Kite#7

HELLO ALL, Its ***** to be right ; but all the indicators were there for my Kids. 2 have been officially DX'd with others to be tested . As I have stated in many of my last posts I have rcently purchased a POWER PLATE which I am putting extraordinary faith in. I hope it will be the godsend I am expecting for ALL of us. I read with great inspiration the stories on this forum so I know my Kids will be Okey Dokey. However, it is always better when its just you!! Kite 7

Hi All, Magnesium as a supplement is great for nerve support and smooth muscles opperation. It helps to in the operation of , motor unit function(nerve to muscle/connectivetissue messaging ) as well as calcium absorption. It is recomended for blood pressure and tremor due to these aspects. I use it in combination with Creatine and a compliment of B vitamins Calcium, Potassium as well as Essential Fatty Acids , in support of these conditions. I hope this Helps a bit. Kite 7

Good morning Nina, What an Inspired Goal !! As always , I would suggests you re-examine nutritition program as you have signifcantly increased your regimen for a particular goal . When the specific RACE DAY comes - be sure to prepare nutritionally - ie HYDRATE - DAYS before ssodium intake CARBs - complex to simple etc. I think with your history of SPINAL problems and with the pounding that is inevitable with running, GOOD SHOES are a must. IT is worth the investment. Even if you never enter another race ; having a really good pair of shoes will help to balance your running style and give you more comfort,Perhaps alieviating some of the lower back throb. This could be caused by hip movement during running , rather than weakness in the back per se. Also want to make sure that you stay completely relaxed thru your upper shoulders as this will also allieviate tighness in the lower back. The more relaxed your upper body is , so becomes your breathing , thus becomes your stability thru your abdomen - relieving stress on the low back. The good shoes you can always use after the race TOO. Good luck !! HAVE FUN !! kITE 7 Ps not just a PT also had 2 cervical surgeries /plated c3-c7 & 2 lumbar , lucky THOUGH no thoracic yet but still tryin'

Hello All, Mighty Mouse , the reason you feel "bad" during the first few minutes of exercise is because your body is going thru what is called the EXERCISE RESPONSE. Our bodies start in O2 defict and try to catch up , thus increase respiration. Basicaly, You are using the stored O2 from your muscles in the form of ATP / GLYCOGEN to intiate the exercise and get the muscles , conective tissue and joints moving/ reacting. It takes approx. 2- 3 minutes to equalise breathing , o2 intake , heart rate to a comfortable level. this is true for all people. It is important to prepare for exercise. You must be sure to Hydrate prior to your workouts. This will help to prevent lightheadness , bloodpressure drops ( inas much as we can) . But hydrate hours before your scheduled workout aswell as during, It is also important to make sure that your diet is in order. Pre training meals are extremely important to haow will feel during and with recovery. As are post training meals. Do not discount Sports drinks. As far as my feelings about TRAINING - That is well documented in past posts. The PILATES REFORMER is a wonderful machine but , extraordinarily expensive .I believe the machine you are refering to is the Total Body machine, My take on this is anything that helps you to perform exercise properly , in a balanced , safe , Inspired way -is worth the investment. As is the hourly rate of a good referenced Personal Trainer. Kite 7

