ajw4790

For my original dysautonomia dx I didn't come at the answer myself (i.e. self diagnosis).

I moved to a new city to go to grad school. I had issues my whole life, but was able to work around them. With grad school and supporting myself it was near impossible to function normally. I started having more and more issues at school. I started to try to see drs., but there was 3 month waits for everyone. So, after a few months things kinda started to fall into place when my professors got me in to see a neurologist that same week. I would have not gotten anywhere if I didn't get in to see this dr! This dr's specialty is movement disorders and was more interested in the Essential Tremor I have. Up to this point ET was my only diagnosis and I chalked all my symptoms up to it. This dr. realized there was much more going on and started to run tests.

About the same time I finally got a PCP who on the first visit with her diagnosed me with NCS/Vasovagal Syncope due to near fainting spells after showers. I was not familiar with it and researched it, it did sound quite a bit like me, but I wasn't 100% it was the answer because my symptoms are MUCH more frequent. But, even till this day this is pretty much her diagnosis and she is sticking to it.

Meanwhile, the neurologist gets back some tests, and orders Autonomic Testing. I go and do the TTT (PCP was against it), and felt awful. Afterward, in his not so subtle way, the tech asked me if I had ever heard of POTS and explained it to me. So, I guess you could say the tech diagnosed me... But, the results were looked at by a neurologist, and I was dx'd with POTS and Small Fiber Neuropathy (QSART).

I finally started to have answers....

So, without that neurologist that continued to help me a lot as time went on. I would not have gotten these answers. I wouldn't have seen him with out my professors. Which I wouldn't have had contact with my professors if I wasn't in grad school. But, semi-ironically even with getting some answers I was not able to stay and complete grad school.

Later on though, I did start using the internet more and "self-diagnosing" on things like EDS, ADHD, sleep disorders etc.

Thanks for reviewing our stories to look into this important question!

Although I need to use it more, I like my exercise bike that I ordered online. It is just the pedals and the area connecting them. It is not a large bike with a seat and handle bars. So, that way I can sit how I am comfortable. I also made sure it wasn't to noisy, so I can watch tv etc. while working out. Also, you have to make sure it is one of the heavier ones that stays still whill you are pedaling.

I also like the fact that it can be put on a table and I can use my arms to pedal, which also gives a great workout.

Hi all,

Thanks for helping me feel like am not alone in this. I just find it ridiculous that at the most only THREE internists associated with the med school in this city are taking patients. And, even if you get in to see one you will likely be seen by their residents! Just what I need is to be passed around between all of an attending physicians residents. (And they are likely to rotate frequently). I need ONE dr. to oversee my care. I don't see why this medical system needs to make it so difficult. The problem is that the attendings all teach about half of the time, so they are not in the clinic all the time.

I even called the Family Practice clinic, and the said you are assigned an attending, but will never see them. You will be seen by one or more of their residents as well.

There are a few other internists here and there locally that are not affiliated with the med school, but most are a distance away etc.

Plus, I really just don't want a dr. that overly obsesses about weight (this is the dr I am scheduled to see's specialty). I need someone to help with everything.

This was so frustrating today, and it didn't help with all the long putting me on holds, and transferring me in circles, and ending up in the wrong place twice! It was so difficult to get answers, and they all read their scripted responses and never actually talk to ME, the patient. UURRRGGGHHHHH!!!!!!!

This is so frustrating after (being I guess spoiled, sadly ) with being within 10 miles of a major leading university medical center. I had a PCP (internist) associated with the med school, and never had to deal with residents when seeing her. I did not care a lot for that dr, but at least I had one, and didn't have to bounce between residents. I dealt with plenty of residents when I saw other drs., but it didn't lessen my care, because I still saw the attending...

Am I supposed to ask to be put on a wait list or something? Is that the secret to seeing the other drs??? Hope that someone moves or passes away to take their spot with that dr? This is crazy!

Has anyone ever written a letter pleading with a dr. to take on their case???

If so, any suggestions????

The U.S. really does need an overhaul of it's healthcare system!

Hi,

I have recently moved to Springfield, IL and with every minute it is seeming like it is more and more in the boondocks... I am not a country/small town person if ya can't tell...

As everyone on here knows, not just any dr. is apt to understand or be able to effectively treat patients like us. So, by my previous drs. (and I agree) advice, they said to find a dr. that is affiliated with a medical school. So, Springfield has a small one, but getting a dr. as a PCP that is affiliated with the med school is worse than pulling teeth.

I need an internist as well, so I contacted the Internal Med. office. Depending on who you are talking to only 1, 2, or 3 drs are accepting new patients. I prefer female dr. for PCP and only one is female. I did actually end up deciding to go either way, but the first available was with the female dr.

