shy drager

[rossman]

Anyone in the group with shy drager? If so, are you up for a few questions? Which type do you have? What were your early symptoms like? What was the onset like and how long did it take to progress? How long have you had it (the symptoms, not the diagnosis) How are you today? How do you cope?

My doc said that what I have acts like shy drager, except for one thing that he claims rules out the possibility of this diagnosis: I have had these symptoms for about 7 years. I don't know if he is correct because what I have read is that shy drager takes 7-10 years to get severe.

Rossman

[calypso]

If you haven't been diagnosed with Shy Drager, I would be careful to assume your illness will take the same course. What are your symptoms? Many here faint and have dizziness, blood pressure fluctuations and other issues that are similar to Shy Drager. Perhaps you have POTS or another form of dysautonomia.

Try to be specific in asking what symptoms you'd like help with to others here. I bet you'll find many others with similar issues.

Amy

[rossman]

If you haven't been diagnosed with Shy Drager, I would be careful to assume your illness will take the same course. What are your symptoms? Many here faint and have dizziness, blood pressure fluctuations and other issues that are similar to Shy Drager. Perhaps you have POTS or another form of dysautonomia.

Try to be specific in asking what symptoms you'd like help with to others here. I bet you'll find many others with similar issues.

Amy

Hi Amy,

I really don't believe that I do have shy drager. I sure hope not. But, there are a few things that caused me to consider putting a little more energy put into ruling it out. Those other reasons are basically that I have other body systems malfunctioning as a direct result of the dysautonomia.

It was a because of taking midodrine and subsequently having all my body systems work properly that I was able to see that I have multiple organ systems that have not been functioning well. In fact they are severely malfunctioning. I thought I only had the cardiovascular and cerebral hypoperfusion s/s (signs and symptoms) like cognitive difficulties, neck pain, uncoordination, faintness, etc. And those are enough. In fact, I am disabled from those alone. But, now I am seeing problems that I understand to go beyond these cardiovascular s/s. These s/s also do not fit into the typical category of OI, POTS, NMH, CFIDS, etc. I have multiple system problems. Multiple system malfunction sounds like shy drager. That's why I was asking for anyone dealing with this disease. I just wanted to compare notes. And, I thought I would first ask if the group had any members with this disease before listing all my suspect symptoms. I did it this way because I really doubted the group had anyone with shy drager. And I didn't really want feedback about it from a person not personally familiar with the disease. Any one of us could look s/s up in a book about a disease, but I was hoping to connect with a person with the disease.

Hope this helps,

Rossman

[calypso]

I totally understand about not fitting into a certain illness category, Rossman. I also have symptoms in various organ systems and can't make much sense of them. But just because you have this overlap doesn't mean it's not general dysautonomia, or a mitochondrial disease, or a bizarre virus, CFS or whatever. So many people have symptoms that don't fit the mold. I don't want to discourage you from comparing notes with a Shy Drager patient, but I just want you to know it may be hard to judge your outcome and future by that -- the other person's prognosis obviously isn't good. So just make sure you remember you HAVEN'T been diagnosed with it, that's all I suggest.

Have you been seen by a good autonomic specialist in a major city? I don't know your history but hope that you have had a complete workup.

Take care,

Amy

[Guest Belinda]

I also have multiple systems that dysfunction from GI, swallowing and gastroparesis to OI to vision to breathing I will be seeing Dr. G in April and will let you know what his opinion is on this.

Belinda

Like others said don't fret until you know for sure..HUGS

[MightyMouse]

If you haven't looked at the main DINET site, http://www.dinet.org please look at the sections on the symptoms, causes, detection and myths--and don't skip the what helps portion, as it's a review of rx and nonprescription treatments. You will see there that there that ANY body function that involves the autonomic system can be affected: breathing, digestion, bladder functioning, sweating, sexual response, blood pressure regulation, heart rate regulation, etc.

Also, you should know that true msa/shy drager would mean that you probably would no longer be among the living if that's what you've had all along... you would have parkinson-like neurmuscular problems, and would be progressively degenerating. http://www.shy-drager.org/

Many here have multiple systems involved in their illness, myself included. I have migraines, asthma, a dx of CFIDS, EDS III, POTS, NMH/NCS, severe allergies, scoliosis, and the list goes on. Also, spinal issues can be associated with ehlers-danlos, which can be a cause of ans dysfunction. Personally, I have EDS III. As a result, I have disc herniation in most of my spine, problems with healing, joint dislocations, nerve degeneration due to compression of nerve roots, etc.

