New Here...not Sure What To Do Now With This Illness(sorry So Long)

[cynog]

Hi all! I'm new to this board and looking for some help. For approx 18 mos been having bizarre symptoms. The one that brought me to the doctors was my high heart rate and swelling in the hands and feet (especially with exercise and heat). I have had all kinds of tests. My doc thought it was a pheo, sent me to endo and she ruled it out. A few months later I saw the show on TLC (Mystery Diagnosis?) and thought the lady sounded just like me except I dont completely pass out. Started researching Dysautonomia and found this site. I was floored! I have every symptom! So I printed it out and showed it to my doc. He read it , kinda shrugged and said something like, "you dont want to have this, its incurable and hard to treat. I dont think u have it." Thats it...no tests nothing! Since then I have had tons of blood work, 2 holter monitors (inappropriate sinus tach), an echo (normal), sleep study(no apnea but found I dont oxygenate my blood when sleeping O2 levels in the 70s), (PFT"S for shortness of breath, Normal) seen 2 cardiologists who were just insulting, and tried to put me back on beta blockers, which I do not tolerate, bad side effects (nobody believes this cause "it's what we always use for sinus tach and high bp"). A few months ago I started having severe fatigue and joint aches so I begged my doc to send me to rheum. He diagnosed me with hypermobility joint syndrome. Having no clue (neither did the doc apparently) that there was a connection to this disorder, I was furious and discouraged. Then my mom called to tell me she thought she knew what was wrong with me...she had seen the show and thought it sounded just like me! So I turned my attention back to this site. That was when I saw the connection to the hypermobility syndrome...once again I was floored. I know I have this disorder! Thank the Lord I'm not just crazy, or lazy, or all the things people have accused me off all this time. I know that all these different symptoms that seem so random are tied together! I have been validated in my own mind even though I cant say I have it cause I have n ot been diagnosed.

Now I dont know what to do because I live in a very small town in southern Idaho and no doctors here know what it is!

There is no doctor close! I'm trying soooo hard not to get depressed but I cant work(I'm an R.N.) and we are on the verge of bankruptcy due to this and all my medical bills. Your stories and posts are pretty much identical to the symptoms I experiance and I cried when I read them cause it was like reading about my life.

If anyone can HELP me I would be so grateful...Im so sad, discouarged and just feel so awful all the time..Feel so alone...nobody understands, or even tries too...

[MamaTrain]

Dear Dazed,

Your story is all too familiar to most of us! Its VERY frustrating to KNOW something is wrong with you but have everyone look at you like you are nuts! And you are a nurse for crying out loud! I am in a similiar boat as you. No doctor that know a darn thing about it is close to me. The best thing I have gotten is a heart rate variability test from a very well know nutritionist fellow in my town. It measures how your ANS is working. It was the first test that showed something was indeed wrong. A few folks on here have told me that a person with dysautonomia needs to determine what is causing it. Recently, a friend whose daughter is going thru this also found a regular doctor who would just listen and when they were all done talking she said the first thing they would do is test adrenal function. I started researching it and was floored at how much havoc it can cause even if they are just not workin to their best ability! Most docs wont even look at it unless you have one of the more serious conditions with adrenals! I'm seeing a naturpathic doc and we are going to discuss this at my appointment tomorrow. Keep fighting, keep researching, keep a good attitude cause this can really suck the life out of you if you let it get the best of you. I have been ill for about 14 months and it really hasnt gotten so much better with time but it's still not "normal". They say here on the site that you will find your "new normal" and move on from there. Message anytime if you want and keep reading the boards....they are a wealth of information and so many of these wonderful people have truly saved the day for me many times! Blessings to you!

KC

[futurehope]

I was a patient that tested okay when given the cosyntropin stimulation test for adrenals, but "sub par" for an insulin tolerance test. Based on the subpar performance of my adrenals to forced low blood sugar, I was given a bit of adrenal hormone to take. I took it for about 3 months and gained weight and did not feel any better, as much as I wanted this to help me.

I think it's easy to hope for that magic thing that will take the bite out of POTS, but, realistically, I feel that improvement for me comes from several small and varied things that I've done after reading this forum for years.

There are exceptions to what I said, because in some cases, there can be a primary cause for the POTS. This is something I am always staying "tuned in" to for myself. But, for my daily adjustments to this condition, as I said, there are varied and many small things that taken together improve me, even though my primary cause has proven elusive.

