallas area when I lived there.
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When resting or not standing, my HR is usually normal to low (depending on the time of day) during the day resting may be anywhere from 65-80, at night while laying in bed, its usually 50-60 tops, sometimes if I am real tired it'll be around 48/49...
Usually when I do my a.m. bp/hr log, my hr will jump from 60-65 to 90-105 range... then there are some days when it'll have a normal jump around 20 and others when the jump will be 50... no real rhyme or reason that I can see.
I would like a work up all at once, and it seems like Mayo is the only center that works like this? maybe cleveland clinic? but with all my various system involvements, I am thinking mayo may be the place for me...just gotta try and find a way to fund it.
Quote:
Originally Posted by mrsD
I just went back to your original symptom list.
Seems you have several symptoms of chronic pancreatitis.
fast heart rate
pain in the mid back
nausea
bloating
weight loss
blood sugar abnormalities (feeling cold etc)
http://www.webmd.com/digestive-disor...s-pancreatitis
Since many of your initial symptoms remain and are gastrointestinal, I'd focus on that. Treatment is usually dietary, by avoiding alcohol, and avoiding a high fat intake. |
I will mention this to my gastro, I see her Thurs. for a colonscopy/endoscopy double dip... I have a feeling she will likely say its not relevant because dont have any stomach pain, or enlargement, although it makes sense to me, i certainly have a lot of the symptoms...not to mention the GI stuff could be totally unrelated to the SFN/autonomic stuff (seeing as how the GES keep coming back ok) and the GI stuff far predated the other symptoms.
Quote:
Originally Posted by daniella
Hi
I am sorry for all you are facing. When I came to the boards 5 years ago I was 28. Like you I had every dx test multiple times,traveled to hospitals out of state,many specialists. So though I know it may not help you are not alone. A few thoughts and I am sorry if you mentioned it.
First though I did not go to Mayo but I did send my records for them to review to see what they thought. You may want to call the neurology dept and ask them about that before you fly out. Also did you state are you being treated right now with any meds or other? I ask because out of all the neuros and other specialists my anestesologist/pain doc gave me insight and direction too. Now for myself I still dont have a why behind my peripheral neuopathy and I do have RSD to. I have other symptoms as you do such as eye problems etc as well. Obviously not knowing the why behind makes it harder to treat.
Ok sorry now to my ?s before you stated you were healthy but can you think of anything even if it was small such as being sick a lot, did you fall,injury,break anything, meds or other you were on?
I wish I could offer more suggestions. I am not an expert like others here on medical but I do know what you are going through the frustration,fear,pain,confusion. On a side note make sure to keep all your records so you can take them to the next apt. Also anything you have tried meds or treatment wise. You may want to keep a diary too of pain and symptoms. Hang in there
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Hi, thanks for the kind words, I am currently not being treated with any meds and actually have never taken any meds in my lifetime, except for some prilosec years ago for heartburn.
Thinking back prior to this, I would say starting last July 11' I began to get sick kind of often with what felt like mini-flu (with no temp tho) or maybe mini-colds once a month, or a day here and there when I just didnt feel right, then a few more severe episodes in Oct. and Dec. 11', then the big downhill episode in Feb. 12' and a week long one in March when I was really sick with sore throat, congestion, fever, malaise, for a week, felt like a true flu...
In the years prior to all this I felt pretty good for the most part, was in law school, had a lot of stress, had some anxiousness sometimes, headaches every now and then, more milder GI problems...