mjan

OK I am going to try this again...geezz..lost my first response. YES...lets sing along together. I get these quarter size pains for last few years..that last many months. It was so bad my PCP thought it might be a bone tumor. The 2 rheumatologists I saw ruled out fibromyalgia after 2 neuros thought it was fibro. OK whatever the NAME is..it hurts and limits my ability to use my arms. AND.. every once in awhile I get that same neuro type pain in my BLADDER. It feels just like a UTI starting with urgency..frequency but NO infection..just the PAIN..then it goes away in about 2 days. Go figure. If I stretch..even gently...I pay for it for days and weeks with terrible sore pain..and inability to use that part of my arms etc. I was given Lyrica by the neuro who thought it was fibro..but for some reason did not like it..or didnt think it touched the pain. Good luck in finding out.. Jan

Yes I order them for our patients from a durable medical equipment store. One of the names is APP mattresss which are air mattress over lays with plastic bubble that inflate to prevent bed sores. I would imagine to have it paid for you would have to have a referral...unless you can pay for it. Our patients rent it and return it after they do not need it any longer. Jan

Your post broke my heart...HUGS!!!! At least there is hope. You MAY improve...and work again. You could use your skills perhaps to do other related work, right? Warmly, Jan

Sorry you are struggling so.. I know picking any MD is so important. I switched jobs AND insurances. I had to start all over just while I was in the misdt of being diagnosed and undiagnosed with MR..Cataplexty and all the POTS symptoms..NO ONE knew what to do with. I said a Prayer and asked for spiritual guidance.. in the name of my beloved mom and any and all who could direct me. Guess what? My NEW PCP not only knew about POTS ..her own mother had it and understood the delimma of no one knowing how to treat her..so she got me to a ANS doc. AND I have had great PAs who got me into the best specialists Trust.. prayer.. and guidance but oh yeah.. SOME MDs=Medical Deity The BEST to you in your search Jan

Sweetie.. I am sooo sorry for you !! DANG!! Tylenol and other meds with acetameniphine sp? is BAD for your liver. I just wonder if your LIVER cannot metabolize ANY meds..but esp with Acetamenaphine. I liver DETOX..they can take blood work to see if you liver enzymes are too high. When I over did the meds with a BAD toothache..I get loopy.. lost periods of time..spacing out.. only to find out my liver enzymes were way off the chart. Good luck sweetie...I am praying for you Jan

OK.. didn't know bout your pacemaker. But look into Lhermette's ok?

There is a symptom called Lhermette's which is electrical zaps when you put your head down toward your chest. Anything like that? Would your PCP order an MRI?? I never heard of this with seizure activity..but ya never know. Jan

Don't forget...MD = MEDICAL DEITY !! Well..for some anyway. Some just want the complications or competition..whichever..of several docs seeing you. I am seeing 3 specialists and they are ALL trying really really hard to figure me out. (good luck there) I appreciate their expertise and for the 4 before them..they are all trying. BUT I like that maybe...just maybe they are ALL right..ok. Well..then did they all run the same kinds of tests and get ALL different answers? Oh man..good luck.. keep us posted..and trust YOURSELF.. A little spiritual faith in guiding you to the BEST MD for you..would be nice. Let us know. Warmly, Jan

WHOOHOOOO!!!! FINALLY!!! Boy do I know how important that is. Did NOT know about your boyfriend..glad it has not spread. Hopefully he is building UP his nutrition..as meds..trauma..surgery is sooo hard on one's body. Look at my signature...glad to know your life is turning around for you!! YOU have been sooo good to us here. Hugs... Jan

You type with your head down? Man that makes me soo sad...{{{HUGS}}} YOu sound so toxic. YES I remember when I would have to leave work after trying to take short "power" naps to go on. I was so fatigued I could not longer hold my head up. I went to the amazing nutritionist..remember? He DETOXED me safely (mercury alone over 2 times) and BUILT UP my system. Its almost like whatever you eat/breathe/drink is soooo toxic it INFLAMMES every cell. !! INFLAMMATION HURTS!!! ANd it messes Up our BRAINS and its functioning BIG TIME. IT just makes everything WORSE. When I simply STRETCH now.. my arm/shoulders hurts for days ..weeks..months..JUST FROM STRETCHING over my head etc. I cannot afford this nutritionist right now as I am still seeing specialists (3) and need to pay for their eval/testing. Gee Suzy I wish you could get a specialized eval like I did..you'd be amazed as to what they find and how they can eliminate so much inflammation/toxins. You know I am here for you. Jan

WOW Maxine I am very interested in your case and how you are doing ok? Next time ASK the tech or anyone else to HElP YOU up.. ok? You have a complicated case..but look at my signature..and I'll pray for YOUR miracle!!! Gentle hugs and healing energy to you !!...Jan

thanks for the advice, i did have a endoscope several months ago which they said was OK, said i had smal hiatal hernia but thats it. So.. what are they going to do with your problem? Did you have a carotid ultrasound? Who is treating you..I mean what kind of MD? SOMETHING is wrong..obviously..it may be invisible to the eye..hence the "normal" endoscope. I am also going to have this thingy stint placed in my esophagus to measue if and how much acid reflux I may have Let me know ..K? What else is going on with you? Jan

