Shy-Drager

[taylortotmom]

Hi, need to connect with any women who have been diagnosed (formally or informally) with Shy-Drager or had the term dysautonomic-dyskinetic syndrome applied to them. Understand lots about dysautonomia (been diagnosed for two years with MVP with dysautonomia with NCS and tachy-brady). This is a new one (diagnosis) and more serious. Need some support from any woman out there in this situation.

I also receive hydration therapy via port-a-cath and need some support from others going through this same level of treatment. (On florinef and toprol- this is over and beyond all that- thanks!!)

Appreciate any support- I know how debilitating dysautonomia is for all of us.

Carmen

[DancingLight]

Carmen,

I don't know of anyone off-hand on this board who has shy-drager syndrome. But, maybe someone will see your post and know of a fellow member who does? I hope so. I hope you will find some people to correspond with. Have you also looked on NDRF and posted there? I don't know if you might find someone on that site?

Welcome here, and I hope you find some of the support that you are looking for...

Emily

[taylortotmom]

Thank you so much for responding. Yes, I have posted on NDRF and received a call from Dan. He was extremely pleasant but it seems I am a minority of a minority. Dysautonomia is such a mysterious and misunderstood disorder that finding anyone that has similiar problems at all is helpful. Maybe somewhere out there is another young mom going through the SDS stuff (potentially, SDS) but I pray that I am in fact a rare if not isolated case. Thank you again!

Carmen (I am 31!)

[DSM3KIDZ]

I don't know much about your dx but I just wanted to welcome you to the board. I hope you find all the information and support you need. There's alot of wonderful people here who help whenever they can.

Dayna

[ariella]

hi carmen

are they absolutely sure of your diagnosis? shy-drager usually affects older people. when I was concerned that that may be what I have (I'm 34 and have dysautonomia together with walking and coordination symptoms), I read that one of the criteria for ruling it out is onset of symptoms before age 30. Most of us here on the forum have been misdiagnosed at some point. Praying that should be the case in your situation as well.

Sending warmest wishes,

Ariella

[briarrose]

Are you sure of your diagnosis. Shy Drager is extremely hard to diagnose and we all fear it.

Johnny Cash was misdiagnosed with it at one time even.

I'm wondering how they came to the diagnosis of shy-drager and what they told you your prognosis was.

Beta blocker is good for the tachycardia and florinef is good for hypotension.

[MomtoGiuliana]

Hello Carmen and welcome, although I am sorry you are struggling with autonomic dysfunction.

I echo the previous comments regarding shy-drager. It would be extremely unusual for a woman in her 30's to have this. It is an unusual disorder to begin with, and generally affects much older patients and generally men. SO, I am also curious how you ended up with this diagnosis (which is far more serious than POTS/autonomic dysfunction). There is a lot of overlap in symptoms, but shy-drager is progressive. I hope this diagnosis is incorrect.

I have not heard the term "dysautonomic-dyskinetic". Maybe someone else has, or you can explain it further?

Take Care, Carmen. I hope you get answers to your questions.

Katherine

[Michelle Sawicki]

There is a shy-drager support group at: http://www.shy-drager.org/

I hope that helps!

Michelle

[Guest Julia59]

Carmen,

Most of us here on this site have POTS or NCS or both, there are some that also have PAF, but not a lot. We all have some form of dysautonomia or another, and I wanted to let you know we are here to support you no matter what.

I know that shy-drager has been misdiagnosed many times, and I hope this is the case for you. Did you see a specialist who is very familiar with all the different forms of dysautonomia?

Welcome to the group! I wish you the best help available to give you the best quality of life. Please feel free to e-mail me any time also.

I wish I could help you more, but I really don't know of anyone who was officially diagnosed with shy/drager.

