Where do I go from here?

[friday]

Hi. I haven't been officially diagnosed with POTS, although I have a strong suspicion that that may be causing some of my problems. I?ve been offline for a while so since I last posted I have seen a neurologist and a CFS specialist in NJ Dr.Podell. The neurologist gave me an MRI (which was normal) and didn't seem to want to deal with anything else. He told me since I was taking a beta-blocker that should deal with the POTS,like that was a cure. And he told me to see a cardiologist for a TTT. Seemed like he was passing the buck, on that one. Don't neurologist also give TTT? Anyway, one of the first things Dr.Podell mentioned was POTS. He didn?t' say I definitely have it I think he wanted to rule out other things first. He took some blood tests, CBC, thyroid, iron, etc. which came out normal. I haven't made a new appointment with him yet because he had also wanted me to get an ATCH test, which I still have to get, and a blood volume test (I don?t know the specific name for that). The hospital that was supposed to do that however now says they no longer do that test. So Podell is going to call them and see about it. In the meantime I'm waiting. I asked about a TTT but he said it was a really horrible test to have to go through and since he had my records (I take my blood pressure and heart rate several times daily and write it down) he could see that I have a problem with low blood pressure and high heart rate. He said it already told him what a TTT would so why put myself through it. Okay so now I?m waiting, seems like I?m always waiting. I have had a lot of trouble with breathing lately and it is really horrible. It?s hard to relax when you can't breathe. What I am wondering is do I have a nurological problem? I think so but I'm not being treated as such. I mean the neurologist is supposed to take care of that isn't he? I have had what seems to be apnea in which I wake up gasping for air, or it happens as I fall asleep. I read about central apnea and that is neurological. I don?t seem to get it all the time. I even had a sleep test done last year, nd it didn?t happen then.( although I only got three hours sleep) It?s not that I?m really worried about the apnea , it just seems to be another thing that points to something nuerological. I've also had numbness and weakness in my limbs so bad i felt I couldn't walk. I also have restless leg syndrome. I?ve read that also is due to the nervous system. I have an appointment with the neurologist again and I really don?t know what to say. I just want someone to help me and they act like it?s nothing don?t worry about it. I read a lot about things, and it seems to really sound like me, but then I go to a doctor and I get no help. It doesn?t help that I have such brain fog I get confused and have a hard time explaining things to the doctor. I have to go back to the neurologist and I just know he?s going to say the MRI is okay so I?m fine. Or he?ll say it?s anxiety related. The only thing making me anxious is being sick and having to deal with doctors. Any suggestions?

Sue

[calypso]

Sue,

Sorry to hear you aren't getting better. I think your neurologist doesn't feel comfortable treating you because he obviously knows nothing about POTS. So I would either continue to see the CFS doctor or seek an experienced cardiologist, endocrinologist or good general practitioner who understands the disorder well. My opinion is that it doesn't matter what the doc's area of specialty is as much as how well he/she understands the autonomic nervous system and has experience in treating other POTS patients.

I also have trouble breathing and it remains my worst symptom. It is nonstop and only gets better a little when I lie flat. Don't know what causes it, and the only thing that seems to help is avoiding large meals and doing yoga.

I also have constant weakness and fatigue. I more or less don't have much advice; you could try compression hose (do a search on this site; it's come up in prior topics), more fluids/salt (if BP is low) and gradual exercise increase (strength training with light weights and regular walking). Exercise helps me a great deal, as does plenty of fresh air and a very healthy diet (low sugar, low fat, plenty of fruits/veggies).

Best to you for better days.

Amy

[blackwolf]

Dear Sue,

Boy, I hate to say it, but "been there, done that, doing it now". I would have one thing to say, if your neuro doesn't want the TTT because your records are good enough, take it as a good thing. TTT's can be horrible and very uncomfortable. I've had 2 and I thought I was going to die each time. As to neuro's doing the TTT, it depends, there is a group of neurocardioligists that do the test, but, sometimes it might just be a nurse or tech doing it. try to find a doc that works with dysautonomia, just because they are a neuro doesn't mean they know what they are doing. That goes for any doc. I got some of my best info from my ob/gyn.

I can also relate on the sob(shortness of breath). I've had it bad for a while now. I can't lay down however, I do like my fan on, all the time, too. And I agree with Calypso, smaller meals did help with some of the sob.

As to the anxiosness and dealing with doctors, try to remember your the one in charge. If you don't take charge, sometimes noone will. And yes, I know how it is being sick and tired of being sick and tired.