{{{{ HUGS TO CORDELIA }}}} At least HERE you'll find folks that DO understand..after all...we can ONLY take so much of this. Lots of support here..hang in there. But JANA you do rock !! I have stopped going to the ER. They mean well.. or...well..they can be MEAN!! Their job is to stop a crisis...save lives..treat..well..until they cannot. Because they do not know how. Like many MDs...they can test..evaluate and prescribe. Yes it would so much to have a test or NAME to this monster that rules our very lives it seems. The ONLY reason I even got referred and tested for autonomic problems is because my PCP's own mother went through 20 years of these symptoms !!! Lucky me. So many specialists...good intentions but seems to me their professional egos are shaken when they do not know what it IS or what to give you to treat it. So..many MDs put it back on the patient and BLAME them. At least we have each other. Hang in there with us.. whine and vent all you want ok hon? Warmly Jan

This is a question I am going to ask the autonomic doc in July. I dont want to take a pill every time I get tachy...thinking is that the drug affects more then the symptom is prescribed for..and I am drug sensitive. But was wondering if being tachy for many years...or with high high HR damaging in the long run? Thanks for your responses..Jan

WOW.. YOU are amazing!! How did you learn all this? Thanks so much. I am struggling to understand it all..but I will try

Sorry that you are going through this. Have you seen a doctor about it? Sounds like you need an eval..MRI..and/or swallowing evaluation where they view you eating and swallowing. Its not bad. Try to remain calm. I know.. I get the same only I do not make much saliva and take a pill to help me make saliva. Stay in touch...I am about to have a Endoscopic eval..tube down your throat to stomach thingy...then maybe an ENT to view my vocal chords. I do have lesions on the brain/brain stem Good luck in finding help Jan

Thanks for your response. I dont seem to have any cardiac symptoms is why I am questioning having to go through a horribe experience again. Do these technicians know that it CAUSES POTS symptoms to have this done? The neurologist who DX POTS was recommending it if I had not had one..but when I told my PCP my very thorough work up in last few years with NO cardiac symptoms she agreed it was not necessary to repeat as much as to find out what treatment I need for my POTS symptoms. She is happy that taking Clonidine PRN has been very helpful and does not raise my BP. Jan

Thanks Janie for your 2 cents are worth a million to ME!! I am still getting diagnosed by my multiple problems=multple specialists. So far my PCP..God Bless her..knew enough to send me to this neurologist who specializes in autonomic disorders. It was HER persistence that got me another appt for follow up. But I have other problems that may or may not be related. I do think I have some kind of nerve damage or neuroptathy. I do have brain lesions and some on my brain stem. Thanks again Jan

Thanks for responding..hmmm.. This is where I get confused and NEED to talk to this doc to explain my autonomic testing results with me. I have had uncontrolled HYPER tension..and when I get tachy.. my BP usually goes UP..high then higher..then comes down as I rest. I do not know about blood pooling or low blood volume. Have no clue. I do not know about my hands and fees when I am symptomatic. Most they are ok..but I have carpal tunnel and they go numb often or one hand may become ice cold.My feet are warm..but sometimes go icy cold. Who knows?? I was told my autonomic results were in the mild end BUT I do not sweat now and that is why I cannot tolerate the heat. All I know is that my symptoms are increasing over the years..but come in clusters..but with daily symptoms complicated by other conditions I seem to have. Whew.. this is all so confusing.. HISTORY OF SYMPTOMS: unexplained tachacardia..usually at rest..sitting followed byelevated HIGH BP/HR blurred vision sometimes with tunnel vision often with above symptoms sudden weakness..lightheaded..feeling syncope but do not faint..rather I go limp..unresponsive..but can HEAR but not always. Sometimes have seizure like tremors through out my body..can HEAR..but look unresponsive. ALWAYS starts with tachycardia. uncontrolled hypertension history..beta blocker helps now seems to make BP worse..usually around 130/85 to 194/110 then will drop down to 120/70 heart rate is usually in 60-70s then up to 90s even on BETA blocker..but used to get to around 120 at rest. (not standing) Very little ability to sweat now..HEAT makes me sick instantly..tachy..nauseated..lightheaded DRY eyes..mouth..ears. (sicca syndrome)...and now they think esophagus short periods where I lose memory for seconds to a minute but look alert..still geting a DX for what that really is. With these episodes I lose muscle control..cannot keep eyes open..look unreponsive..but can HEAR just cannot remain alert or to keep eyes open..or move my body..again always starts with TACHY/BP esculating Trouble with swallowing..about to have an ENDOSCOPIC eval daily spasticity in legs and back muscles..spasms in my rib cage 2 hernias..hiatal and umbilical asthma like coughing..chronic..but lungs usually clear Chronic fatigue .. work then rest rest rest and MUSCLE fatigue and WEAKNESS often with chronic pain Internal tremors..even inside MY HEAD tingling..buzzing electric like pain in legs multiple lesions in the brain..MS was just ruled out. Cognitive and speech problems. Good nutrition program has corrected my balance issue and helped to decrease these "episodes" BUT I am 60.. and this is soooo CHRONIC!! ENOUGH!!!

