mjan

Oh my dear... {{{{ HUGS }}}} I am sorry you are struggling so. I do not know what to tell you. If it were me...I would see my divine chiro who does NOT crack your bones..rather..uses one finger..and then an alternating finger sometimes..to UNBLOCK the nerve pathways...and give one relief!! He corrected my lower back after 20 years and near surgery. But you'd have to find a chiro trained in B.E.S.T techique. Its painless..simple...and it allows your brain's electrical energy to correct what is sublaxted or pinched. Just know that I am thinking of you and I care.. Warmly, Jan

OH.. I meant to say I POINTED in the YELLOW PAGES with my EYES closed and found this amazing doc..

{{{{ MAXINE }}}} I am so sorry you are struggling so. Yes its hard to find the right docs..and a neurologist even harder. I dont think they are getting training in this kind of work. BUT>>> I wanted to tell you how ADORABLE your granddaughters truly are...like I HAVE to tell YOU!! I once found this amazing doc.. a chiropractor who uses a finger..along the nerve pathways.. gentle..gently unblocking the nerve bundles to allow the brain to do its thing in healing. Anyway..my point is.. I said a prayer to be guided spiritually to the right doc just for ME and what I was going through..closed my eyes.. and POINTED...finding this miracle man. He corrected my lower spind when even the neurosurgeon would not touch me. Just thought I was ADD that ...PRAY.. ask for what you need.. and watch and see...ya never know. Jan

Not to worry you Chrissy..but this sounds more serious than Asthma..tho thats bad enough. How do you know you have fluid in your lungs? You need an URGENT care visit by some kind of MD until you can see the pulmonologist. Tell them you are having SOB or shortness of breath..chest/lung discomfort.. anything along those lines will get you in sooner than 09/02. Regarding the "mass" the ER found..they are looking hard for stuff to make sense of why you are there. They may be right..but then why didn't anyone follow up? Good luck...keep us posted. Warmly Jan

AAAwwwwhhhh.. Give your hubby a HUG for me k? And God bless ya for ALL that you do.. how sweet. Thanks for posting this response. Jan

First of all..I am truly sorry you are struggling so. {{{HUGS}}} But when I was THAT bad.. I finally had to take a medical leave and was introduced to this amazing nutritionist. NOT your typical one..but one of a very few that have this evaluation tool that can determine where we are toxic..what exactly is toxic..or well deplenished ..and builds you UP UP UP. He cannot cure..but oh can he make things better. Its WhOLE FOODS..organically grown.. into tablet forms.. just EXACTLY what YOU need for your brain/system to heal and improve. For example.. if you need a certain vitamin or nutrient.. you may not need if ALL the time every day like when we take vitamins. He is THAT EXACT..and tests you when you dont need it any more. I got my strength back.. I could work again.. I could THINK again.. I could REMEMBER again.. Its not a cure..but its such an improvement...I struggle..not as badly as you and others..but its a GREAT imrprovement. You would need to research someone who is trained in NRT or Nutritional response testing..using the autonomic system. He can even evaluate your meds.. and recommend things to counteract the side effects. Its amazing.. that my neurologist at that time..could not believe he helped improve my balance..brain fog.. etc. It was worth it all to me. Just wish docs would know about this more.. some chiropractors are trained in this system too. Anyway.. my 2 cents..and its paid off. Jan

NO you have helped. I wish I had known this long time ago. My husband had seizures and when I woke up from a sound sleep to shaking ...thinking it was HIM. It was still.ok.. so go back to sleep. Then.. it happens again. Many doctors later ...they think I DO have seizures.. So.. now I just dont care. Its more when I am stressed anyway.. thanks for your response Jan

