New Here, Multipe Symptoms. Are They Connected?

[shrparatch]

Hello,

I am new here and have been suffering for years. I have multiple diagnoses including Gastroparesis, Neurocardiogenic Syncope, & IBS with diahrrea and constipation. I was originally diagnosed with these in late 2008. Since that time I have had multiple tests, been on multiple medications, and just progressively gotten worse.

I have recently switched my care to the Cleveland Clinic. I have had several more blood tests and a QSART test (which I failed). I have a multitude of seemingly unrelated symptoms including lightheadedness, low BP, variable HR (50-120), vision disturbances, recurrent headaches, persistant nausea (sometimes vomiting) and abdominal pain, fecal incontinance, weakness, muscle pain in hips and lower legs, little to no appetite, fatigue, and I get full after just a few bites.

I have days when I can not tolerate being upright at all and have significant difficulty thinking. With the exception of a select few, my symptoms seem to come and go from day to day. I am very frustrated and confused. I am the sole support for my family at this time and having significant difficulty maintaining my full time job.

I am just wondering if this sounds like anything you all have went through? Do any of you still work? How do you cope?

[Katybug]

Hi shrparatch,

It does sound very much like some sort of dysautonomia. I am confident you can get good help from the docs at Cleveland Clinic for these issues (from what my friends here that go to CC tell me.)

I don't work anymore but I have several health issues beyond my POTS. Many people on here do still work and keep in mind that many do recover over time from dysautonomia and/or at least learn how to make it much more manageable. We periodically have members that come back just to tell us their success stories.

Welcome to our community. I think you will find some good support here.

Take care,

Katie

[SarahA33]

Hi shrparatch...

A big welcome to our forum, among some of your symptoms we have another thing in common as well, I'm also a patient at the Cleveland Clinic. My local doctors diagnosed me with POTS w/ a hyperadrenergic component but my case became much too complicated so they referred me to the Syncope and Dysautonomia Clinic. Are you seeing neurology or cardio there?

You are definitely not alone in this, I know it can feel like that sometimes. I think of this as an isolating condition, especially when I was bedbound for months at a time, and friends and family try their best to understand but they don't grasp the decline and symptoms usually. I'm here to tell you that there is light at the end of the tunnel, and I do still have my bad days, but before I went to the Cleveland Clinic I had soaring HR's that weren't controlled by any med's previously tried here locally and I was confined to my bed/couch 2 or 3 days out of the week. I was started on a medication called Ivabradine that Dr Jaeger suggested, and he also readjusted my beta blocker and sent me to an epilepsy specialist at the CC who correctly diagnosed my epilepsy and put me on the correct dosing of antiseizure medication and I have been seizure free since May, and this morning I rode my bike outside for 20 minutes. I haven't been able to do these things in 7 years.

Unfortunately, I am not able to work as of now and receive SSD. I was just too sick.

Things are still an on-going daily challenge, and new things pop up all the time, but it helps me to have friends who understand what Im going through. I also experience migraines, along with my HR those are my worst two symptoms. I get botox every 8 weeks for them and it helps some.

Again, welcome to the forum, and I'm glad that you've found us. It made a big difference for me a few years ago when I joined just knowing that others were out there and I wasn't alone. Hang in there!

All my best

Sarah

[Katybug]

http://forums.dinet.org/index.php?/topic/26706-what-tips-tricks-apps-programs-and-so-forth-help-you-manage-your-symptoms/

http://forums.dinet.org/index.php?/topic/22909-chores-and-pots/?hl=%2Bhow+%2Bto+%2Bcope

http://forums.dinet.org/index.php?/topic/25740-ideascoping-please/?hl=%2Bhow+%2Bto+%2Bcope

http://forums.dinet.org/index.php?/topic/26647-pots-flare-up-how-to-get-it-under-control/?hl=%2Bhow+%2Bto+%2Bcope#entry24

[shrparatch]

Sarah,

Thank you for your response. I am a nurse and have been for 17 years. I frequently have had to be taken out of work in a wheelchair. It is embarrasing.

As for my diagnosis, I was not diagnosed at CC. I originally went there for my GP (gastroparesis) because my Dr's at the U of M were not doing anything for me and said that it was somatoform, basically all in my head.

I am scheduled to see Dr Sweiss, inthe pain clinic, Dr Shields at the neuro clinic and a couple of other GI Dr's. However I dont see them until Sept and October.

I too have trouble getting out of bed a couple days a week. However I run such a low BP that they can not put me on beta blockers. Just recently I have begun having increasingly variable HR's, anywhere between 50-120. And the palpitations and chest pain when my HR is fast are very unsettling.

I feel very isolated, I really do not have alot of close friends and many of them have stopped talking to me. The majority of my family does not understand either.

Sharon

[SarahA33]

Hi Sharon,

I apologize for the delay in responding!

I have a close friend from the forum who sees Dr. Shields, I know she likes him a great deal and has successful visits with him! Others on the forum have also had positive things to say about him. There is an option to search (box up top) where you can enter his name in if you'd like, maybe you can come up with some results that way!

I'm sorry that you have had to experience feeling so poorly at work.

I hope that you are able to find some answers and move forward soon. There are a lot of people who do understand, even though the those closest to you may not be able to right now.

Wishing you well! Sarah

[Raisin]

Hey Sharon. I am also a patient at the Cleveland Clinic. I was pretty much bed bound for quite some time. I am on disability but that was for something else besides the Dysautonomia. I can tell you that Dr. Jaeger and Dr. Shields have given me my life back. I still struggle as I have dizziness and I use a cane but I believe that is something that not all Dysautonomia patients struggle with. I can sooooo relate to. The GI issues as well as the the chronic nausea. It is a battle. Try to eat what you can and if you can get it on down, try some type of supplement for calories.

Dr. Shields is difficult to get into for an appt. but take heart that he is so smart and I pray that he can help you. Because you and I share many symptoms, I have faith that you are heading in the right direction. Hang in there girl! Help is on the way.

[Debbie Rose]

Hi Raisin,

Wow it sounded as if you were describing me. I was recently been diagnosed with Vasodepressant vagal syncope with is the same as Neurocardiogenic syncope. I too have dizziness, fatigue, rapid heart rate, shortness of breath, nausea, low BP, weakness of my extremities with numbness of the lower legs, frequent headaches, and alot of lower GI problems including diarrhea and fecal incontinence which has started in just the past month. The fecal incontinence was a surprise and has now had me wearing adult diapers which is very depressing. I have a GI appt in Feb which I hope will get a diagnosis and treatment for this.. I look forward to hearing how you are doing

Debbie