Hello All , As most of you know I have recently moved to BC from Ontario with my LARGE but wonderful and supportive Family. To make that part of the story short ; It has been and is FANTASTIC !!! Weather and lifestyle certainly are helpful. Not to mention just plan Fun ; as was our trip out. However one MAJOR casualty of this move was that I sold My Personal training & Yoga Studio. So I no longer have an extensive array of equipment at my disposal , nor do I have My inspiring clients to motivate ME whilst I train them. I did try to train in a public gym here , but it was difficult as symptoms would expose themselves. So I decided to buy some equipment to maintain my very specific regimen. I bought the basics so all my Family could Train But I have been reseaching this VIBRATION technology for sometime now and saw that POWER PLATE WAS OFFERING A HOME UNIT. I have been , as you are all probably aware, using wobble boards , Med balls , Swiss Balls etc . to create a similar effect in my training as you can recieve with this MACHINE. With weights & wobbles etc. it is very involvrd & requires time. With the Power Plate it is Quite simple & requires 15 to 20 minutes 3 -5 times / week The BENEFITS of this technology are many fold. Primarly it will help to increase BLOOD VOLUME and manage BP. I t will help to balance skeletal muscle and increaase lean muscle mass. It does this by working deep into the muscle groups and connective tissues using more of the fibres and creating more capillaries stonger & more dense bones. This also improves O2 exchange. The machine is helpful in improving motr unit function as well with the increase of muscular balance and use of more muscle fibre thus improving messaging of the nerve to the muscle. For more info See the web site www.powerplateusa.com . There are other units on the market ,however I don't believe any offer the home unit option. I will be recieving mine in about a month so I will keep you posted about its effectiveness. I do recomend that if you are interested check out some of the research on the web for various machines. The original technology was invented in Europe and machines are available in Germany & I believe Italy. It is not a MAGIC pill ; ButI do think with proper nutrition it could be A HIGHLY EFFECTIVE machine to help in our fight against DYSAUTONOMIA , EDS ( which my kids are now being tested as my WIFE has MVP ). The home unit is about $ 3,000 or about the price of a good Multi Station or Elliptical - The commercial unit (which I ordered ) is about double. the difference being the size of the unit Basically. Both units come with resitance straps and you can use Med balls , weights , swiss & Bosu balls with them. SO THAT IS THE POWER PLATE by the by I am in NO WAY affiliated with power plate - just a CONSUMER Slinte' Kite 7

Hello all, Thank you again for your kind regards The POWER PLATE technology that uses high frequency vibration basicly to elicite nerve impulse & deep muscle movement. IT was used in Space to prevent muscle atropy and bone lose. Presently it is in use by many Pro sports teams , RE-hab centres ( Johns Hopkins et al ) and some large commercial gyms . It is recommended for many illnesses such as MS ,ALS . Although these are CNS diseases - I am of the opinion that increasing lean muscle mass and balance , as well as bone density will ultimately help with blood flow. This is 2 fold O2 exchange should ultimately improve as well as vacularity . The benifit of the Power Plate is that it is LOW or NO impact. YOU CAN DO YOGA or JUST STAND ON IT TO BEGIN . IT REQUIRES about 20MINS / DAY. I have been training in earnest for many years and have designed a regimen for myself with these goals in mind , However , it is RATHER intense given what I/WE deal with on a daily basis - HOWEVER IT IS WORTH IT !!!!! But I feel - my humble opinion- now that a HOME unit is avalable , that the Power Plate is a Definite Option. One I am think about SERIOUSLY . Check it out at POWERPLATE USA I have been talking to joe.koehler@powerplateusa.com .He is a VP there and has been very helpful thus far. Oh and by the way I am in no way connected with PowerPlate. It is a technology I have looked at on & off for several years . It has only now become affordable. Kite 7

Thank you Steph , Gena Needless to say the move has been an enormous event for all of us. My 5 kids have adjusted beyond all expectations and enjoyed their summer travels driving accross Canada. We were able to take our time to move which certainly made all the difference in the world so some of the usual pressure was off ; plus we JUST commited to taking our time and enjoying the experience - NO MATTER !! The drive was phenomenal - I drove 1 vehicle and my wife drove another. Suffice to say , we stopped lots. That was the neat part - kinda like our own little convoy. LOTS of STORIES. Our new house is more fitting , literally, for us ; SO that has made life a little less stressful. Not to mention the weather is far more temperate. Steph , I sold my gym !! I missed it very much . Having all that equipment was certainly an impetus to train ,but further to that were the PEOPLE whom I was training. They infact , kept me going. They kept my will strong on those days I could have otherwise folded. I have bought new equipment ( less of course) , but it is that I find the most difficult. I am thinking about investing in a POWER PLATE vibration machine. I have read quite a bit about this technology and thought about it for my studio but felt it was cost prohibitive. The idea though is very similar to the regimen and results I try to achieve with my my personal workouts. I believe using wobble boards , Bosu balls , swiss balls - med balls etc. especially with resitance can inspire motor units , blood flow etc. Anyway , I won't continue to blather on here . Its been a long time between posts. I gonna keep looking back and keep training when I can . I will keep you posted about the POWER PLATE kite 7