HUGS to you and yours Janey!! OK...nearly ALL of us cannot "keep up"..much less get it all done. I pace myself and try not to feel guilty.. VERY IMPORTANT. I am alone now. My husband was disabled but able bodied..he had seizures. He helped..just pitched in without asking most of the time. His mother kept a spotless house with 5 kids raised mostly by herself. So...sets the standards. Have you ever discussed what would happen if the situation was reversed ? What is HE got a broken leg..or had to rehab from some kind of illness/injury..how much would he help then? What if it meant he were bed bound..then what percent could he contribute..$$ and with housechores?? 50=50 is a great IdEAL..but not a reality each and every day. Its a good goal...so compliment him on his standards. BUT...if it were ME.. I would help provide the education on YOUR disease process..so he is prepared. Maybe see the MD together. THEN...ask him to help you solve these issues..once clearly defined I mean. For example..could you SIT and sweep..sit while putting dishes in dishwasher...or fold laundry..and PACE yourself?? Like..if I put a few dishes in DW..I will get it done by such and such a time.( if that is reasonable) Or something like that. BUT as I see this.. the bottom line is the conflict between his wonderful..well meaning ideals..and standards and well.. keeping YOU in his life. Its not about you losing him.. rather his keeping YOU!! AND.. how much he is willing to sacrifice for YOU. I took care of a lot..like handling money.. insurance.. appts working full time while caring for my husband because my husband had brain damage from a long seizure..losing his ability to keep his job eventually. So.. we reversed the standard we grew up with .. I WAS THE BREAD WINNER.. he was "becky homecky".. I complimented and thanked him lots.. and lots.. cuz I DID appreciate all he did. BUT..back then NOT knowing I was sick..getting weaker.. and sicker.. he just could not understand and the stressed caused me to start falling apart. If I was going to keep the medical insurance I had to work.. BUT.. only if I could rest most of the off time. His idea.. a good one.. was I just needed to EXERCISE. But not if your exercise intolerant plus other disorders I had. YOU may need to stand up for yourself with your health limitations. A third party helps. Try going to a therapist by yourself first. Sometimes they just help you cope.. validate your experiences and help figure things out (I know I WAS a psychotherapist). Then.. later you can invite HIM to one or two of your sessions for support. That way its not about HIM.. but YOU (and him indirectly) and learn together how to help figure this out for YOU as a couple. Most guys run from thought of therapy. Again.. Identify what the problems/issues are (his may be different than yours). And be CLEAR about it. Ask him what he thinks your issues are.. and you explain what you think are his issues. Ask for his help in solving these identified issues.. problem solve. Try something for a short while to see if it works.. on a short term basis so you are not "locked in".. and take a break. Then re-evaluate the situation (like how well you did taking your TIME.. pacing yourself with housework... and his adjusting to a 70-30 situation at times etc). LOVE takes work.. and all folks in relationships carry their own set of standards..ideals..but your reality together defines what is important and hopefully allows you to be fluid in adusting to what your priorities are. Good luck.. my thoughts and prayers are with you... Jan

What happened? Did you get sick..weak? Do you know WHERE it is located?? And how long does it run?? AFter an hour.. I'll be exhausted..I think..though its my shorter day now..maybe not. Maybe..just maybe WE can meet up sometime..if you care to..no intrusion..

Yes I have been dealing with HOW to eat properly too for many years. This time its different. I either CANNOT swallow at all..or it hurts like a razor going down...even soft foods.. Now if I only shut my mouth sometimes.. LOL

WOW!! Of course you are their role model..right? AND.. its just a safe way to eat in general. WE Americans needs shovels sometimes for the way we eat at times. Just kiddin.. Thanks for your response. I was wondering if its related to the lesions on my brain stem...hmmm or something else.

Thanks for responding. I know its not a big deal..have had it for years. But just wondering if its more from Autonomic stuff then my other problems. Just trying to figure out what is from what. I was seeing an MS doc and thought it was related to MS. I guess with any neurological or autoimmune condition.. many overlap. Also.. when I have TERRIBLE muscle fatigue that comes on suddenly and feels like my arms/legs weigh a ton...could that be a chemical problem?? Is that treatable? I am ony on Clonidine when I get tachy. Once I am done with all the testing I am going through (with other conditions) I will return to my nutritionist. He is amazing.. can tell if i am toxic.. or missing a nutrient and he builds up my system. He has an unbelievable evaluation tool...and can "test" your meds to see if they are making things worse..like side effects..and compliment the med so your system works more efficiently. Thanks for all responses...Jan