GI problems have been my most troublesome symptom through my life, including constant nausea, reflux, slow motility to no motility (gastroparesis), etc. Also, I recently had a spontaneous lung collapse, and I've had pleurisy mutliple times (supposedly a common issue with EDS).

Lastly, before I had my spinal surgery, I had losses in my balance, muscular control in my legs and arms, and sensory losses (temp and touch). Most of that was recovered following surgery, but has since reappeared to a lesser extent due to a chain reaction of disc herniations.

The best advice I can give you is to read up using reliable sources, and not to forget that folks like us are just as susceptible to typical problems like spinal issues, infections, etc., as the regular population. EDS-ers are more prone to spinal problems than the average person, so sometimes it's hard, if not impossible to separate out what is an EDS symptom vs. what is a POTS/NCS symptom.

[rossman]

Hi everyone,

Thanks so much for all the responses. Your responses gave me what I was looking for. All of you describe s/s that I have on some level. I didn't realize that one could have mulptiple system malfunction without it meaning something dreadful, like shy drager. Maybe I was getting a little paranoid. I guess it really does make sense that one would have mulptiple sytem malfunction with dysautonomia without it necessarily being something as serious as shy drager. Anyhow, thank you for supportively responding to my temporary hysteria.

Most of my life I have been very happy and healthy. I was a cross country runner. A very vital energetic person. I was always a little wound up believing that I was invincible. I started getting sick about 7-8 years ago following an extremely stressful period in my life. At that time I was completely fed up with alopathic medicine and went strictly alternative. I did this because the alopathic docs were all wanting to just feed me anti-depressants and they weren't helping. Kind of understandable that they thought it was depression because I had just been through ****. But, I already had PTSD and my life came apart at the seams (again) with my kids in a car wreck killing my son and severely permanently brain injuring my daughter. I got divorced, lost my property, my dad died unexpectedly, filed bankruptcy, graduated nursing school and was studying for state boards all within a few months. Basically, I was overwhelmed. And being the type A superman that I am, I ran around like an army medic trying to patch it all up. Horrendous things continued happening and it got worse and worse until I crashed into a heap of grief and despondency. Problem was that I didn't have the sense to stay hunkered down. I got back up and went at it again and again trying to fix the ongoing disasters. I continued until I couldn't work or function very well. So, it's undestandable that they thought I was depressed. And maybe I was, somewhat. But when I decided to leave alopathic medicine and started really researching some things, I found that I had blown out my adrenals. DUH!! So, I went to work on the adrenals with some pretty good results. But, it was too late because I was beginings to have immne system problems that acted very much like Myalgic Encephalomyelitis. (I do not like the term CFIDS. It's so innapropriate for a title of an illness that is so very much worse than just chronic fatigue.) What I experienced with ME was debilitating and much, much worse than any of these other manifestations of dysautonomia that I've experienced. Anyhow, I got the immune and adrenal problems minmized enough to see that what was at the core (so it seems so far) of all this is a dysautonomia. It has taken some very drastic measures to get control of the immune problem. I am currently mostly struggling with OI. I was so severely sick with the immune dysfunction before that I coudn't see the dysautonomia. Now I can see that it seems the dysautonomia was the core issue all along. And this is what I read in all the research on CFIDs and FM. So, the question is, did I set off a predisposition to dysautonomia than I'm now stuck with, or can I correct this illness backwards in the opposite direction that it unfolded. So far it has worked. I am at this place of looking at and hoping more work on my adrenals will correct the dysautonomia. After all, the catecholimines from the adrenals are major in autonomic nervous system function. I believe that what happened was that I had undiagnosed adrenal catecholimine insufficiency as well as adrenal cortex problems. This undiagnosed insufficiency caused the dysautonomia. Or, it may be the dysautonomia. Makes sense with my history and symptoms. But, we shall see. I certainly do not want to go any further being misdiagnosed and creating cascades of other ilnesses, like what has hapened previously. I am trying to find a better GP. Anyone know good a doc for this problem in northern California? On the good doc list I see specialists listed only in southern California. There are a few GP's listed a few hundred miles away that I'm considering. But, if I am going to go hundreds of miles it shound be to a specialist, or at least a very good GP who knows this stuff well.