Julie :0)

[Kite#7]

Hi All,

Thank You Michelle for providing that link again this FORUM is a wealth of info. I have yet to be "formally" diagnosed with MSA but , after my last visit to the Mayo , which was extended by 10 days and further to the plausible what ifs was going to be extened another 2weeks +. My wife and I left knowing the further testing really , at this time in our lives both spiritual ly & finacially were, not going to change anything. In other words - Protocol is the same , Meds are the same , stuff will change as it changes and maybe - now that I /WE have some idea ( as much as anybody) with research , hardwork and less doctors / tests /hospitals ; we can affect changes or atleast provide a consistent quality of life - relaxed , less stress. My feeling was that Dysautonomia is alarge umbrella that coverage is enough until the next Mayo visit. Luckily we are in contact with the Doctor there always /anytime immediately. So he is aware of my health condition up or down ( my lovely wife journals EVERYTHING ego be ****** ) MSA is extraordinarily hard to give a definitive dx and in some cases ends being a subjective rather then imperical dx. The protocol doesn't change. The stress does. The lifestyle may. Carmen , I found DINET early in my searching the internet . hovered for a long time until I decide to participate. Mainly because i went thru all sorts of possible dx's ,including Parkinsons, prior to pinning this down. I learned alot here !! I recommend journaling your days - all events/episodes - possible triggers etc. Anyway goodluck

kite 7

[Kite#7]

HELLO ALL,

SEE THAT' S ANOTHER OBVIOUS SYMPTOM - I FORGOT TO MENTION I'M NOT A WOMAN (hehehehe) !!! No impotence jokes please its a memory thing -

to quote John Candy &Steve Martin (Planes Trains &Automobiles) HEY!! HOW ' BOUT THEM BEARS !!

Kite 7

[taylortotmom]

Thank all of you so much for replying to my post! Is the SDS diagnosis definite? No and yes. I have "formally" been diagnosed with the dysautonomic-dyskinetic syndrome which is used interchangeably with SDS. I require approxiamtely ten hours of iv treatment of fluid a day to have any "normalcy" to my life. This is not a complaint because this actually has made a huge improvement in the quality of life I have. My husband and I have had to move in with my parents as we have two small children and I am no longer able to physically care for them full-time- alone (my husband works long hours). The SDS possibility comes from the fact that despite all the run in the mill usual dysautonomia treatments, I have progressed steadily over the past two years in the severity of symtpoms. Formally, I would have good days and bad days and might even have a month or two where I was pretty okay. No more. There are no longer good days and bad days but good hours and bad hours. Where dysautonomia usually doesn't follow any typical pattern my new level of disability has been pretty consistent. It is consistently getting worse despite treatment. I know that sounds so negative but that is my reality. I have an extremely strong faith and support system. I don't think God is through with me yet so I am not to the point of "giving up". An irony is that when I first got sick I went back to school to get my Master's degree in Counseling. I always had the idea I would be a private practitioner helping kids. God had other plans. I am unable to work at all and have never used the degree professionally. Yet, it is ironic how much I have had to rely on my own training to deal with my own life. Chronic illness and terminal illness require an inner strength I don't think anyone really understands unless they experience it personally. So, that is where I am in life right now- dealing with a peculiar illness that took a peculiar turn. Thank you all so much for all your posts!

Carmen- also known as Ms. Atypical

[Kite#7]

Carmen ,

Atypical is certainly the correct moniker by which to describe your situation. I would suggest that we have our own lexicon here and in actual fact everyone is atypical. I have 5 Kids and luckily we are now at the stage in their up bringing that the Older ones can participate in the care of the younger. I too have maintained ( I use this word strongly ) a level of disability over the last 2 years that have taken my life as I new it away . We have had to close a business , the vigourous physical activity , training Schedule is all but non exsistent. Except for some clients whom I have a mutual aid "Training" program with ( in other words its fun & they don't freak out if I have PROBLEMS ) . my body has taken an absolute beating. When I suggest that I have not Formally been dx encompasses my last visit to the Mayo. I walked in to see the Doc and after his hour or so exam. That was his protocol. He had seen me only 6 months prior an the deteiration was enormous. and evident to the naked eye. As he continued to try to rule Out MSA it was more evident. Our stay increased in length. Until finally , we could stay no longer. That's when the decsion was made to Understand what had been ruled out . At some point it may seem reasonable to go back do some more testing but to my Doc , Wife & I consensus was/is self evident - we developed a quorum - and the remaining testing is expensive in order to "formalise" hopefully the dx. Until then I work as hard as I ... CAN and enjoy life C'est la vie Joie la vie.

Slainte` Kite 7

Ps a Naturopath I go to does IV for terminaly ill people and has many US clients HE is very well respected. Won't do me though says I am not strong enough however , people fly in to see him from all over NaturoMed Dr Micheal Prytula. I think web site is just .com He is a good guy done alot with Heavy Metal & Chemical exposure. Is a believer that east & west should co -exist dx'd me before the Mayo.

