taylortotmom

Congratulations on being able to return to work! It sounds like your neuro is really considering your needs so that in itself warrants a congratulations, as well! I hope it all works out for you. My kids are back in school and I am really starting to miss working. Good for you! Carmen

I have peripheral vascular disease which in my case involves the blood vessles in my leg being dysplastic. Carmen

It sometimes helps to find a wall to brace yourself against as you are walking (just touch your hand to the wall). It helps me, at least. Carmen

Melissa, I am so sorry for all of this you are going through. I'm sending you a big hug. You are in my thoughts, girl- hang in there. Carmen

Sending lots of love and good thoughts your way, girl- hang in there. We're all pulling for you. Carmen

Yes and my doctor prescribed Klonopin for Restless Legs Syndrome- it does help. Carmen

Unfortunately, the quality of medical care is often contingent upon whether or not one has insurance. It is a terrible reality. However, there are many good, compassionate doctors that will work with you even without insurance or financial means. Your county health department may be able to help you. There are a lot of needs-based clinics the public doesn't always know about. So, ask- and keep asking. Somewhere out there is someone who will treat you and help you get your meds. Don't despair and don't give up. Carmen

I can handle one drink if I'm feeling okay. Any more- problems. So we are all different. Carmen

Well, if you ever need to housetrain a goat- you may be on to something! How cute! My mom tells the story of training for children. Get two goats, take them to the grocery store, and you have to pay to for anything they break. If you can handle that- then, you might be ready for kids. Carmen

The moth is beautiful. The spider, well, lets just say my tachy issues would have kicked in overdrive if he was in my living room! Carmen

So cute! Carmen

Stairs can be bad news. Bradycardia can certainly make one dizzy as can the low blood pressure issues. It sounds like you did the right thing by getting up slowly but it is possible your pressure and/or heartrate were abnormally low since you had been laying down. It helps me to take a deep breath before attempting to go up or down stairs. You can also try to raise your blood pressure before getting out of bed by doing light leg bends. Definitely discuss, this with your doctor. Of course fluids and salt are always good things to have near as well. Good luck I know that was scary for you and your husband. Glad to hear he was nearby and aware of wht was going on. Carmen

Uggghhh, I'm so sorry! The T and XL is probably Toprol XL which I was on for years for my dysatuonomia sxs- so that's a good thing. There are "ologists" unfamiliar with dysautonomia so it is not unexpected a PA would not be familiar with the disorder. Your doctor should have seen you however, and answered any questions you have- or she could have a least called you if necessary. I would let my doctor know about my disapoointment and ask her the best way to ensure seeing her on your appoinments- you have the right to see who you want and not be turned over to a PA. If she is not willing to comply, then find another cardiologist. I know it is hard, hang in there. Carmen

Florinef helps a lot of folks- good luck and good attitude! Carmen

When I was approved, the SSDI doctor at the hearing stated I had three qualifiable diagnoses which are all related (we know this). I know one code pertained to the arrythmia, I think one was the NCS, and the other I think was hypotension. So as far as codes, there isn't a code for dysautonomia but you CAN get approved for disability with dysautonomia but for coding purposes they break it up according to symptoms. Carmen

What you are referring to is MVPS which is different from MVP. Doctors acknowledge mitral valve prolapse- it is a structural abnormality- although some discount its significance. The problem is Mitral Valve Prolapse Syndrome which refers to the dysautonomia which sometimes accompanies MVP. This is what is frequently dismissed by the medical community. But, that is starting to change- thankfully. The others gave excellent advice regarding finding doctors who do know about MVPS, acknowledge it, and know the proper course of action to take with the disorder. Also, things are changing everyday. A lot of the information you may find is extremely outdated. I had a doctor tell me once medical information is in print it is already out of date because of how quickly things are advancing with research, etc. So, something to remember. Carmen

Oh dear, our fishy is caught on a line (or two, or three, or four). Bless your heart sweetie. Know we are all thinking of you and hoping some relief is in site for you in whatever form it can show up. I'll have to write a song for you this week Carmen

