mjan

Yes Julie.. what else do they do? You have a chronic illness..and meds will be the treament. I DO see an amazing nutritionist who has this unbelieveable tool that measures our electrical system via autonomics. He has been trying to BUILD UP my systems.. with whole foods that are ground into tablets. These foods are much needed to help with any area your brain or body systems need to be helped.. detoxed from heavy chemicals..or reduce inflammation which causes many of our symtpoms. He cannot diaganose or CURE in any form..but man has he helped.. alot. I just dont seem to sustain these improvements but I would have been much much worse if I had not had this nutritional program. In fact my last 2 neuros have told me to return to him as they could observe the difference once I did. Lets stay in touch.. compare experiences if you do not mind..do you? I don't want to intrude. What are YOUR symptoms?? My newest are vision..focus problems. AND even on my beta blocker I am getting breakthrough symptoms..tacky..high BP..keeps going higher and higher than before. I have muscle problems for years..and pain issues. MOST are manageable. But when I SPACE out.. I cannot work. Stay in touch.. Warmly, Jan

HI Suzy!! YES at first I had a hard time getting UP to the 40..then sustaining it. It seemed to finally get up to 40 and it deflected then rather quickly. When he told me he needed a good 10 secs to measure.. I really really tried!! Did your tech.. yell and cheerlead you on?? and ON??? LOL.. Well maybe the fact that you could not even DO the test will tell them something. Let me know ok? Jan

YEAH I wondered what it will show. I DID NOT seem to sweat..for a long time in the hot room. But what a mess to clean up. ~!!! Yes he suspects I have Sjogrens too. Heard that the lip biopsy is not a reliable test and it can leave your numb. Did you have that lip biopsy yet? BUT I noticed that even tho I was not sweating much or at all my EYES and MOUTH got moist!! I have to take a pill for saliva..my mouth is so dry..and Restatsis for my SEVERE dry eyes. I also have Dry EARS.. go figure. BUt its a source of infection as I do not produce enough wax. Lets keep in touch Jan

OK..I get a great new neuro ...the ONLY one in Wisconsin with an autonomic testing lab. Plan to argue that point with my insurance as he will end up costing me more..anyway.. He orders these autonomic tests. I HAD a TTT before by a cardio/physio kind of MD. IT was postitive. BUT today I a different version. THey dont use that med that accentuate your auto symptoms. This they hooked me up to a computer where you finger AND your arm were constantly recording you BP/HR. Then he had me blow into this device and try to stay 10 secs with the dial around 40. That was a little like blowing out your brains..but not that bad. Then he tilted you to 60 degrees. NOw I got my symptoms but I came INTO the test with dizziness...headache..had to stay there around 15 mins. Its not pleasant.. and I was afraid that I would get WORSE symptoms cuz being off my beta blocker was already causing me such high BP/HR and dizziness. But.. I survived. Next was a QSART test.. any one know about this?? ITs a provoked sweat test where they wrap these devices around your foot..leg..arm.. this device that holds Catecholine sp? and then its pressed into you with this little electrical current. It measures your sweat the size of an eraser he said..with that C chemical. What is THAT for?? Next is the FUN part!! The TST or thermoregulatory sweat test..where you wear this horrible paper 2 piece bathing suit..and lay on a comfy table in a very warm room. THey keep taking your temperature until it reaches a certain point.. or.. as he told me.. you cannot stand the HEAT LOL any longer. OH but first they dust you with the die..its light orange but then turns deep purple where you sweat. Its a STAIN that takes a lot of scrubbing and several days to weeks to finally get it off your skin. OH.. did I mention that they TAKE PICTURES of where you are purple???? So cute.. Ok.. the tech keeps coming in to check on me..take my temp..but noticed I was not turning purple.. (not sweating yet). Came in again.. and again.. still not sweating. It took nearly the whole test or when I reached that correct temp before I started turning purple. Its a MESS to shower and get off..but they give you lots of times..towels.. etc. So.. who knows about this .. what does the neuro learn from the results?? Thanks, Jan

OH.. and your labs suggest an autonomic problem for sure.. but they need first to rule OUT a malignancy. I hate when they say that without knowing for sure. It sure is scaring to HEAR. I know. I looked up the DX that my new autonomic neuro wrote on my labs.. and he put on a preliminary or working DX that gets rule OUT (or in). I panicked a little at first until I realized that was so insurance would pay for the need for this particular lab.. Does that help?? Whats GOOD is that they DO RECOGNIZE that you are having OBSERVABLE..documented problems.. you are on your way to a diagnosis for sure!! Jan