So, I am new to what dysautonomia is all about and how much of an issue it is for me. I cannot function with the OI without Florinef. I am trying to find a better alternative than florinef because of having a difficult time getting the BP balanced out. Don't want to stroke out. Can't take midodrine.

I want to thank everone for your support. I am scared and tired of struggling with this problem. It has robbed me of my life. I'm glad that you are all here. Sorry that I went on so long. Promise to now do tat next time. Kind of wanted to let everyone know what I'm dealing with.

Thanks

Rossman

[MomtoGiuliana]

Rossman

I am so sorry that you have been through so much--it sounds like enough grief and pain for several lifetimes. You must be a resilient person.

Regarding "the question is, did I set off a predisposition to dysautonomia than I'm now stuck with, "

please do not blame yourself for your condition. I think many POTS patients end up asking themselves what they have done to cause themselves to have this condition, compounded by the fact that doctors tend to tell us our symptoms are a result of anxiety and depression. I am not aware of any studies that show a specific connection between stress and developing POTS. However, stress can make POTS symptoms worse, I think--as is true of other conditions.

It makes sense to seek out a specialist for appropriate diagnosis. If the doctors listed are too far away to be practical for you, can you try to see an electrophysiologist in your area? They are usually knowledgable about POTS and can properly interpret tilt table tests. If you have not had one of these tests, that would be one of the first steps in diagnosis.

Many of us have found good relief from a variety of medications. You mentioned you are on florinef but are experiencing high blood pressure? Are you also on a beta blocker?

Take care and let us know how things go with getting a diagnosis.

Katherine

[DSM3KIDZ]

Rossman,

To experience all that tragedy and still be around to share your history must mean you are a very strong women.

I hope you get some relief when you get more help with the adrenals.

I was completely healthy one day and sick with autonomic dysfunction, POTS and Gastroparesis the next. I had a stomach virus and a very stressful few days and felt for the past year that I predisposed myself to this illness.

Well after getting as low as I could possible be I realized I can no longer hold myself accountable for being sick. Yeah maybe the virus had something to do with it but the stress couldn't have caused it. I've asked my very reliable doctors if I could have caused this and they told me no many times. Anyways so I have to let myself off the hook and deal with what is and not what happened. Try not to hold yourself accountable for the things we can't control in life.

Hang in there and I hope you can find a doctor that will help you get the answers and support in finding treatment.

Your in my thoughts

Dayna

[rossman]

Rossman

I am so sorry that you have been through so much--it sounds like enough grief and pain for several lifetimes. You must be a resilient person.

Regarding "the question is, did I set off a predisposition to dysautonomia than I'm now stuck with, "

please do not blame yourself for your condition. I think many POTS patients end up asking themselves what they have done to cause themselves to have this condition, compounded by the fact that doctors tend to tell us our symptoms are a result of anxiety and depression. I am not aware of any studies that show a specific connection between stress and developing POTS. However, stress can make POTS symptoms worse, I think--as is true of other conditions.

It makes sense to seek out a specialist for appropriate diagnosis. If the doctors listed are too far away to be practical for you, can you try to see an electrophysiologist in your area? They are usually knowledgable about POTS and can properly interpret tilt table tests. If you have not had one of these tests, that would be one of the first steps in diagnosis.

Many of us have found good relief from a variety of medications. You mentioned you are on florinef but are experiencing high blood pressure? Are you also on a beta blocker?

Take care and let us know how things go with getting a diagnosis.

Katherine

Hi Katherine,

Thanks so much for your response. No I'm not on a beta blocker. I mostly have trouble with hypertension on florinef in the Am. Everyones BP is higher in the AM because of the release of corisol. But, for me enough florinef to stop the s/s (signs and symptoms) during the day, means HTN (hypertension) in the AM. I am having a very difficult time getting it right. Also, even before going on the florinef, I usually didn't have OI s/s in the AM. I usually start in with the OI s/s as the day goes on. This usually would indicate that one doesn't have a fluid volume deficit. As you know, the mechanism of action for florinef is to retain sodium which causes fluid retention, and ergo increasing the blood pressure and easing the s/s of OI. Even though it seems that I don't have a problem with fluid vol deficit, the florinef eases the OI s/s. But, I suspect it's not the right drug for me. So, do people take a beta blocker with the florinef? Sounds kind of odd to take an anti-hypertensive with a drug designed to increase BP. Maybe the mechanism of action works better. Let me know.

