MVPS/Disautonomia

My cardiologist just diagnosed me with Mitral Valve Prolapse Syndrome with dysautonomia (well at least I finally have a diagnosis).  This has been majorly kicking my butt for the last 3-4 months (though I've had milder symptoms for the last 30 years).

Things have been so bad that I was on medical leave for a month, and can just barely make it through a 4 hour day. I have severe fatigue, palpitations and shortness of breath that keeps me up half the night, memory and other cognitive problems, etc...

Right now, and for the last couple of months, I've been unable to work (and, I've been fortunate enough to work from home these last 2 years)... and, of course, this morning I was laid off from work.

Has anyone been able to successfully file for Social Security Disability for disautonomia??

Also, what kind of doctor do you think is best to treat this?? My cardiologist? or should I be seeking the help of a neurologist?

Thanks.

Mar

[acesew]

There are several here that should be able to give you advice on disability.  I believe Heiferly and Halbashes receive it now.  I am in the process of applying for it, but I have just recently turned in my notice at work.  So I am waiting until I have quit completely.  Although, I haven't been to work at all this week.  I am going to try it tomorrow.

On the drs to treat it.  I don't know yet.  I have heard about both cardiologist and neurologist treating this.  I am in a position that I may be having a cardiologist treat mine with the guidance of physicians from Vanderbilt.

[AireScottie]

Welcome!  Yes, some people are on disability because of this.  I am still waiting for it myself.  We're supposed to have a disability thread starting soon, so that may be helpful to you.

I started out with an Electrophysiologist, which is the most likely doctor to deal with this.  I now also have a Neurologist, because it turns out my problems are from neuropathy.

I see from an old post that you are hypothyroid.  Messed up thyroid function can really contribute to dysautonomia!  Do you know if it's an autoimmune thyroid problem?

[MarisaV]

Thanks for the replies, AireScottie and acesew.

I am hypothyroid, but its not due to an autoimmune issue. I just have low thyroid hormone, and low to normal TSH (which is paradoxical...TSH should be high).

Shortness of breath these last 6 weeks, has been ridiculous. I can't lay down and breath comfortably, and have been sleeping sitting up... even so, its still difficult to breath and its been keeping me up most of the night.

Mar

[acesew]

I understand that.  I have had to start sleeping sitting up.  I just can't seem to get comfortable.  So I understand.

[Heiferly]

A cardiologist or neurologist can treat you; many people seem to be happiest with an EP cardiologist (electrophysiologist).  The percentage of neurologists that are specifically  knowledgeable about autonomic neurology and have a good bedside manner seems to be lower than the percentage of cardiologists that are knowledgeable about the more common forms of dysautonomia and have a good bedside manner; this is just my own anecdotal observation of patient choice of physicians, your mileage may vary.  As AireScottie pointed out, some of us (myself included) see both types of specialists, which works well depending on what your specific needs are and what your doctors' preferences are.  I personally like to have as much input as possible on my "team," because each doctor has his/her own perspective to add to the mix according to specialty.  

Yes, I am on Social Security Disability.  I got it immediately after I fell ill with dysautonomia, however, I was not diagnosed as such yet at that point in time.  I actually didn't have much of a diagnosis at all at that point, so I believe my doctors based most of the application off my symptoms rather than a diagnosis.  Either way, it's six of one, half dozen of the other, because dysautonomia isn't on "the list" of diagnoses for SSD.  So your doctors have to make a case that your disability is equivalent to one or more of the diseases that is on the list.  At least, that's how I understand it ... I'm not an expert on these things, so don't quote me on that, and please someone correct me if I'm wrong.  

Okay, I see I need to get that SSD thread going.  Project for the weekend.  Sorry it's taken me so long guys.  Thanks for your patience!

[MarisaV]

Thanks for your input. I'm sorry you're having the same breathing issues. I've noticed that if I dangle a leg off the side of the bed, there is some improvement. My Cardiologist claims that my breathing issue is due to blood backing up into the lungs (because the heart is not fully filling). He's giving me a beta-blocker( mostly to slow down the growth rate of an aneurysm I have, but he said it would improve the efficiency of the heart, and help with my dysautonomia symptoms too), but it seems to be making things a bit worse.