Hello all, Jennifer, I have written many posts on exercise regimens , if you recall them perhaps your queries maybe answered if they have not already. Steph always provides very experienced practical advice so you can be certain that her regimen is "tried & true" . I would suggest that you work at no more than 70% max hr ; finding this is easy 220 - age then 70 % of this number. Jennifer , there is a difference between doing Cardio and Resistance training as it affects both your heart rate and the way your body utilises energy. So with that in mind , finding a regimen that incorporates both is best. I also believe that core training /stability training is extraordinarily important for people with Dysautonomias given the variety of symptoms. In fact , in my own training it is a staple and since I have recently sold My Gym I work mainly with wobble boards Swiss balls, medicine Balls ; until I replace my equipment with a home system. Further , I hope all have had a Great summer - My Family & I made our move cross country and are finally settled in , I twas quite a TRIP !! kite 7

WELL DONE !! this is a wonderful post echoing experiences we all share in common. Well written , amusing (to us) and frightenly accurate. You soon realise as a Patient that you HIRE them to facilitate a service for you - your treatment . That being said ; like no other "service" industry your characterisation properly implies that we expect a level of expertise commesurate with the Docs education, facility , credentials and of course FEES. We don't expect to be denied co-operative treatment ; with this I suggest that even thru the stress of diagnosis a Doctor should do there utmost with the Patient to achieve an outcome - not pass the buck as it were. The ease at which mental health issues / physciatric evaluations are bantied about for Dysautomia Patients typifies the lack of understanding in the Medical community not a disconnect. Unfortunately , they want to leave it in our hands. They require us to do the work. To bring them the Evidence as it were. The frustrations ,anger and sometimes fear are valid; It prevented Me from going to the Mayo until my family could stand it no longer. Fortunately , I've had an inspiring GP and Doc at the MAYO both of whom make all the other ones , and believe me I've encountered my share, SUPERPHLOUS . Its my opinion that the regimens are all basically the same. the appt end with the same pats on the back. Test results vary with little imperical difference. Yet, WE know symptoms can and do fluctuate beyond the pale of normalcy. Its encumbent upon us , at this time , to do all we can to YANK this profession into treating this DISEASE. Until then the most powerful treatment is getting up in the 'morrow and finding what works for you , then journaling tellin' the Docs and so on . There is no doubt that stress manifest itself in Dysautonomias , DUH !! It affects the autonomic nervous system but to assume that we are all nuts first is to discredit a REAL oppurtunity for science and research. First thing Isaid to them at the Mayo was that I was nuts and for the benfit of my wallet lets stick to Imperical testing first. Again Ithomas great post Point well taken and presentd ; probably what brought alot of us here. MOVIN CROSS CANADA TODAY Kite 7

hello all, Sorry copied it down wrong. Amongst the few things Ido well you can excluded typing , or ANYTHING that is remotely assiociated with Technology. Presently , my computer has become a mobile unit and I find myself haing to uncrate , unwrap and DE - box it several times per day. So this to is my excuse de jour for incomprehensible web links . Deeplyset if you just try again and remove the p after BMP ie jnnp.bmjjournals.com - then the rest is correct Again my applogies , However futher to this frustration I have in my possesion 75 ft of bubble wrap - Ihave to say it is some of THE best stress relief. What can I say I have 5 kids my Wife has 6. seeya Movin' cross Canada Today Kite 7

hello all, I found a great article while back dysautonomia after traumatic brain injury from the University of Sydney Australia Neurology dept. http://jnnp.bmpjjournals.com/cgicontentfull/67/1/39 In fact in my searches over the years I have found many comprhensive sites in Australia. Kite 7