Welcome, Dazed&confused. The first thing to expect with this new found knowledge is the unexpected. Symptoms can fluctuate throughout one day and over different days. As time goes on, you will become more knowledgeable about the idiosyncrasies of your condition. I suggest that you begin (after obvious abnormalities have been ruled out as cause), by realizing that this condition is relatively unknown with many possibilities for things that may improve you.

Have you given yourself the "poor man's" tilt table test by measuring your blood pressure and heartrate supine, and then after 5 minutes of standing still? You'll need a blood pressure cuff to do this. In your profession, that should be easy to get a hold of. Then you can search for a neurologist or a cardiologist that understands this condition. Once you arrange an office visit, you can show the doctor your "stats", both sitting and standing, so they can see the abnormal response you have to being vertical. Doctors like when they can see some proof of an abnormality that is measurable.

Let us know what you decide to do.

[erikainorlando]

Did you have a virus before you started experiencing all these symptoms? I don't have eds...I had a virus before getting POTS...some autoimmune dysfunction and many of us have an onset after an illness.

[cynog]

Thanks for your feedback...the challenge I guess will be finding a doctor...thats where im at a loss. I had several episodes of very bad strep throat and then a tonsillectomy. Not sure if this could have aggravated things. I have been reading about EDS and am starting to think that maybe this is a possibility. I have many of the manifestations of this disorder. Does anyone know who specializes in this? I have done the poor mans tilt table test. I actually stood without moving for close to 2o min. In that time my bp went up from 130/85 to 145/105, heart rate went from 9o to 120-130, feet numb and shooting pains, pins and needles, and turned purple blotchy. My hands swelled with red burning palms. I felt awful. If anyone has any advice on how to find a doc or knows a good one sort of out my way (willing to travel a little) here in Idaho, please send it this way. I'm stuck and dont know how to proceed. I dont want to go back to my doc since he dismissed this before and then the last appt I had with him he said to me (and I quote) "There is something definately wrong with you but I am too stupid to figure it out." He offered no suggestions, except here try this different beta blocker. I CANT TAKE THESE! It doesnt even help my HR so i dont know why they keep shoving them down my throat except that they have no idea what else to do.

THanks for ANY advice!

Cyndi

[Brye]

I feel so bad for you!!! I was blessed with a quick diagnosis of POTS but have had a terrible time controlling the symptoms. I've seen so many cardiologists here in Arkansas and none of them really wanted to try to treat it. I think they either didn't have the time or were too unfamiliar with it. I used to be an RN as well. I'm no longer able to work. My medical bills have been huge the past couple years as well and I've seen numerous doctors who have tried and failed to treat my POTS. I'm now driving 3.5 hours to Little Rock to see a different cardiologist and still no miracle treatment for me.

Have you considered applying for disability? Every little bit helps. I spoke with a lawyer before applying and he gave me a few tips and since I had seen so many doctors there were a lot of records of failed treatments. My disability was approved on the 1st try. You never know but it's probably worth a try until you're able to get your symptoms under control. I know it's not always approved as easily but it can't hurt to try. You really don't need to hire a lawyer unless you're denied and need to appeal.

I don't know much about doctors in Idaho but I wish you the best in finding one. There is a list here on this site of doctors who treat autonomic disorders. Maye there's one in Idaho!

Brye

[Chaos]

So sorry to hear that you are having so many issues on so many different levels. I'm still in the process of trying to get an "official" diagnosis too so I can totally relate to your post. Have come home and cried after many appointments with doctors who wanted to just blow me off as being crazy or a malingerer or whatever. Luckily I have a couple doctors who will listen and keep trying to find out what is causing my symptoms. I've started bringing piles of info to all my appointments and have a couple docs who agree that this is the likely diagnosis but won't make it "official" as they don't know enough about it to say for sure. It's kind of pathetic but I find I'm just always grateful for any doctor who will say "There's definitely something wrong with you, we just don't know enough to know what it is." While I'd love to have answers and solutions, at this point I'm just happy when they at least acknowledge that they don't know the answer rather than trying to make it look like I'm a mental case. Yeesh!

I was also working in the medical field before I got sick. I'm thinking about trying to start back to work on a truly PRN basis where I can hopefully decide on a day by day basis if I'm up to working. I can also relate to your financial concerns as it's been quite a strain to have the double whammy of not working and lots of medical bills.