I will look into the electrophysiologist and tilt table testing. We have a few neurologists here, but I highly doubt they have this equipment. I called and asked their receptionist if the doctors were familiar with diagnosing and treating dysautonomia's, and it didn't sound too good. I will continue the search.

Thank you,

Rossman

[rossman]

Rossman,

To experience all that tragedy and still be around to share your history must mean you are a very strong women.

I hope you get some relief when you get more help with the adrenals.

I was completely healthy one day and sick with autonomic dysfunction, POTS and Gastroparesis the next. I had a stomach virus and a very stressful few days and felt for the past year that I predisposed myself to this illness.

Well after getting as low as I could possible be I realized I can no longer hold myself accountable for being sick. Yeah maybe the virus had something to do with it but the stress couldn't have caused it. I've asked my very reliable doctors if I could have caused this and they told me no many times. Anyways so I have to let myself off the hook and deal with what is and not what happened. Try not to hold yourself accountable for the things we can't control in life.

Hang in there and I hope you can find a doctor that will help you get the answers and support in finding treatment.

Your in my thoughts

Dayna

Hi Dayna,

Thanks so much for your feedback and support. It means a lot to me. I never really even thought about the issue of me blaming myself for this illness. I guess in a way I do because I have believed that it was my driven, type A personality that caused me to overstress myself in dealing with the crisis' which is what set off the illness. It certainly is what blew out my adrenals. But, how could I not respond like that. It was my family. My daughter is now independant and raising my beautiful grandaughter, due in part to all the energy I put into helping her get as well as possible. So, I think that you all have something there with blaming myself. I will look at that more closely.

Thank you,

Rossman

ps. I'm a guy

Thanks everone for your help. I hear you that I need to get to an autonomic specialist to get this properly diagnosed. That will be my top priority with this. I most definately have a dysautonomia. The question is whether it's primary or secoundary.

Thanks everybody,

Rossman

[MomtoGiuliana]

Rossman--I actually don't know if florinef and a beta blocker would be prescribed together generally--but I think there are some patients on this forum who take both. Some of us have a problem of both volume deficiency AND high blood pressure, the later especially on standing--even though that sounds counterintuitive.

It may very well be that florinef is not the right treatment for you. Hope you can find an electrophysiologist who can do and evaluate a TTT. Make sure you talk to the specialist about the meds you are on and when and whether they should be discontinued before the test. A lot of patients on this forum have had problems with inaccurate tests b/c of interference with meds.

Katherine

[DSM3KIDZ]

So sorry about the sex mix up. It's just there are alot of women on this board so I just assumed.

Well you are a very strong MAN in dealing with all that life has dealt you. I'm glad to hear about your daughter's independance, that's awesome!!!

Good luck

Dayna

[dianaD]

Hi Rossman,

I'm so sorry for the struggles you are having. I think that most of us has probably gone through something similar to you, where so many systems are affected, it's hard to believe it is "just" POTS and/or "chronic fatigue". PLEASE! Those terms don't even begin to describe the level of debilitation we experience.

I must tell you that I DO NOT believe you have Shy-Dragers. I have known 2 people with Shy-Dragers, and I, too, was afraid that was what I had, but I am pretty confident that it is NOT your diagnosis. Shy-Dragers is very aggressive, and almost immediately, both of my friends had parkinson's like symptoms, and extreme balance problems, beyond the POTSY fainting, weakness, dizziness, etc. I also, do not think you would still be here, and certainly not in good enough shape to be on the computer!

I do think that autonomic dysfunction involves widespread organ involvement, pretty much everything that is "automatic" is broken.

I wanted to leave you with some hope, though. I've dealt with this for a year and a half and I think I'm coming out of it, to a great degree. I never thought it could happen, but I'm feeling MUCH better now, and have not had a "surge" in about a month. Hang in. There WILL be a cure someday and you will find a medication to help you until then.

Meanwhile, we are here for you.