OK ok..relax as they are GIVING you clinical..observed EVIDENCE that something IS Wrong my dear!!! This is when BAD is good !! or Confirmation that you cannot maintain your balance without someone needed to catch you..so you dont fall.. AND.. you have an unusual stance and GAIT..its NOT just a psychiatric kind of walk...that is ONLY one kind of explanation..but NOT in YOUR case its due to a neurologial disturbance..see? Hang in there.. the TRUTH is now revealing itself!! Warmly Jan

HI Suzy~! I cannot tell you how much we ALL suffer in this country due to CHEMICALS CHEMICALS CHEMICALS~!! They are in EVERYTHING or put INside good foods..like hormones in chicken etc..bigger is better. We BREATHE chemicals.. I am 60 and I did not grow up with so many foods with preservatives and chemicals..after all..they have learned we do not decompose once dead as fast due to all the preservatives in our foods. I live in Milwaukee WI. I swore off docs last year for awhile.. just tired of the diagnosie ring aroung. But I have been lucky of late..getting really good neuros who were really trying to figure me out.. and my case IS COMPLEX~! But when I found this specilized NUTRITIONIST that tests using NRT by reading the autonomic energy in the body.. after all our BODIES do talk to us!! IF you know how to read it. Many many docs have limited abilities or tools and depend on only what they know.. how they were trained.. no matter what thei title says. After all I saw 2 Rheumies in a few months.. and both had different opninions.. I had 2 neuros in the SAME OFFICE and they tend to specialize..so they have good training but its LIMITED...not an answer for EVERYONE..ok? Both had totally different DXs. In spite of my guru of a nutritionist.. it does not solve EVERYTHING. AND I must do my part and not eat junk..sugar..or preservatives. AS far at the FLU shot.. and vaccines..its what is IN IT that some of us react to. .. the preservatives..only to find out that people who get the shot..are not protected against all viruses. So.. I do not risk that. My grandson had to be detoxed from the vaccines he got as a baby.. cuz he could not talk. After a long detox he was able to speak again. I have been detoxed from mercury 2 times in just a few years. Its in so many things now. Well.. thats MY point of view.. and I am living proof!! Take care.. and please.. please.. stay in touch. I will have my testing done next Friday 2/6/09 Warmly Jan

HUGS.. HUGS.. and much understanding to you from me~! Dang these docs. YES they cannot absorb the WHOLE story.. no matter what. But think of this.. can you imagine what that Resident learned from that MD??? What to DO.. and NOT do??? Oh.. did I tell you what MD means? MD = MEDICAL DEITY.. Yup. But one day they TOO will be patients.. hmmm.. think of that!!! I too get caught off guard.. stutter..stammer or shut down when "talked down to"..but have had better experiences with MDs. I always write down a FEW questions or points I want to cover.. simple..without much detail. I let THEM ask for details. Yes it makes sense to have someone with you.. another MAN helps..sorry but its true. But I tend to just forget after awhile and miss important things sometimes. Whatever MAST is and caused by (I did look it up...it has so many symptoms etc). BUT this is what I did after multiple MDs/Specialists. I found this most amazing specialized Nutritionist. He has a specilized evaluation tool NRT or ART ( nutritional response testing.. or Autonomic response testing) to see where you are TOXIC..DEFICIENT..and ALLERGIC to. I am way too sensitive to meds as well. Sometimes I end up in the ER as a result. Then his program BUILDS up your system..he detoxes the many chemicals that are going awry..causing many symptoms ..esp Neuro ones..either from the foods and beverages we eat/drink.. from toxins we breathe in.. and coupled with our predisposed factors.. make DIS-ease. All I know is that he can make me feel better..stop inflammation on brain cells.. systems and nerve bundles..improve my health. And the nutritional program and treatments do not interfere with medications.. in fact.. because they are whole foods in tablet form..he can help with side effects if meds are causing them. He's sooo good that my last 2 nueuros told me to see HIM when I had flare ups.. yup. He cannot diagnose or cure..but man can he make things better. Best to you.. you have OUR SUPPORT ok hon?? Warmly Jan

Here I am so concerned.. wish I WAS the MD who could treat your problem !! What did the Brain MRi show? Being on the MS forum thinking for 4 years that I had MS till they ruled it out..swallowing difficulties CAN be caused by the msucles not remembering how to work.. not getting the right connection from the brain .. to the esophagus not working properly either. Acid reflex makes this worse and worse.. so does the brain interferrence. All I know is that I saw my guro of a nutritionist and it got easier.. I stopped choking and gagging every time I tried to eat. There is a technique you may want to google..where you put your chin down to make the muscles/nerves cooperate when swallowing. Also to keep food at small amts when eating. My swallowing test they could SEE my mouth..throat.. esophagus and see how many times it took me to get the food down. So in my case I think.. it was a combo of the acid reflux problems.. and my esophagus not working properly. Stay in touch.. and know that you are not alone k? Jan P.S. this is my 1st day on this forum