Is there any chance for you to talk to any physicians or nurses you've worked with previously who might have any ideas of people in your area that might work with this diagnosis? Seems like many people on this site are followed by either a cardiologist or a neurologist for the dysautonomia/POTS and either a rheumatologist or a geneticist for the hypermobility.

Wish I could be more helpful, but all I can do is send you a hug and tell you you're not alone! You have lots of company in your misery here.

[cynog]

I was told by my doctor that without a official diagnosis of any certain thing I am n ot eligible for disability. Is that true? Or did he just not want to help me?

[cynog]

I was told by my doctor that without a official diagnosis of any certain thing I am n ot eligible for disability. Is that true? Or did he just not want to help me?

[LauraAsh21]

I believe that you do have this condition. I also have joint hypermobility and dysautonomia and POTS are a secondary condition because of the first. I also went through various doctors in order to get diagnosed. I started having symptoms at the age of 12, I am 23 and just now got diagnosed. The thing that convinces me is the joint hypermobility and the IST. I was also misdiagnosed with IST and there is a definite way to find out whether or not you have POTS/Dysautonomia, rather than just IST....

Ask your doctor for a tilt table test.... tell them you want this test to determine if you have POTS or IST and it is the only way to know the difference. Research it... if you have a positive tilt test, you pretty much have dysautonomia. Print something out to show your doctor, and tell him you will not give up until its done.

If I have learned anything with this condition... you cannot settle. Most doctors have no idea what it is, so print stuff out and take it to your doctor. Tell your doctor that you have to know what is wrong and you are asking for their help.

I wish I would have been more aggressive with my doctors, maybe it wouldn't have taken me 11 1/2 years to get a diagnosis.

Good luck. Let me know!!!

I'll keep you in my thoughts!

Laura

[lauralulu]

I could pretty much echo what Laura said too- you really do have to push with this. I've been having various problems since I was 19 (27 now) and until I found out about POTS I was just going from pillar to post with one thing then another. Had so many blood tests too and felt like my local Dr was beginning to think I was just a hypochondriac, which was awful. All I was doing was fighting to try and find out what was wrong. The tests weren't showing anything but I KNEW something was, and then I found POTS.

I'm not diagnosed yet- I saw a local cardiologist who diagnosed me with IST but I want to have a tilt table test to make sure that's right as it could well be wrong, so I've been back to my GP for a referral to a specialist who actually works with POTS.

I think that's the best thing to do, even if it means having to travel out of area, because this condition is so little understood and so we NEED to be seen by someone who knows how to recognise it! The DINET website has a list of physicians, I checked this out before deciding upon someone to see- perhaps you could do that too and make enquiries towards seeing someone 'in the know' because the worst thing is seeing people who are clueless. My cardio's attitude with me was rubbish, when I asked if it could be POTS or if I could be tested for that, he said 'well it could be and there are some tests we could do but there's no point really because you can't do much for that condition anyway.' !!!

It makes you feel so helpless and alone and no one should have to feel that way! So I'd look for someone who will understand the condition and be able to diagnose you one way or the other- the worst thing would be if you DO have it but see the wrong person and so miss the diagnosis and end up just having to put up with it!!!

[potsgirl]

Welcome to the boards! You are among some very good people here, who are knowledgeable and can relate to many things you're going through.

Yes, you do need an official diagnosis to get disability, and it has to be documented with doctor's notes and test results. Do not give up on this, because it can help save your home, your health, and your marriage. I get disability from the state I live in (AZ) because I worked for the state when I became ill. I also applied for federal disability as soon as I thought this might be a long-term (at least a year), debilitating illness. As soon as you get a diagnosis, apply immediately for federal aid, because they usually will turn you down twice, and you have to appeal. When I went to court, I had a lawyer, and got the disability.

Now, for getting the diagnosis....is there any possible way you can get in to see a specialist? A lot of us have had to do this to get a correct diagnosis and treatment regimen. Mayo Clinic at Rochester, MN has a specialty group for POTS (they're neurologists - Dr. Grubb is good). Cleveland Clinic is excellent, as is Vanderbilt. Also, look at our homepage to see good doctors that may be near you. It's worth the trip and expense because in the long run you have a much better chance of receiving disability and getting on Medicare. It's saved our home and allowed us to get the medical help I need. It also gives you the appropriate treatment plan for you to feel your best. I've been out of work for 2 1/2 years now, and while I would much rather work, the disability is a Godsend.

Let us know how it's going!

Cheers,

Jana