On My Own

[Mary P]

I'm wondering if anyone 'out there' has had to fend for themselves as I've had to? It takes months to get an appointment with my doctor, so in April, 2007, I knew I had to learn for myself. Eventually I diagnosed myself as having orthostatic hypotension but wasn't believed by my doctor or family. Has anyone else had this problem of not being believed?

Then, on seeing a neurologist, he confirmed what I was right, but added the term Pure Automotive Failure' With his report I was believed, but my own doctor knew nothing of my condition and knew of no one else who might help me. I really don't blame her for thisI'm grateful to have just now come upon this forum and am anxious to communicate with others 'in the know'. I would be most grateful if someone could advise me of a doctor in the Toronto area who treats people with my condition.

[mrsdavidson8605]

Hi,

i'm not totally in your shoes, but I HAVE had to fight every doctor I see. Thankfully, my husband has been a HUGE help. It's crazy, but he gets further with the docs than I do! If I want something done, HE has to call for me!! I'm 27 yrs old and I feel like i'm 12 sometimes.. hang in there!!

[Megan]

I had to fight a ton of doctors! Luckily my family did believe me. As far as a dr in the Toronto area, I'm not sure, but I think somewhere on the site there's a list of doctors...maybe that could help you. Anybody want to help me out with the link here?

Meg

[Mary P]

Hi,

i'm not totally in your shoes, but I HAVE had to fight every doctor I see. Thankfully, my husband has been a HUGE help. It's crazy, but he gets further with the docs than I do! If I want something done, HE has to call for me!! I'm 27 yrs old and I feel like i'm 12 sometimes.. hang in there!!

Hi kansasgirl,

Thank you for your reply. I guess I have to feel lucky when I read that you're only 27. I didn't begin to have health problems until I was 69.

When I speak of family I mean my 4 sisters, two of whom are nurses. From my research I've learned that medical people in one's own family are the ones who are least likely to believe. One nurse sister said in a letter, "I just don't understand you". Another said "I deal with sickies at work. I can't deal with sickies in my family". I think that this latter sisterone is actually afraid for me and doesn't want to talk about things. I don't live close to any family so this makes things difficult for me. No one has seen me to see how I am on bad days. However, I'm grateful to have wonderful friends and church family.

A nurse friend confirmed how my nurse sisters reacted by saying that a nurse in one's family will offer all manner of support to all except family. I do have a son who offers 'man' support but there's no emotional support there.

Your husband sounds like a great man. If my husband were alive he'd be the same for me.

[Deb]

When I read your posting, I almost cried. It brought back so many memories from when I was trying to find out what was wrong me. I wish I could slap your sisters for their attitudes! I relied a lot on my husband's support. He's a fishing guide and knows lots of doctors (they all seem to like to fish) and he was able to pull in a favor with someone who knew the head of the Neurology department. It was at Christmas and no one was going to be able to do the TTT for weeks. Fortunately I had the test on Jan 30th and was able to start medications the next day.

So, my advice to you is to do some research into locating a doctor in your area and then find someone who knows someone who can get you in for an appointment. Make a list of your symptoms and take it with you. I was also diagnosed with pure autonomic failure before it was narrowed down to POTS by the TTT.

I'll be thinking of you. Good luck.

[Mary P]

I had to fight a ton of doctors! Luckily my family did believe me. As far as a dr in the Toronto area, I'm not sure, but I think somewhere on the site there's a list of doctors...maybe that could help you. Anybody want to help me out with the link here?

Meg

Thanks for your reply, Meg. The neurologist was most helpful and caring. However, it's my own doctor who isn't, and with this condition I'm sure I'll have to see her a lot once I get the initial help from someone else. I did find the name of a doctor in Hamilton who I'm going to call. I'll ask him if he knows of another doctor who lives closer to me. I'll let you know.

[kitchmill]

I've had the same issues. It took forever to get a diagnosis, and it was a series of coincidences that I finally did get a diagnosis of POTS. But since I am considered mild, I still have problems with people, including DH, understanding what I go through on a daily basis. My DH doesn't understand that I am too weak in the mornings to stand up while I brush my teeth, or too exhausted after working all day to stay up late and do household chores. We have 2 young children and I feel like I am cheating them out of a lot because I can't take them to a ton of places.

I've been trying to discuss the side effects with my cardiologist to see if there is a better way to manage things or any other medications to try. So far he's good with medications but not so good at listening to what else is going on. My next appointment is in a week and a half... we'll see how that one goes! At this point, I still consider myself lucky that I actually got a diagnosis after YEARS of complaining about my grey-outs and being told that "low blood pressure is good, eat more salt."