The problem is none of the drs. were the ones on my list of drs I thought would be appropriate for me after doing research online. I called and asked, and even talked to the dr. who I wanted to get into see nurse. But, they all feed the same line that the dr. is not accepting new patients, and does not accept charts to review to possibly make an exception. URRGGHHH!!

So, then I am stuck with a person that does not seem to specialize in treating chronic illness or any other beneficial specialties/interests for a patient like myself. But, what I am most worried about is that their main focus is in treating/managing/researching obesity. In other words, I can just see going in there and everything having to be about my weight. I am overweight from all the meds, fluid retention, etc. But, that can not be the focus of my treatment. I do not want a dr. that gets hung up on things like that.

AND multiple people I talked to on the phone made it sound like most of the time I would be dealing with her residents. I do not like having multiple drs. to have to explain and re-explain to. And you have to "teach" each of them about all my medical issues etc... Because, few drs. actually have much clue about any of this.

I am SOOOO frustrated!!! What do you do when you are in a small place, with very limited drs, and none seem to be the type of dr that your medical issues require???? I feel like this is ridiculous for a state capitol city in the US. It seems like a very outdated bare bones system. How can I expect to get any positive results if I can't find one PCP (not bouncing around between residents) that can deal with a patient like us???

What do I do???

I am so frustrated and at the end of my rope on this! It should not be so hard to get a PCP! I do not even want to think about specialists yet.

Please help with any and all suggestions!!!

Thanks!!!

Hiya,

Nice to see ya again! How are you doing? I did see your one post when you came back a while ago, but was just checking in real quick and didn't respond to any posts. So, saw ya today and thought I would say hi!

I know on the news they are just talking in general terms, so it doesn't bother me. But, if someone was using it to poke fun at me or something then I would take offense to it. It wouldn't be funny if someone in the same room as me heard that and turned around and said something like "Well I guess you shouldn't be here. Lucky you, a day off and you don't even have the flu!" Not only is it rude, but it is also trying to make me feel bad for having a chronic illness. But, overall the general comments on tv about staying home when sick with flu do not bother me. Actually I prefer it, because I don't want to get sick when I am able to go out because people are sharing their germs. I don't get out a lot, so I don't want to get even sicker when I do.

Hi,

I tried Ritalin and about every other stimulant. None really ever proved to help me. Side effects with all of them that made me stop taking them. For many of them I was a super-insomniac (very little to no sleep for a week). Many of them also greatly worsened my acid reflux to the point of not wanting to eat, kept me from sleeping, just awful. Ritalin, if I remember right was different. I did not have the above effects, but slept a ton, and was a zombie when I was awake.

Everyone is different and I am supersensitive to meds. So, I do not have a "normal" experience with trying these meds.

You won't know what does and does not work until you try it. Even after a few bad trials with stimulants, I still tried the next one in line to see if it might work. So, I am not trying to discourage you from trying it if your drs. think it could be helpful.

Good luck with it and let us know how it goes!

Wow, sorry that sounds awful! This on top of everthing else you are going through! Geez! I hope that your "orange" goes down soon. Sorry I don't have much expertise in this area to share. Hopefully they will listen in regards to prednisone. maybe the cardio will be of some help. PM me sometime if you want to discuss Cincy/Columbus drs. Don't have too many to recommend, but depending on situation some maybee more helpful. Most of the good ones I had were neuros.

Hope things get better soon!

Hi,

For the joint pains etc. with your recent move did you get a new bed? I just moved and am sleeping more on a different bed with out the mattress pad it used to have etc... Anyways it is way too firm, and caused me many days of pain, before I fully realized what had happened. Sometimes, I was getting stuck in positions sleeping that I had to use my arms to pull myself out of because my back and legs were in excrutiating pain and I was otherwise unable to move.

Otherwise, as mentioned there are many previous posts about why for the majority the AM is worst for us.

Tilting the bed is one of the dr's go-to prescription for feeling worse in the AM. The theory is the if tilted the 6-10 inches, you will allow the majority of the fluid in your body to pool in your legs and not be filtered out by the kidneys and have to pee it all out at night. Therefore you wake up with a larger fluid volume. Also, when tilted at that degree it keep some of the autonomic nerves in your legs firing overnight, so that it doesn't take as long in the morning to get everything up and pumping again. But, I have not gotten it to work for me. But, I have never really fit the classical description of one that this might help.

Yes, but sometimes my adrenaline etc. takes over for a day or two, and I function possibly even better than normal. Then I crash HARD! ( i.e. I just crashed and slept 18-20 hrs. straight, no food for 24 hours, little fluid while sleeping- overall just bad!) People need sleep for so many reasons, so when you don't get adaquate sleep routinely it can negatively affect just about every body system.

Hi,

I think you have got a lot of great advice. I don't use mine that often. Probably should watch it more, but tend to either not think of it when I feel awful or it isn't anywhere near me...