Hi Jana!! I I were having any cardiac problems I would def go get these tests done. My BP has been good..no Shortness of breath..actually feeling good for a change. Even my PCP agrees. Its more like pressure coming from autonomic stuff in my chest up to my neck. If I were dizzy..had SOB or ANY symptoms I would go. I just hate to get tortured for nothing. AND I have always past stress tests. Yes I had an angioplasty and was CLEAN..no stints..nada. Just wondering if it could be autonomic issues. Jan

OK 2 new docs have suggested a cardiac work up.. stress test and carotid ultra sound. Had the full gamet 3-4 years ago and they could SEE how bad I got on the treadmill..turning RED..head ready to bURST...TACHY.. weak.. WANNA DIE !!!! Get the picture? I PASSED it too.. go figure.. told I was just out of shape. So.. why would I go through that again? It was awful. I am having carotid pressure on left side nearly daily. AND the meds I was put on for acid reflux (I have no heartburn or symptoms I can tell) may not be helping. The last doc for my endoscopy eval for swallowing difficulties and the Auto dys neurologist are suggesting a acardiac work up again. My PCP thinks I seem stable enough that she is not as concerned and thinks it could the be auto problems. HER mother has POTS..aren't I lucky!!! I have no other cardiac symptoms..had the full blown work up including a catherization eval and I was CLEAN.. my carotids were CLEAN too. I still get the same carotid ..neck and chest pressure. And after the "little" walk where my neck felt like it was going to burst and the tachy symptoms were prounonced.. I went back to rest. What should I do.. who should I see?? Thanks Jan

OK... I have had 2 TT tests and the first cardiologist said it was positive BUT..added that my BP first skyrockets then drops...HR went up..not sure how much..high enough to be pos TTT. I had that drug they give you that induces the symptoms..then all the terrible symptoms plus near syncope. I DO NOT faint...just feel like I will lose consciousness and get soo weak that I cannot stand or sit up any more. But this is only when its really bad. I was finally put on a beta blocker...but it does not control the tachy/BP symptoms. OK.. had the Autonomic testing by a specialist who confirms I have an autonomic disorder then he never sees me again.. tells me to use clonidine but does not call in the RX wants the PCP to do it and to use salt..drink lots of water via his RN. Salt? When I have uncontrolled hypertension? He lowered my beta blocker and my hypertension tends to be better now. I was glad to FINALLY have a diagnosis for all the years of not knowing and sooo many ER visits with no help. OK..finally my PCP gets a hold of this neurologist/autonomic specialist for not following me..and he sets up a f/u appt in July (testing was early feb09) But this is what happens.. I get tachy SITTING..usually when I am at rest..or shortly after eating. My HR does not go up on standing or it takes awhile to climb up if I stand. AND now the hardest part is getting in the heat...esp in my car. INSTANTLY get tachy.. sick to my stomach..weak..you know the drill. I BLAST the AC and start to imrpove but sometimes it takes awhile. I dont usually take the Clonidine unless the symptoms get really bad and won't dissapate on its own. What should I ask the autonomic specialist in July? What kinds of things should I know rom him. What kind of autonomic disorder do I have? Thanks for your help Jan

Good to hear from YOU Rene~! I too have been checking to see how you are doing. Were you taking the Clonidine every day..all day long? I only use it as a PRN though told it can raise BP I should watch the BP. Its been fine and only needed it a few times anyway. I think if I had to take it ALL the time..I would be reacting more..like you. Your symptoms warrant that you take it every day then? Sorry about your reaction...dang. Warmly Jan

Thanks ajw4055... He said his training was at the CLEVELAND clinic...isnt that pretty famous for autonomic testing/treatments?? Jan

Hello my Dear... His name is Woodsuk Park...he is Korean and although I will give anyone a chance and am NOT prejudice I worry about the language barrier. Well...his English was better than mine at times! He works out of the Racine All Saints (where he does the testing) and I saw him at the Wheaton Franciscan FRANKLIN hosp outpatient part. Like the sleep studdy doc they are VERY excited to find out what is wrong.. and will keep trying..rather than ignore you or make up somehthing. I was MOST impressed with his bedside manner and told him. He thanked me and said the feedback meant a lot to him. He even will refer me to an ENT guy if I need my larynix evaluated too. How are yOU??? Jan