Were you given any reason for your breathing difficulties?

I've also noticed that coughing or contracting my abdominal muscles temporarily gives me relief. I wonder if a compression garment of some kind might help on the abdomen. Has anyone, who's having breathing problems, tried this? Of course, since it'd create a constant pressure, it might make breathing worse.

Mar

[MarisaV]

Thank you.

Do you remember what conditions your Doctors used, to equate your dysautonomia with?

Mar

[acesew]

I have asthma along with all of these other problems, so alot of mine could be related to that.  If there is even a slight pressure on my chest, I start having breathing problems.  I can't even go swimming for more than 5 minutes bc of this.  
I have noticed from alot of the feeds in this forum that many people are on bb and it has helped them.  The drs had me on midodrine at one time and I could not tell any change for me.  Hopefully this will give you some relief.  I have realized that I am alot different from many others.  I seem to have reactions to drugs that very few people ever have anything happen with.  My drs have finally realized that they have to be very careful in giving me something new bc of how I have reacted to many of the past drugs I've been on.  
When do you start the bb?  Which one did they give you?

Good luck

[Heiferly]

Ordinarily, the paperwork that the doctors submit goes directly to Social Security without passing through the patient's hands, so I never saw a shred of it.  I just know that this is the requirement that must be met.  The only part of my paperwork I saw was what I had to submit myself; my doctors didn't discuss their end of it with me at all.  Because I didn't have to appeal, there wasn't much hoopla with it.  

I do know that I had additional symptoms that would not be typical of dysautonomia because I was suffering generalized paralysis attacks and fatigue beyond what is typical of dysauto as well.  Ultimately, my diagnoses came to encompass both dysautonomia and narcolepsy with cataplexy; the paralysis attacks (cataplexy) may have helped my case.  

Dr. Blair Grubb (et. al.) has developed a rating system for evaluating the severity of cases of POTS that is parallel to the one used for congestive heart failure, I believe.  I would think something like that would be the most helpful, and probably the same type of case could be made for mitral valve prolapse dysauto, using a scale like that.  You can find that scale in this article:  (first URL for view as html, text will be tiny; second URL downloads pdf)

http://74.125.155.132/scholar?q=cache:UsdkQe2OXTwJ:scholar.google.com/+concise+guide+to+diagnosis+and+management+grubb+kanjwal+2006&hl=en

http://www.iranep.org/Articles/POTS%20%20JCE%202006.pdf

[MarisaV]

I have sensitivity to medications too. Most are all side-effect, and little benefit. I don't have asthma, but I can't stand any pressure on my chest. I can't stand to be in a pool. or to lay on my tummy.

They're trying me out on good 'ole fashioned propranolol (Inderal). My doctor claims it causes less fatigue... we'll see. As far as I know, all beta-blockers can adversely affect asthma... so be careful when starting.

Mar

[acesew]

I have learned to be careful with everything......I hope this works for you.  I am going to a ep cardiologist on the 9th and I hope he can help me until I get to Vandy.  My other doctors seem to cause me more trouble than helping me.  Let me know how it works out.

Ace

[acesew]

I have been trying to read up on MVP syndrome and am kind of confused on it.  The reason I am bringing this up is I got my records from my cardiologist and it said something to the effect of "mitral valve prolapse mild".  This doesn't sound good to me.  There are actually a couple of things in that file that have me questioning.
What exactly happens with MVP Syndrome?  Is there a link I can look up more on?

Thanks

[MarisaV]

Most of the time a prolapsed mitral valve is totally benign and causes no symptoms. Mine has even gone away (but my cardiologist says it doesn't matter... still diagnosed me with the Syndrome that some people with Mitral Valve Prolapse have).