[geneva]

Carmen, I wanted to also welcome you to the board. I don't have any information on Shy Drager to help you but hope that you will find what you are looking for from someone on board. You sound incredibly strong and I am so happy to hear you have both a strong foundation and faith as well as a supportive family. It can make such a difference.

[Sunfish]

Hi Carmen -

I hate to echo the "no, but" phrasology when I know you're longing for someone who totally gets your situation first-hand, but I still thought I'd post. I'd reiterate what a lot of others have said too re: diagnosis, etc....particularly b/c I just got back from several weeks inpatient at Vanderbilt & they told me of seeing multiple people who had been given your exact diagnosis that did not end up being the case. Of course that in and of itself doesn't change your current treatment, etc...but I just thought I'd add that anecdote. I don't have IV fluids at home but the discussion has been had & is going to be had again when I have my follow-up at Vanderbilt in August. And I do get the frustration - like many here - of being so atypical....for better or for worse I don't think you get to keep the name for yourself. I'll write about it more when I post on my Vanderbilt trip, but I was surprised there to be told that even in the atypical world of dysautonomic, I don't "fit" for them...atypical amongst the atypicals...don't you love it? They couldn't make up their minds for my diagnosis & it was left partially as a "wait & see" but regardless....I do hope you find people here or elsewhere to really connect with.

Hang in there,

:-)melissa

[taylortotmom]

Hello, everyone- thank you for your posts. SDS is an intriguing area isn't it?Geneva- thank you for your encouragement and Kite#7 please keep me abreast of your journey through this complicated maze we've been presented. Sunfish- okay now I have a soapbox to get on. If iv fluids are mentioned again you might want to strongly consider them. The port-a-cath I have is in my chest and I take 8 hours of fluid over night and one more bag during the day (this takes a couple of hours). This sounds horrific and I was very squemish at first. You will be amazed what a difference it can make in your life. I never knew how severely dehydrated I was until I started doing these fluids at home- whoa! They contain not only saline but large amounts of sodium and potassium which are crucial to the management of dysautonomia. I actually have had a few periods of feeling fantastic over the past week (albeit- shortlived- but hey, I'll take them!). Don't let the iv thing freak you out- it has been a blessing but it took about two months before I could really see a difference. Just keep this in mind. Good luck!

Carmen

[DawnA]

I am a little slow in posting. I wanted to let you know that my dysautonomia has progressed in teh past three years. I was intially worried about shydrager. I know of others who were misdiagnosed with it. I hope this is your case.

I am not on IV fluids, but have come close to it. Have they ruled out mitochondrial disease. I have many friends diagnosed with it who have dysautonomia,receive extra fluids and even on tpn. I have been diagnosed with a metabolic disorder, NOS. It is most likely a mitochondrial disease, but there is not enough evidence on my muscle biopsy to diagnose it yet.

Welcome to the board!

dawnA

[Sunfish]

Hi Carmen -

Regarding the IV fluids, for me the IV doesn't freak me out per se, and I KNOW that fluids overnight would definitely make me feel better, particularly in the morning, but as always things are more complicated than that:-) Swimming is the one type of activity I've been able to do at times & am trying to work toward that; having a cath makes that a no-no. I also have too much "output" overnight...in other words no matter when I drink what, when I cath in the morning I have over 1000cc in my bladder (after having cathed right before falling asleep at night). So...it wouldn't be safe bladder-wise for me to have more fluids overnight until we get that straightened out. I just started taking DDAVP at night & it seems to be helping...both with the output & with how I feel in the morning. So...bottom line is if I could hook myself up to an IV & there were no other factors I'd do it in a heartbeat, but for now we're doing some other things that at least seem to be heading in the right direction. Thanks though for the encouragement. Hope you're having some good days,

:-)melissa

[Dawg Tired]

Hi Carmen! Welcome to the board. I have tachy-brady and NCS and OI. No MVP. I couldn't tolerate Florineff or Proamitine. I, too was working toward a degree in psychology and had to drop out. Now I am having a "good" day if I can manage to take care of myself. This place is the best, the pinnacle, the nadir, the top of the line in support. I have had weeks when I couldn't talk to anyone else and these great people were here to provide support.