Ithomas, I have to agree with some of what you describe, having experienced myself. I went to the Mayo twice for extended visits at my own cost. My first two week session left me with more questions really than answers ; and many Imperically stable test results. . Due to the imperical evidence Questions arose from one Doc. At which point extended my stay to go thru further exam with a Neuro Physch , which I left "passing" with flying colours ( pink ELEPHANTS). My dx that visit was possible Parkison's / neuro muscular disease - Drug regimen , watch your exercising and return in a year . Didn't make the year. I went back and thru another battery of tests. Suffice to say it was another Two weeks ; still had one doc question my mental well being. H e obviously had not taken the time to review the previous visit , talk to my managing Doctor , or Me ; and above all was most interested on / in the imperical tests rather than the developing symptoms evidenced by my two visits. I guess what I'm getting at with this is I was / am lucky to have a great managing Dr at the Mayo who did see the problem and correctly recognised my symptoms , but I would hate for you too withdraw a tool out of your arsenal because of your experience. As far as wasting money on a Trainer ; its like anything if you find a qualified one to help and advise you to set up at home you won't need them long and it will be an investment to your future. I admit I''m bias as I am trainer / gym owner , hence my impertence towards the suggestion that exercise doesn't help. You know your body better than anyone - describe your symptoms to someone who wants to help , who can develop a program around and for the "benefit " of those symptoms. I don't mean to be flippant about it . I practise what I preach -- It has saved me. On the days I can't exercise I take my time and change it up -- hence the museum walk or I just relax exercise my mind , but its my time set aside - training against this STUFF. GOOD LUCK & Slainte' Kite 7

Hi , I certainly agree with the gruelling part. It sounds like you have had some interresting , to say the least , experiences with mis DX. But don't give up on the exedrcise regimen / and nutrition as being applicable tools to lifestyle improvement.; especially for metabollic disorder. Have you researched Creatine monohydrate , Calcium ( to help with iron absorption) , even something as simple as Green & Rooi Boos Teas for hydration ,antioxdants & again real aid for Iron absorption. One of my clients actually began giving this tea to one of her Race Horses that was having an Iron absorption issue - needless - to say with the addition of calcium & the green tea supplementation the Horse saw real Imperical improvement. I think that it is the messanger not the message that you object to. We have all been treated as inferiors ( for lack of stronger less polite phrasiology) by Doctors , however , with this disease you have to listen beyond what you hear. Its not the manner in which you are being told. Needless to say , an inspiring traverse thru a museum is and can be EXERCISE if you make it your time - a regimen. Provide yourself with specific goals. Physical as well as mental. then you particpate in your treatment - GOOD DAY or TOUGH DAY We all have had them Doctors too!!! Exercise manifests itself in many forms - you chose. It doesn't have to be grueling to be effective - research it get a trainers advise. Develop a regimen that inspires you to preform - for your benefit .... not the doctors . I f for no other reason than to have a time to focus on yourself on trying to IMPROVE your health . that time each day 5 min 10 min half hour doesn't matter find the activity . that's the begining .I've seen it countless times. Good luck Kite 7

Hello All, This will be rather a short post compare to my usual long winded diatribes as we are in the midst of packin' to move cross country and this heat is killing me so don't have the time. Suffice it to say EXERCISE will ---WILL help you !!!! no IFS ANDS BUTS or OTHERWISES about it. The problem arises when it is PRESCIBED mindlessly. The regimen is what is important. The how , what , when. All of these things MUST be thought out as part of your health regimen ; as much as DRUGS , DIET , PHYSIO , ETC. the manner or approach should encompass a goal requisite to helping your condition. Increasing blood flow /volume , lean muscle mass , O2 exchange , fluid retention , managing HR & BP . These all can be aided & affected with the Proper exercise and Nutrition ( to include supplementation ) regimen. Not to mention the mental aspect involved ; the physilogical release of endorhiphin. It not about being TOUGH. anyone affected daily - dealing with these Dysautonomic Diseases are "TOUGH" mentally and physically. Its about taking action ; helping in the process of living. Its about quality of life. Nobody should expect to work beyond the limitations of their bodies ,but you also don't want to limit your body from working. Research , and start new things as exercise takes many forms - But YES there is no choice Exercise helps. Kite 7

Carmen , I echo the sentiments. We have been married for 18 years 5 Kids. During our Marriage we have enjoyed a wonderful life with the ability to make descions that have gifted us time with each other and our children. In retrospect pretty smart or just lucky. I would not Have survived without MY WIFE -- PERIOD. the strain was , at times , to much to bear ; only because we cared so deeply for each other and our family. Being Ill you feel inately selfish and hurtful , especialy when there is nothing that can be done and you are just getting worse. The strength of a PARTNER & FAMILY then becomes the power beyond anything. It is the vehicle that drives you to keep going. We realised it was not the destination but the JOURNEY - JOUR (DAY) everyday that mattered. We would use this crescendo of power daily. So now its as Somerset Maughm exclaims - each life makes its own imitation of immortality - We happen to immitate each other , thus to be a legacy unbreakable by a simple illness Slainte` Kite7