[bellaluna]

I had to do a double take looking at your post- my name is Mary P too! And I'm with you all the way on fighting docs. I have been fighting with multiple docs since September (which is nothing compared to some here) and just a few weeks ago found a doc who actually believes something is wrong with me... it can be the worst part of all of this- being so ill, but not being believed.

Welcome to the board- you'll find a lot of great support here, from people who really understand what you're going through.

Mary

[bluesky]

I am new and just posted an introduction but I wanted to tell you that I *totally* understand your feelings and your position. I've been fighting doctors for six years. I first became really sick about 4 months after my husband died of cancer and I could not, could not, could not get my doctors to think of anything past depression. I wasn't depressed! I was desperately, desperately sick. I've been looking for a doctor who is really interested in helping me since. So far it's been 9 failures and one doctor who is trying but he's a nephrologist and it's out of his sphere. I've thought recently of giving up and just taking the articles I've read on POTS and asking my regular doc to try medications. I don't even have a diagnosis so I'd just be guessing. But it's better than living out of a car with my kids because I can't function and can't work.

Anyway, please don't be discouraged because so many doctors don't believe you or know what to do with you. When my husband got cancer - which was a tumor the size of a football in his chest, mind you - it took him a year to get a diagnosis. Apparently, these things aren't always easy to see on CT scans or MRI's, at least tehy weren't in 2000. At one point his cardiologist took me aside and told me she thought he was faking it to get disability. I was frantic because he was clearly very, very sick. Literally 4 weeks later when he finally was diagnosed and finally saw the oncologist, the oncologist took one look at him and said to me, "he's got less than three weeks to live unless we can guess the right chemo and it happens to work". Don't worry - you don't have cancer! But I just tell this story to show that doctors can be so wrong minded and so stubborn. If their tests tell them everything's "normal" it makes them blind to what's sitting right in front of them.

Anyway, I wanted you to know that I understand what you're feeling. I know it's easy to be discouraged. Try to just keep going no matter what the doctors say - that's what I'm trying to say to myself too.

[jump]

I've thought recently of giving up and just taking the articles I've read on POTS and asking my regular doc to try medications. I don't even have a diagnosis so I'd just be guessing.

Actually, this has been what's worked best for me. I live in a very rural area, and it took me four years of complaining to my PCP before she OKed me to see a cardiologist -- and even that was only because I was about to run out of health insurance. The cardiologist diagnosed me, but the few neurologists within driving distance really don't know much about POTS, and, like another poster said, because mine isn't crippling (I can still work part-time, I can still do a lot of things I love, like walking and hiking, on some days. Just some days I can't) everyone took the attitude of, "Well, at least it isn't worse.... just keep drinking lots of water." When I printed out all the articles I could find on POTS and brought them in, it was really helpful, and my cardiologist was actually glad that I did -- he knows he's not a neurologist, and he also knows he doesn't have time to spend doing special research for one patient. He was willing to have me try a few things based on the advice in these articles -- so it's been kind of a joint effort, with me finding information and suggesting things to try, and him sorting through the information and OKing my ideas or not. It's not as validating or comforting as a doctor who just says "I know exactly what's wrong with you and I know how to fix it!" But I don't think there are too many doctors out there who can do that for people with autonomic dysfunction.

I can also related to the family & friends thing. While my family really helped me push to get a diagnosis (they were really worried about my symptoms), now that it's "chronic" they have a harder time being sympathetic. If one day I can help around the house, I have energy, I can go out, etc and then the next day suddenly it's all I can do to get through work and I have to sleep the rest of the day, to them it looks like I just use my symptoms as an excuse to be lazy. And, although it hurts me to have them think this, I can kind of understand it -- it's a very "invisible" syndrome in a lot of ways.

If you can find a doctor in Toronto who is at least a good listener and takes you seriously, that might be your best bet if you can't find a specialist.

Good luck!

Jump

[ajw4790]

Welcome! Yes, getting to the point of finding help to deal with all of this was a long road and at times with very little support from others, because they knew nothing of what these diagnoses mean. It can take a while, but eventually many can finally find that "right" dr. to help them, that actually listens, knows what the are talking about, and tries different approaches to help relieve symptoms etc.

It is awful when your own family does not support you and I am sorry your sisters said those awful things to you, I guess that is what happens when people encounter things they do not know anything about or if it scares them in some way.

There are some people on here from Canada, who may have some pointers of drs etc. that maybe somewhat close to you?

If you PCP is not supportive or understanding or does not have any knowledge of dysautonomia, you may want to see it there is an internist relatively close that does have the knowledge to help you. Without having good supportive drs. this adventure can be even more rocky!

[Mary P]

Welcome! Yes, getting to the point of finding help to deal with all of this was a long road and at times with very little support from others, because they knew nothing of what these diagnoses mean. It can take a while, but eventually many can finally find that "right" dr. to help them, that actually listens, knows what the are talking about, and tries different approaches to help relieve symptoms etc.