Hello dear Babette~! So very sorry for ALL you are going through. Makes me more grateful. I too have had that kind of pressure.. in my chest.. and around my carotid. I end up in the ER.. and then dismissed.. But.. once when they admitted me.. thinking I had a stroke.. the PT gal I think is the one who recommended I get a swallowing test. Turns out I have GERD or acid reflux so bad it comes up to my collar bone. I had no idea as I do not get heartburn. Instead I get this pressure and tightness.. then cough and choke when trying to eat. So I present as if I am having a heart attack or stroke and its neither. I also "forget" to swallow and walk around for a few seconds or son with water in my mouth. I had had the carotid ultrasound.. which was normal. Heart.. normal. So they just put up their hands.. and let you go as a patient. NO ONE ELSE did anything about it though. I just report it. I see a nutritionist who treated the GERD and other symptoms and its better. Now I notice I can swallow ok but it goes down too slowly through the esophagus and seems trapped. Something else to explore. It IS serious.. can choke.. aspirate to your lungs. ASK your doctor to do something about it.. ok hon?? It does sound more neruo than acid reflux but remember your digestive track is affected by the autnomic stuff too. Have you had a brain MRI too?? And come here.. for hugs and support. Warmly Jan

Thanks Jennifer.. you are the FIRST and it means a lot..best to you~! But I am about to have the 3 hour AN testing.. what should I expect? Its the autonomic sweat test.. what should I expect? What if I do not sweat? Just had the urine and blood tests so far. Thanks Jan

Hello all~! Been on different forums.. made good friends.. know what its like NOT to be diagnosed.. dismissed..told to see a psychiatrist...but.. thankfully also have had a lot of docs TRYING to figure it out. Still trying to work..but again.. its getting harder and harder. WINTER is the hardest on me. However, my new PCP.. God bless her.. referred me to the neuroloigst HER mother sees. He specializes in autonomic and neuro muscular disorders. He has no big EGO and welcomes my input. He read all my records prior to my visit..apolgized for being late.. late? maybe 5-7 mins. He heard me tell of my medical experiences..symptoms..and agreed that I have an autonomic problem. He said if we both agree I dont have to run a lot of tests to prove it then..but wants to measure it. In past 8 years.. I was told I had TIAs..saw lesions on the brain. then with balance problems..with many neuro symptoms..sent to MS neuro. Now MS ruled out. He also thinks I have an autoimmune disease..probably Sjogrens. I HAD that DX by first Rheumy but the next rheumy said no..cuz labs were neg.I have SEVERE dry eyes.. mouth and ears. HE also thinks I have basilar migraines..causing the lesions on my brain esp on the brain stem/pons area. I just started headaches nearly daily with dizziness..nausea..vision problems. He also thinks I may have narcoplespy with cataplexy. I dont drop suddenly but eventually cannot move my arms..legs or remain alert..but can HEAR. My HR/BP usually race and go high.. then eventually drop into the normal to low range. The recovery from these attacks last for hours..I am left weak. He's willing to give me a try. I WAS DX with MS for awhile..then it was ruled out.. in.. then out for sure. I WAS DX with possibly seizures..then ruled out.. and narcolepsy as a possibility. I WAS DX with fibromyalgia by 2 neuros .. then ruled out by 2 Rheumies.. I have all the "hot points".. pain sometimes. Who knows.. Epstine Barr sp?.. Fibromyalgia.. chronic fatigue.. So.. may I ask all your lovely folks here to help me with questions..testing especially..what is the normal kinds of tests ?? I had TTT and it was positive. I also have neuro muscular problems.. tingling..buzzing.. tremors..even shaking INSIDE my HEAD sometimes when I am sleeping. VISION problems.. blurriness..to focus problems.. it usually happens when I get tachy and HR/BP skyrocket. My BP usually goes UP UP UP..then crashes down.. and leave me wiped out. IT usually never gets really low..just withint normal range after being in the 190s/110 ish. Been on a BETA BLOCKER which has helped some..he asked me now to take in in half.. one half in AM.. the other in PM. Thanks for replying.. or reading this post. I am sorry for ALL you have been through.. I will support you too ~!!! Warmly Jan