Hi Carmen, Great topic . This , I think , is a subject far beyond the reaches of what a general grasp of chronic illness is. When you sit mulling your upcoming appts. in the sterile coolness of every Doctors office with the absurd wonder of the inherent disdain for your symptoms , knowing patient # 3100035 bedside manner may not be the mantra for the day. Solice comes in the sublime. Reaching into your own strength , fears. The surperphulous control handed to these other people ; for don't they realise. can't they see. I just want to go home sit down with my kids and tell them Why the Old Man falls Down - can't talk etc. Sure they 're great ! they help pick 'em up or go get Mom. When he's on the floor , they'll get a blanket , a pillow - then just step over until he can get up. Its no problem watching movies with Dad in his room . To them he's not the guy in the sterile waiting room being poked , proded - treated to questions/ interrogations. No just the Old Man who doesn't walk like he used to maybe can't drive fancycars anymore -- But he's still Dad and they just wanted to KNOW what WAS/IS going on. We always told our kids frankly what was happenning. Because they could see it. We would try to break it down for them to terms they could then would understand. Its interesting how people will ask your children but will not ask you. So we felt it important that there were no misconceptions. Now that being said. the strenght lies in living our with this as another part. Fitting it in so to speak. we have all made adjustments. Kids espeacially. They have been stars!! Best bedside manner I've ever seen . got 5 Ages 16 , 14 , 13 twins 9 ,9 Slainte` Kite 7

Hi briar, yes my muscles do "BURN" and in several different ways in fact. The traditional manner you would expect ie lactic acid build up from the intense effort / workout of the spasms themselves , but also a thermogenic intense nerve "burn" and this can vary in intensity &duration. This I find much worse , more frustrating than the former. M y spasms / seizures/episodes also vary in duration and intensity as I stated in my last post. Thanks really to the Topamax I am more controlled I suspect from a quality of life stand point , however, I always spasm when performing structured tasks. A for instance - I can no longer drive standard efficiently for any extende period of time. When I do I can expect to have real issues as the messaging just is getting "interupted" I have found the training regimen to be highly effective !! The idea of performing stability exercises after resitance with the same muscle group is to inspire nerve / motor unit participation while the muscle group is fatigued and the area is filled with highly oxygenated blood. In theory allowing the nerves to grow or regen to new preformance levels rather than the defeciency helping both nerve messaging and muscle balance. Working with med balls , stability balls ,coreboards along with weights -resitance bands is the best way to achieve this regimen . The med balls of various sizes or body bars allow angle &leverage changes thereby strenthing the connective tissues , muscles , joints as well as allowing the motor units to perform varied , unique messaging exercise. good luck Briar hope this adds some clarity Kite 7

Hi briar, I suffer from this at varying degrees , but its certainly more horrific if I'm tired , having respitory issues ( which is most of the time) or try to control the spasm / stop it. I am on now 300 mg Topamax to help curb some of the activity but I also started to do afew things differently trying to affect change thru exercise & nutrition. Some of the things to be loking at from a nutritional standpoint are Mgnesium , Potasium , Calcium. And my personal favovourite Creatine. My opinion is that when you Spasm / seizure its like a workout for your muscles and nerves/ motor units , so it is important to replenish the fuel -Glycogen - for recovery and perhaps provide a more balanced performance of the muscle and motorunits being affected. Magnesium has a positive affect on nerve conduction - messaging to the muscles ; so this is extremly important when you are hacving conduction issues. Potasium is certainly self explanatory in its prevention of cramping .. Exercise the affected area will ballance the muscles & connective tissues to prevent injury , but also to provide a more coherent Messeging system - motor units - nerve conduction. By putting the muscles under stress similar to Spasm you can build & regulate motor units under control of repetition to provide an increase of lean muscle , capillaries ,promote nerve growth and general body balance. I use med balls , swiss balls , stability boards for this to facilitate a full body balance - a shaking if you like so that you must stabilise your whole body while preforming a given exercise ( poormans power plate). Briar , sounds like alot but really is quite simple to see change . For me its what keeps me afloat. The other thing I can recommend to you is to breathe & relax. When my body goes into severe Spasm its all I can do to stop it ; I just give in and It hurts like an SOB. I have broken ribs sitting watching movies , dislocated fingers , broken my wrists , toes ; The interesting thing is to notice what triggers the spasms . and how best to deal with them. I found not fighting , Creatine , Magnesium and for me alittle more body fat. But I still have ' em I get down right away my BP &HR don't go thru the roof always sometimes they will drop tru the floor . If you are getting them in your neck area too as you describe check for disc damage aswell some times this nerve damage can be referential to collarbone and arms to hands. GOOD LUCK Kite 7