I currently have an Omron that I am happy with, and have found that they seem to have the best reputation in at home BP monitoring. As far as one that will be able to detect your BP standing... if it is super low or all over the place any automated monitor is just going to see that as an error. So, like others have said you almost have to do it manually, and even then it can be tricky to get an accurate reading. You mentioned nurses having difficulty getting it sometimes, so if you were to do it or rely fully on a machine it is not apt to be accurate or easy to measure all the time.

Hi,

I wonder if it was the steam/heat of the meal that caused the hives. Much like the heat of the shower can cause itchy hives?

It doesn't sound like anything to worry about, just very uncomfortable. I guess just try to stay away from direct exposure to the steamy heat as much as possible. Use a vent fan, ceiling fan if you have it, and possibly even crank the AC.

I get itchy hives frequently and don't let it bother me or less it feels like my throat is swollen etc. It is something to be vigilant about, but to try to not let it overwhelm you.

Hope its all doing better now!

Thanks for the heads up! I was just checking in real quick and would have otherwise missed it...

And I wanted to add that the "AJ4055" listed for the countermanuevers part is me, the "W" was left off in a typo. So, to avoid any confusion figured I would throw that out there. That way if anyone has questions etc. they know to contact myself, Earthmother, or Firewatcher.

Thanks to everyone who has worked so hard on the newsletter and the documentary!!! It all looks wonderful, and I can't wait to see the whole documentary!

Hi,

This is interesting and I may have to see about this test. Odd I never ran across it before...

Anyone know if what they are describing is like MCAD with a different name or if it is actually quite different? At first I thought it sounded like the opposite of MCAD almost, but then it started to just sound like another way of looking at it?

Interesting... Something else to ponder...

Hi,

I try not to overdue the vaccines. And really don't like to get anything new on the market. I got what I needed for school, which was much than I wanted to do, especially in short period of time. I don't do the annual vaccines because they are always so hit and miss on whether or not they work on the strain of flu that is prevalant that year etc. Not to mention you have to get one so frequently (yearly). So, I do not see myself getting either. I am more wary of the H1N1 vaccine due to what was previously mentioned about its track record and that they are talking about releasing it even before all the testing trials are completed. It sounds like a recipe for disaster and I don't want to be part of it. Instead, like others mentioned I will try to take other precautions and avoid people who are sick.

I recently learned that one of my blood tests were quite high back when I got a bunch of my school vaccines. I don't remember the name of the tests, but it tests for inflammation or something of the central nervous system (spinal cord). It has since gone back to normal, but it may help to explain why things got so extra rough when I started grad school. I have had dys. my whole life, but the time I was in grad school was when everything spiraled out of control and I finally started to find out what was wrong with me.

But, everyone's circumstances are different, so what works for me may not for you. I will not be working around people on a daily basis, don't have kids in the house etc. So, I don't run into the risk of infection as much as many others do.

Mack's Mom,

Thanks for your help! I had reskimmed previous posts again, but my ADHD self did not grasp everything... I came to learn when some of the fog lifted. But, overall I don't think I am as confused now as I was before, much of the confusion I think was due to the drs. persistance that I have nothing allergy related going on. When clearly I break out in hives/rashes etc. when exposed to certain triggers. But, it must be more of a contact dermatitis-type of thing, so it sounds like she isn't as well versed in that. I will have to see about finding another dr. at some point, and depending on how things go, see about seeing a specialist like Dr. Castells.

I couldn't remember if your IgE was low as well. It is helpful to know that it does not have to be high for it to be MCAD, because if it were high it would mean that there was true allergic reactions going on.

I can get SOB and tachy with my "non-allergic" reactions, but never to the point of an ER visit. I did once have such SOB post medical procedure (heart echo with bubble study) that I went to see a nurse and dr. at a drop in type clinic on my college campus. I was walking around after it and was gasping for air. It was blamed on extreme heat and humidity that day. That time I did wonder if I was on the verge on anaphalyaxis, but gradually got better especially when I was inside.

I am not dependent on any H-1 or H-2 blockers, but also have not tried any in quite a while, and did not discuss this with any drs., because I figured they would not understand... May need to try in future. There are still just so many lose ends in my life right now, and I still don't even have a local PCP. I gotta get to finding one that will take me.

Thanks!

Yep, it always takes me a long time and many shots (they often have to go up to a stronger anesthetic) to get numbed up for the dentist and for foot surgery. AND it wears off about 3-4x as quick as they say it should. This has been "normal" for me since I was a kid, so it is not all due to meds etc. They never can believe it! I have just learned to expect it... I have seen before where for some it can be due to hypokalemia (I believe).

I could also see where for me it could be a collagen thing....