It is awful when your own family does not support you and I am sorry your sisters said those awful things to you, I guess that is what happens when people encounter things they do not know anything about or if it scares them in some way.

There are some people on here from Canada, who may have some pointers of drs etc. that maybe somewhat close to you?

If you PCP is not supportive or understanding or does not have any knowledge of dysautonomia, you may want to see it there is an internist relatively close that does have the knowledge to help you. Without having good supportive drs. this adventure can be even more rocky!

Thanks for your response. I actually saw an internist when I was taken by ambulance to our hospital with a 'racing heartbeat'. That was April, 2007. He ordere a ton of heart tests and a kidney test but everything turned out okay. He said that my blood pressure was very low but let it go at that. I remember being so fatigued that I just wanted to go home and go to bed so I didn't ask anything about this abnormal blood oressure when he didn't suggest that anything else be done about it.

Have you had any luck withyour health problems by seeing an internist?

[Mary P]

When I read your posting, I almost cried. It brought back so many memories from when I was trying to find out what was wrong me. I wish I could slap your sisters for their attitudes! I relied a lot on my husband's support. He's a fishing guide and knows lots of doctors (they all seem to like to fish) and he was able to pull in a favor with someone who knew the head of the Neurology department. It was at Christmas and no one was going to be able to do the TTT for weeks. Fortunately I had the test on Jan 30th and was able to start medications the next day.

So, my advice to you is to do some research into locating a doctor in your area and then find someone who knows someone who can get you in for an appointment. Make a list of your symptoms and take it with you. I was also diagnosed with pure autonomic failure before it was narrowed down to POTS by the TTT.

I'll be thinking of you. Good luck.

Hi Deb, Thanks for your kind words. The stress of negative family attitudes are as hard on me as the condition itself. Now, a dear male friend who can't cope with what's happening to me has 'coped out' as well. This has been devastating as well.

I think that once I do find a doctor who will help me, I'll probably have a TTT. I've read about this test and am scared to death of it. How did you find it?

[Mary P]

I had to fight a ton of doctors! Luckily my family did believe me. As far as a dr in the Toronto area, I'm not sure, but I think somewhere on the site there's a list of doctors...maybe that could help you. Anybody want to help me out with the link here?

Meg

Hi Meg,

Thanks for your encouragement. There's no doctor on the list on this site who can help me. However, I did find a neurologists at 3 different hospitals in Toronto and will pass these names to my doctor and see what she does. I think that I'll phone first just to see what's what with taking on a new patient. I've done everything else myself so why jusy hand her a list of neurologists when she told me she didn't have any idea where to begin to look for one.

[ajw4790]

Hi!

I have had some luck with my internist (PCP), she was the one who first caught the Neurocardiogenic Syncope. Along with having a good internist to go to that understands at least somewhat what is going on and is willing to learn, another important thing is getting at least one good cardiologist (electrophysiologist) and autonomic (neuromuscular) neurologist to help with your care. For me I have had the most ongoing help from neurologists. I know for many of us the dr. that has helped us the most varies. The most important part is that they are familiar with patients that have these types of conditions. I personally have found large university based medical centers to be the best place to find doctors that are educated in these conditions. Especially if it is a well respected medical teaching and research hospital. Also, I before would have stuck with older drs (because of more experience) and female (because I thought males just would not understand and tell me to suck it up) and I have found the opposite true. Female doctors tend to give me a very hard time and just label me fibromyalgia. So, just a thought...

[ajw4790]

Hi again!

After reading a post that you posted while I was typing. I wanted to just bounce back in and say that yes, tilt table tests are not the most fun thing in the world, but they are not that bad. Yes, it is meant to trigger your everday symptoms to be recorded on the monitors, but all in all it should not be all that much different then your overall daily symptoms if you were to go from supine to standing and have to stand completely still. I do not think it is anything to be to worried about, but just make sure to follow all directions about meds etc. so that you don't have to do it again. Also, make sure you have a ride home. I actually drove myself there and walked out shortly after the test and drove home. Also, have water to hydrate after the test. That is what helped me.

[Mary P]

I've been looking for a doctor who is really interested in helping me since. So far it's been 9 failures and one doctor who is trying but he's a nephrologist and it's out of his sphere. I've thought recently of giving up and just taking the articles I've read on POTS and asking my regular doc to try medications.

My doctor has never liked when I suggested something I read or saw about what pertained to me. However, after reading your response, I''m taking some materials to my doctor tomorrow. She should be okay this time because she has my diagnosis fron the neurologist and she accepts that, like most doctors, she knows nothing about Disautonomia.