Typical symptoms are palpitations, shortness of breath, fatigue, chest pains, depression. and migraine headaches. Dysautonomia is commonly associated with the Syndrome.

I wouldn't worry about it. Its just another reason why you have Dysautonomia.

Some links:

http://www.mitralvalveprolapse.com/symptoms.html

http://www.mvpsupport.com/

Mar

[MarisaV]

MVP(Mitral Valve Prolapse) can cause shortness of breath when blood flow back through the valve (regurgitation). My cardiologist said my shortness of breath was likely due to my heart pumping inefficiently and allowing the blood to back up into my lungs.

One thing I notice happen (and this is supposed to be the dyautonomia, is that my heart responds to a work load either very quickly and by too much, or, it responds after the work load... so I can walk up a flight of stairs at a normal rate... and the a few seconds later it hits me... major light headed, and I start gasping for air like a fish out of water (I'm surprised I haven't fallen down the stairs)... then eventually I catch up and every thing is normal.

Sometimes even moving my arms provokes a reaction.

I also get this little "blinks" in conciousness... and losses of time (or my sense of time)... very bizarre...

Mar

[MarisaV]

Ooops... forgot to add fatigue to the symptoms of MVPS

Mar

[acesew]

I have a lot of those same problems.  Actually alot of times, just turning over in bed will make my hr speed up.  I live on a farm and there is a lot of physical activity involved.  Use to, I could carry sacks of feed, bales of hay, etc. without any problems.  Now, I can still carry this stuff, but I have to stop and take a "breather" after one sack.  My Hr is up and I am breathless.
I am in the process of requesting all of my records and am reading over them.  I just saw that in those particular records and was wondering about it.  The dr never mentioned any of it to me.  If I am not mistaken, it even says something about a mild case of Afib (if that is possible).  Who knows,  I may even be reading it all wrong.
Thanks for the response and the links.

[MarisaV]

Sorry to hear that this is affecting you work... but, hey, I admire you! I sometimes have to stop and reast 3 times... to make the bed!. Keep on carrying those sacks and bales !!  :-)

Its not unusual for a Doctor not to mention a prolapsed mitral valve to a patient if its not causing any symptoms (I don't like this practice, but it seems common). I guess they don't want us to worry over something that's generally not worth worrying over. I had  a prolapsed mitral valve and heart murmur and it wasn't mentioned to me, untill an Insurance Doctor denied me Insurance... then I found out the Family Doctor had discovered the heart murmur when I was 11... never told me, or my parent's.

Recently, while investigating my shortness of breath, they discovered I have an aneurysm in my right ascending aorta, up near the aortic arch. The pulmonoloigist, who ordered the CAT scan, didn't even mention it. I knew they'd discovered it, because I learned that you should always get copies of test results and question them. The pulmonoloigist wasn't going to mention the aneurysm until it got bigger. What's worse, is he wasn't going to recommend any treatment (to slow the growth rate down).

I went to the Cardiologist and he's like, "Of course you should be taking a medication for the aneurysm... a beta-blocker... which he also hoped would help the Dysautonomia"

If I hadn't of obtained copies of the CT Scan results, and hadn't of gone to the cardiologist, no preventive treatment would have been taken, and the Pulmonologist would have just waited until the aneurysm had grown until it was big enough for surgery (Open Heart Surgery!!).. grrr

My opinion... don't be a patient of a doctor. Be an active participant and partner in your health care with your doctor(s).

Mar

[acesew]

I am trying to do that now.  The one thing I realize is get records on a regular basis.  It is so hard to request a bunch of them at one time.  

What concerns me is that the whole time I was under the care of this cardiologist, I would tell him that my arms, hands, and feet were sweeling;  feet and hands turning purple or red;  tingling and numbness in extremeties; and this guy just ignored them and said that that wasn't happening.  I could have probably already been diagnosed it he would have just paid more attention and stopped denying that something was happening.  So this makes me wonder what else I don't know about.

Thanks for the input and advice.  I am going to a new cardiologist next week and maybe he will be able to shine some light on this also.