I hope you find the help you need and deserve,

Blackwolf

[friday]

Thanks for the advice guys. It helps. I went to see that nuero today. He did as I said : the MRI was clear so you're fine. I then questioned him about why I couldn't breathe and the apnea. I also asked him what about POTS. Thought I would give it one last try. He says yeah but now you're jumping from one thing to another from MS, to apnea to POTS. I told him, I'm not jumping around. I didn't think it was MS, and had told you I though it could be POTS from the beginning. I also told him the main reason I was pointing out the apnea was because it can be neurological, and to me it's just one more thing to point to a neurological problem. I told him I have been charting my blood pressure and heart rate, and how it related to POTS. For this I got laughed at. For that I got angry. I asked him what was so funny about an intelligent person trying to find out why they've been suffering for over a year when doctors haven?t. I told him I was capable of taking my blood pressure and heart rate and charting it. And what it says points to POTS. He started listening after that. Nice surprise. He said we should get some documentation on that by doing a TTT. He recommended a cardiologist to do it. I appreciate my other doctor not wanting to put met through that, but I think it might be worth doing so that they have something official to look at in the future, and I don't face another laughing or even smirking doctor in the future. I just can't stand that. He also said I could go to the Mayo clinic and have all these specialist look at me under one roof. I asked him how much that would cost. He kind of laughed and said I don't know, so I think he sees the point I was asking which was I have no money. Anyway, I figured I?d try to get to appointment with the cardiologist. And in the meantime I'll have to make an appointment with the CFS specialist again and see what he?s planning on doing.

I have heard a lot of people complaining about having trouble breathing. This bother?s me that so many POTS people get this but no one seems to have an answer from anyone on how to get rid of it. I mean not being able to breathe is a pretty horrible symptom. It shouldn?t just be ?put up? with. You would think some doctors would realize that. There should be something to help us with that. I think my breathing either comes from laying down, or gets worse when I lay down. Most times it seems that way. Sitting with my head propped up sometimes helps.

Just wanted to update my message and thank you for your help.

Sue

[Ernie]

Hi Sue,

Thanks for updating us on your progress with your doctor. I am proud of you for standing up and getting your specialist to realise that you do have a problem and you need further testing. I know how challenging this can be!

Good luck with getting your diagnosis.

Ernie

[ethansmom]

Sue,

Sorry to hear that the docs are being frustrating..,unfortunately, it's all too common. I hope that you can find out everything you need soon, and get on the road to feeling as best you can. Take care and post whenever you need us

[funnyfrog]

Hi Sue - I just wanted to send you a quick reply that may help ypu. I saw that you also are from the NJ area like I am. I suffered for over a year from 1/2001-5/2002 until I was diagnosed. An elctrophysiologist/cardiologist at Monmouth Cardiology Group of East Brunswick NJ did the tilt table test and together with an endocrinologist, they diagnosed me finally at Rob Wood Johnson Med Center. I'll spare you all the long details of my story, feeding tubes, gi problems,etc,etc,etc, but if you need more info from me let me know. I hope you get help soon so your symtoms can atleast get to a controllable state so you can function a little better. Also, breathing is a problem for me, but I use a ventolin inhaler, only as needed when my breathing gets very bad and that helps me with it. Also, if you do not over exceed your limits, breathing is better. As soon as I feel my breathing getting labored and I start getting even just a little dizzy or tingly or ears ringing or any symptom happens, I sit down wherever I am for a little while until the feeling passes and that seems to work for me.

Have a good night

funnyfrog in NJ

[friday]

Hi Sue - I just wanted to send you a quick reply that may help ypu. I saw that you also are from the NJ area like I am. I suffered for over a year from 1/2001-5/2002 until I was diagnosed.  An elctrophysiologist/cardiologist at Monmouth Cardiology Group of East Brunswick NJ did the tilt table test and together with an endocrinologist, they diagnosed me finally at Rob Wood Johnson Med Center. I'll spare you all the long details of my story, feeding tubes, gi problems,etc,etc,etc, but if you need more info from me let me know. I hope you get help soon so your symtoms can atleast get to a controllable state so you can function a little better. Also, breathing is a problem for me, but I use a ventolin inhaler, only as needed when my breathing gets very bad and that helps me with it. Also, if you do not over exceed your limits, breathing is better. As soon as I feel my breathing getting labored and I start getting even just a little dizzy or tingly or ears ringing or any symptom happens, I sit down wherever I am for a little while until the feeling passes and that seems to work for me.

Have a good night

funnyfrog in NJ

Funny frog,

Thanks for the help. I'd like to email you and find out about the place you went to in east bruswick and your experiences. I'm so dizzy right now I can't . I'll try tomorrow thanks for the help.

Friday.

[funnyfrog]

Friday - Hope you feel better soon. Email me whenever you are doing better. Haang in there - there are better days ahead!!!! Funnyfrog

[funnyfrog]

Sue - Just wanted you to know I am thinking of you today and said a prayer for you - Hope you are doing a little better than last week. If you are well enough to see this, smile. Things aren't that bad - There are people feeling worse than us - I volunteer once a week on an oncology floor at a local hospital and even though it takes all my strength and sometimes I probably have worse vital signs than the patients, our disease is not terminal and in my case, has taught me to be more compassionate and help those in need, even if I cannot do much, just smiling and saying a quick hello and sitting and holding a persons hand can do wonders for their spirit,as well as for mine. POTS is life changing, in ways it makes your life worse, but in more profound ways, it has made my life better - It has taken me 2 years to reach that conclusion,. I hope your journey with this will be shorter than mine has been. Take care -Be well. Funnyfrog in NJ.