Hello All, YEP , MADE IT !!! No small feat really all things being equal ; and of course they are not. But accepting that part is the first step. I look very much forward to each B'day know ; and it was with great anticipation that 40 came. Of course we managed to over do it and I had to spend the better part of the next 2 days in bed a relative MESS ( remind me again why I'm so glad to make it) . My wife and I spent a nice quiet day DRIVING my Car all the way into Toronto for service ( @ 1 hour drive Ended up leaving it there for 3 days) . Then we just traveled to a few different shops to pick up some things prior to Our move. At 1 mall we encountered a movie set with Micheal Douglas & Kiefer Sutherland , must say it was neat. WE lunched quietly sans kidlets or fanfare as I had been exposed to a Surprise luncheon day before. all in all a nice event filled day. The travails that lead up to this Day seem worlds apart until the affect of a seemingly normal day that we have plan in such minutia now , But be prepared to change a the drop of a hat. As I fight to maintain a normalcy to enjoy this day - knowing I'll be giving up time , It strikes me how comfortable I have become with this trade off. And the reasons for that comfort. Prior to my dx the wonder ,fear of not understanding what was happening or afflicting me was more difficult than the physical torture. I could deal with the ups /downs of the physical torments -- HECK - I would even try to figure out training regimen throughout to dealwith the pain , vomitting , fainting etc. I would work harder longer physicaly , But the META- physical was enormously hard to trade off . When answers were not forth coming or suggestions were beneath your understanding. I am , we are now coalesed around this mortality issue and each B'day come as it will ; just as each symptom manifests itself to new heights depths of condition. As it stands NOW I made it to 40 pretty much in one piece. Slainte` Kite 7

HELLO ALL, XANAX & WINE U2 Day Tripper THE Beatles Imagine John Lennon Kite 7

Hello all, I use Polar HR monitor s during exercise , and find them to be quite accurate when used properly. I also have and use regularly a BP monitor ( forget brand cost @ $ 200) that seems to fairly accurate / consistent. Generally symptoms will tell the storey but both monitors give an insight into the plot line as I journal my "STUFF" Exercise is a different animal as I believe strongly that a monitor should be used , even during resistance training. This will allow you to take advantage of creating and modifiying your regimen aruond your Dysautonomia ; as well as helping to understand the triggers of when ,how exercise responds visa vi your symptoms. It also offers piece of mind. Buying a descent one is a must 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.

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

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

Hi All, If I don't go down , I usually wait about 30 seconds 'til it goes thru the roof or both. Tendencey is to watch my veins cave in and disappear ( as I am quite vascular this is a very obivious clue - neat to watch too!! ) THEN all **** breaks loose. I know I 'm in deep trouble whne speech is affected or neck , mouth fasciltations ; that' s when sitting really isn't an option as laying becomes an imperative. BP and HR are like a F1 Race car Tachometre zoom up , zoom down. The various muscle spasming is very diffcult espeacially during Low HR / BP periods and being unable to communicate to someone trying to help. But just trying to Relax is the best thing. This stuff just kicks the s--- outta ya / me . after I tend to just try to get ready for the next one ; which depends on the Day. This heat is getting me as Iam finding it hard to regulate body temp. Little water blisters everywhere and crazy sweat pattern - sometimes drench others none at all. Go figure. But , as with you all, I do crave and try to maintain salt/ sodium intake thru fluid during &after ( the during is usually expelling fluid all over myself -drool etc.) . Mostly know its coming and try to mitigate the external effects thru diet , exercise , rest , meds etc. Do the best we can. Slainte` Kite 7 Ps actually just picked my soory butt up of the grass -- been 1 0f THOSE days CHEERS