Hi,

How about something like Topamax? That is what Dr. Grubb suggested for myself. And it is supposed to cause weight loss (and not gain! wahoo! ). That is the med I am supposed to start soon. So, I don't have any words of wisdom yet. It also now has a generic, and apposed to other like meds is supposed to be safer.

Wow, sounds like quite the ordeal! Glad you are doing better and caught it early! Take an easy and rest up. Hopefully you won't have anymore of those migraines since all the anesthesia etc. is working its way out of your system.

Take care of yourself! Can't believe you are already returning to work!

Hiya all!

Yes, I have been AWOL awhile as I moved to parents house and then with them to Illinois. It has been a long drawn out stressful battle. I hope to start being able to spend more time on here again. Especially because I know that as all the adrenaline to get myself through the moves wears off I will likely CRASH pretty hard! AND I am supposed to start messing with my meds, and that is apt to have some kind of effect on me...

As far as the whole allergist thing.... Urrggghhh! I did go and she said my blood tests show I do not have mastocytosis and am not allergic to anything that was tested. She also said that IgE is so low that I really can't be allergic to much of anything, and that the symptoms that I describe are completely not supported by the blood test results. So, story of my life... nothing showed up in a way that was at all familiar to her, and because I showed no severe allergies etc. she has no interest in me. I don't think she planned to see me again, even before I mentioned I was moving. So, other than some things showing up negative the allergist was not much help.

She did explain that the contact "allergies" are a different animal altogether and do not show up in the IgE test. So, I can get tested for contact allergies, but have to see a dermatologist to do so... And I was just there... and had no luck with anything... but, this was not superspecifically addressed. So, once settled it is another thing on the to-do list.

So, I think that was all that I got out of that appointment... Oh, I guess that what is supposed to be the most specific test for celiac did come back negative. So, again that appears not to be the problem.

I guess I am still not real sure if my test results (i.e. low IgE) means that MCAD is not likely??? Anyone know?

Thanks!!!

Hi,

It is different for everyone. It depends some on the cause of the symptoms and what other comorbidities one has along with POTS. If someone has only POTS, the situation is different than if they also have EDS, Chiari, MCAD, etc. that causes other symptoms, and are not "grow out" of type of disorders. I do think that there has been many patients who developed symptoms at a young age that have as they age out of being a teenager (growth spurts, hormones etc) that their symptoms calm back down. It is a wait and see type of thing. But, try and not stress too much about on ability to grow out of it or not. More important is finding the secret of how to manage it best now with meds etc. to decrease symptoms as much as possible. This way the body can heal more, and be more in equilibrium. It is the elusive secret that we are all searching for... And while they are growing it probably will change all the time. Looking back, I wish I could have started finding what works best for me back then, and it may have significantly improved how I am currently.

Hope you find some drs. that are able to help your son out with finding a treatment plan that works well for him!

Hiya,

I wish your appointment had went better! It does sound fishy, but only you were there, so follow your gut instinct. Ask him for proof of his treatment method (journal articles). Make sure he is a licensed physician, and can you check the board to see if he has any complaints etc. filed against him? Not sure how all that works... Follow your gut and consider the dysautonomia specialists and their published work out there when weighing theories and treatment options.

Good luck!

Sorry that you are going through something like this on top of everything else. It sounds absolutely awful, and I really don't feel I have the right words. Everyone has had such great words of wisdom, but I just wanted to let you know that I am wishing you the best in this awful situation.

Hi,

I know you are in Columbus too, (well, I was... now in Cincy) I wonder who you went to go see? I saw a neurologist that did some testing that was for Fabry's disease. (weird, you posted this, I was just looking this back up last night!) (among a multitude of other things... I think I got 7+ tubes drawn that time too!)

The test that tests for Fabry's for me came out high, but no one ever addressed it to me. I think in the notes from the test it says that I may be a carrier (test not definitive), but that I do not have it. Not sure, but had just kinda had hoped that since no dr addressed it with me or made the diagnosis, that I don't have anything to worry about. My alpha galactosidase was .251. So, hopefully nothing to worry about...

I wish they would have discussed it more with you, instead of sending you out to your car upset! Sounds overwhelming! I can see where you are concerned about the testing. I think that they are just trying to be thorough, and look for any possibilities. The fact they drew 7 vials means that this was not the only thing the are testing for. They are just wanting to look into any possibilities diagnosis-wise. Try not to worry too much about it. I have not ever seen it discussed in any of the dysautonomia information I have seen, so there does not appear to be much link between the two.

I hope that the results don't take too long and that it will be negative for Fabry's.

Try not to worry to much!

Sorry I have no words of advice, but I had been wondering how all the insulin stuff was going for you, and how the testing had gone... Wish you had better luck with the testing! How did they screw up the 72 hour test? That is crazy!

I hope that you do find out something helpful soon, and that they don't make you redo the test!

Hope others have ideas for you!

Hope you have some better days really soon!