Avatar universal

PAF, Complex sleep apnea and MSA

I am curious.  In the area in which I live, PAF or autonomic dysfunctions in general are not well known in the medical community.  My doctor (the one I have finally stuck with) finally realized that there was an autonomic issue to my medical problems, but admitted that he was not well versed in them over all.  The neurologist that finally diagnosed me stated that while she can diagnose it, she does not treat it or manage the patients she diagnoses.  She essentially has the philosophy that since there is no official treatment per se she makes suggestions to the general physician and allows them to manage the patient with 'treat the symptoms' type care.  My reason for sharing this information is to allow you to see why I question so much of my care, diagnosis and treatment.  I love my doctor, but he himself does not see the differences in the many types of autonomic dysfunctions and often lists my diagnosis as POTS even though the neurologists that worked together to diagnose me call it PAF...

Here is my concern.  I have recently been found to have sleep apnea as a new diagnosis to add to the growing list.  In my research, I found that a study from Vanderbilt stated that sleep apnea is not commonly found in PAF, but more common in MSA.  Let me say that I do not have 'simply' obstructive sleep apnea, but more central or they say possible a complex sleep apnea.  So, the causes are more neurologic related that physical obstruction.  

It is not that I WANT the diagnosis of MSA, but I guess I would like to know if it is more likely.  I am a fairly young mother of two and I guess I would like to know if I should push the doctors to look harder into this.  If I have MSA rather than PAF, I guess I would want to know if my life/quality of life is likely to be drastically limited.  

Does anyone have more information on this subject?  I have looked and researched and I was an RN before I was disabled, so I do understand the studies and such, I just think that I have a slightly off view when looking at them since it is about me that I am seeking the information.  

Should I just sit back and accept each day as it comes or should I push for a little more diligent research on the part of my doctor?  I think fear is overriding my ability to think this through rationally.
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612876 tn?1355514495
Hi!  It seems that you have found and posted on an outdated, "dead" thread in our forum.  We suggested that community members instead start their own new threads to keep things current and to get the attention that their issues deserve.  Old threads such as this may contain outdated information and the members that have posted in them may no longer have the same issues/questions or may not be still awaiting responses (for example, the user who started this thread, "mommatney" appears not to have posted anything on MedHelp since Aug 2010 when this thread originated).  

To start a new post with your own discussion/question, click on the green "Post a Question" button at the very top of a page within our Dysautonomia Community.  Looking forward to talking with your further,
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Avatar universal
In researching a new diagnosis for myself in addition to my previous diagnosis of Autonomic Dysfunction (diagnosed thru Vanderbilt) I find your questions much the same. I can only provide what I now that has occurred with myself as each of us that are diagnosed are different and progress with the disorder differently as with any Neurological disorder including treatment.

I have been lucky in that my progression (and not all that are diagnosed with Dysautonmia progress further) has been slowed since my diagnosis in 1999. Throughout the ordeal it has been imperative that both me and my husband stay on top of research, doctor visits, symptoms, changes. etc., because many doctors do not see patients with this disorder.

For us it has been very helpful that when we find that a doctor does not know, is not willing to expand their knowledge or has plateaued in what they are able to do, we look for research new doctors.  Yes it is hard to start all over however things change so quickly with the research on this disorder and those problems surrounding it that had we not stayed on top of the information and research ourselves I do not know where I would be today. That is not demeaning any doctor we have seen - it is simply growing with new studies. We have learned something from each doctor I have seen.

I have now been diagnosed with sleep apnea - which complicates matters and we will not know for a few weeks how complicated it will become. I do know how it has changed my health and abilities however. I do have an appointment with Mayo Clinic coming up and am very excited about that. I am hoping that the Autonomic Dysfunction, Autonomic Neuropathy, valve prolapse and now sleep apnea will be looked at in their entirety instead of separately which is normally the case.  
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612876 tn?1355514495

Your profile says you're a fellow Ohioan?  If so, if I were you I would do everything necessary to travel to Cleveland Clinic and be seen at the syncope/autonomic clinic there.  I'm a patient there myself, and that's definitely THE place to go in Ohio to get the diagnosis you're seeking (and have confidence in it).  I'm also a patient at Ohio State University Medical Center, and though they have some doctors that are understanding of these disorders, they do not have any of the cutting edge testing equipment that Cleveland Clinic has.  Case has *most* of what Cleveland Clinic has, but when it comes to the question of MSA ... well, you're a nurse, so I'm sure you understand the gravity of the question you're asking.  Just go straight to the top and get the answer that will put your mind at ease.

Here's the page where we have the contact info for CC:


That being said, I think that considering your age and the symptoms you are describing, MSA is very unlikely.  I'm not a doctor; I'm not a nurse; I'm just a patient who reads medical journal articles and medical textbooks.  Even a doctor can't diagnose a person over the internet, and my novice hunch based on a few paragraphs likely isn't worth even two cents.  But my flimsy hunch is that it's extremely unlikely that this will end up being diagnosed as MSA, for whatever minute comfort that is to you.  

In my experience, if your doc calls and makes the referral to Cleveland Clinic and faxes your records over, they should be able to get you seen in a matter of 2-3 weeks.  If you have far to drive and/or have difficulty with transportation issues, make sure to let them know that when you schedule; normally, they only give special transportation consideration to people from out of state.  But if you tell them, they will try to accommodate and squeeze things into one trip as much as possible so you don't have to keep making trips back and forth.  Make sure that your sleep apnea is discussed by your doc when the referral is made; they may want you to be seen by a sleep specialist while you are there or even have another sleep study done there.  (They sometimes like to repeat tests if they don't "like" the protocol for the test that your local hospital used and want it done using a different protocol, or the only way to properly get their own interpretation of the original test is to repeat it.)

Oh, as for more information on MSA, have you been solely looking at journal articles?  Do you want recommendations of medical texts that include info on MSA and PAF?  Let me know if so.  If you don't have medical library access, you can get the books through interlibrary loan through the public library system, though it may be a bit slow.  I've been able to get several loaned out of medical libraries in different areas of Ohio, and even from as far away as NY.

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Avatar universal
dear mommatney,

i wan to write a long reply    to you , but don't have my sences on today:)
You asked what is more likely.....first i could not say what you do or do noit have,
BUT....PAF or th elikes would be.

what other symptoms are you having?
HAve you had brain mri done?

I know easier said that done, please try to not get so far ahead of yourself.
If you are not convinced with what they are telling you, can you get second optionnns in a university hospital setting?
hoping you are 'ok' today, amo
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