Oh, Rebecca your story sounds painfully familiar. I do not have POTS but I have severe dysautonomia. I have NCS, severe hypotension (my blood pressure bottomed out on my TTT), severe hydration/heat issues among some verified cardiac abnormalities. Hopefully, you will soon find a doctor that understands how variable the dysautonomias are and that POTS is just one segment of the dysautonomia population. As you said, the treatment is essentially the same regardless what type of dysautonomia one has- so increased fluids and salt among other things helpes most of us. Have you done any nonpharmacological management while waiting for a diagnosis on your own? Do any of this things help? It sounds unreasonable that your doctor is looking for a specific 30 pt increase in pulse during the tilt to diagnose you. While you may not have POTS, you very well could have another dysautonomia. Let me also say that you may have dysautonomia that is NOT POTS and not MSA. So don't necessarily assume you have Shy-Drager because you don't have POTS. Yes, it is possible. But, it is also possible and very likely that you have a more generalized dysautonomia that just doesn't quite fit in with any other subset but isn't anymore dangerous (fortunately) than POTS. So, there is a whole lot of grey area in these disorders. Good luck to you- I hope some of this makes sense.

A few forum members have lyme disease and they might can offer some input. Based on what you have described, it does sound like some ANS problems are going on as well. Of course, Lyme disease is often a precursor to autonomic dysfunction. The one suggestion I might could make is to inquire about her iv's- is she getting lactated ringers or just saline or something else? Lactated ringers have helped me tremendously because they not only help with hydration but they have high sodium and potassium content which are extrememly important in the management of dysautonomias. Good luck to your family- may the doctors find a a successful therapy for your sister soon. Carmen

Sonotech- I think you show a lot of strength by expressing how hard it is to make and keep friends. But you know, I think this is true for most anyone- even those who are well. We live in a mobile, transient society where people are always relocating (my family included) and thus having to start over repeatedly with relationships. It's hard to foster friendships when you know you may not be in an area for long. In addition, at various points in life we find ourself having less in common with those we previously had a lot in common. For instance, married vs single, parents vs non, etc. These relationships typically wax and wan as life circumstances change. I have been on MySpace since Jan. and it is increasing by leaps and bounds everyday. Currently there are over 90 million people on MySpace. From a social psychology standpoint, that tells us there are a lot of lonely people in the world craving human reltionships- not just sexual/dating but friendships. We are social beings- we need human contact- it has been proven over and over. But, friendships require work. True friendships take time and vulnerability. Meaning, we have to let our guard down and risk getting hurt in order to truly get close to others. And there is the fear of rejection. I have learned that sometimes people will indeed reject you- it is a fact of life. But for every failed friendship, there are ten other people who will gladly let you into their lives. So.... keep trying and don't think that someone's lack of response is necessarily a reflection on you. Folks with dysautonomia are sick, as you well know, and sometimes a short e-mail requires more than one can give. But hang in there- and don't give up on people. You have to just keep putting yourself out there- I know- easier said than done. Carmen

Have you asked your husband why he does not want a dog? It sounds like the two of you should have a heart-to-heart. This is obviously something important to you- and something your husband also feels strongly about. So... talk. Maybe after talking you can reach a conclusion with which you both feel satisfied. Carmen

Hi there, I too have a pacemaker and no, it has not greatly improved my quality of life. But what has.... is fluids. I have a port and get 2 liters of lactated ringers a day. This has helped me more than any other treatment. So, something to discuss with your doctor- if iv fluids might be beneficial. Good luck. Carmen

I am so sorry to hear of your little guy's troubles. There is a dynakids site devoted to children with dysautonomia. Maybe someone here can provide the link? There are other members here who have children with dysautonomia (on this site) and I'm sure they can offer you some advice/support. My heart goes out to you and your son- this is a tough thing for adults- it must be especially hard for a child. Hang in there and take care. Carmen

I have severe MVP to the point that the murmur hurts the doctors ears' who listen- they always call in other nurses etc. to listen because it is so unbelievably loud. Unlike a lot of other folks here, my dysautonomia is not POTS. Essentially, my dysautonomia affects my central nervous system and peripheral nervous system to quote my doc- I have a double whammy. But, yes, I have MVP (with MR)- big time. Carmen

Mellissa, I'm so sorry you're having to deal with the stress of insurance while so sick. Here are prayers and positive thoughts that the insurance company does te right thing. Hang in there girl, we are all pulling for you! Carmen