What I mean is I can get internal tremors...you cannot SEE them..but I can FEEL them. Told one nuerologists and he answered.. "Well I believe that YOU believe you have internal tremors." When I told the POTS doc he said to me.. "I bet people make you believe you are crazy.. well.. you are not crazy." He DOES know and believe in internal tremors. I even get him when I lay down on my side..my head shakes INSIDE only.. and wakes me up..go figure. He says its autonomic related..hmm..but why? What the heck is going on. I am NEW to all of this. So.. sometimes my abdominal muscles just move up and down ..sometimes reminds me of when I was pregnant. Yesterday my right arm just had tremors for a few mins then stopped. Or a finger will shake. Anyone else? IS this autonomic related..like a chemical reaction..or lack of a chemical..or what? IS there anything to do for it? I never know which doc to tell this stuff too. My dysautonomic doc is not going to follow me per se..but remain as a consultant to the other docs...unless something major changes with my condition. Thanks...Jan

Hello !! Sorry you are going through such troubles. What kind of swallowing test? The barium/eat/watch your swallow on video kind? That is the one they said I had a hiatal hernia AND GERD all the way up to my collar bone. When I see the GI doc he says when you are eating it can look like a hiatal hernia but its not really. SO I find out I do not have hernia AND GERD. LEt me know how your test goes. I had no problem with the test..but swallowing was a bit of a struggle then. I would cough and choke almost every time I ate if I didnt have something to drink to wash it down. AND there is brain involvement I THINK. For when I take a sip of water.. I "forget" to swallow! If its cold enough or something hot I do not. Go figure Let us know how all your tests/evals turn out ok? Jan

OK.. I wake up sometimes and cannot swallow at all. I choke when trying to swallow sometimes.. food goes down too slowly and uncomfortably. So.. get an endoscopic eval..attached the BRAVO device to wear for 3 days =NO ACID REFLUX Since that endoscopic tube was used.. my esophagus has been WORSE!! Food going down oh so slowly and painfully. I think its just sore from the biopsies and that attached Bravo. So.. GI RN calls to say not only did I have Gastritis (probably due to the years of Ibroprofin..but.. I have an inflammed esophagus. OK.. its not acid refux thenwhat is it? OFF of Ibroprofin forever!! BUT I have Sicca syndrome or undx Sjorgren's (autoimmune disease)=very dry eyes..EARs..yup..mouth I take a PILL to have saliva and now they think I am lacking lubrication in my throat/esophagus. Is this autonomic related?? OR.. more the Sjogren/Sicca syndrome ?? I can ONLY eat soft foods..I have discomfort even when I do not eat. Could it be esophageal spasms?? I am going to be tested ASAP by having this tube down my nose/throat..I swallow water as they pull it up slowly to measure how my esophageal/sphinter muscle are working..GEEZ Jan

Hiya Brye!! I think its the 1st Wed of the Month. I will call and find out for sure..and where. Hope you CAN make it too..wooo weee!!

OK..got my work schedule changed on Wednesdays and now I finish work at 5pm (supposedly). Wanna try the support group held at Froedtert hospital.. (I think its there) Anyone ever go? Do you know EXACTLY where it is held? Let me know... or PM/Email me k? Thanks Jan

Your sister needs to be carefu....what goes around..comes around=KARMA!! Yes in your head you know she's a nut job.. (and probably jealous of not getting the attention). But in your heart that stinks..its hurts plain and simple. WE love you..lots my dear Erika!!!! Sending you healing vibes with the wonderulness that is YOU!!! Thanks for being here for Us...may THAT goodness and good will come back to YOU=KARMA!!! Warmly..with hugs.. Jan

WOWEEEE~YEAH!!!! I KNOW how challenging that is..are you the one with the psychology counseling degree? You go girl!!! Jan

{{{ SUZY }}}} Sending you a gentle hug...and to remember.. to USE your faith.. your belief in God..whatever. YOU WILL BE GUIDED...trust this knowledge ok? I know its been hard due to your past..I will pray too..and wait and see.. YOUR MIRACLE WILL BE coming your way Warmly Jan

Hello ladies!! So this Dr Heffez is in Milwaukee?? I AM IN MILWAUKEE!!..WELCOME!! Where is his office? Is he in a big practice or by himself? Take care.. good luck with your appts. Jan

{{{ MAXINE }}} Sweetie.. I am sending your a very gentle hug... I am so sorry for all you and your father went through.. and your poor mom..breaks my heart. See I WORK in hospice.. so I know what you mean. There are some very aggressive type of cancers and frankly many docs are just not trained and even excluded by their discipline..but dang could they at least CONSULT with someone? And when a person is declining they test and test..treat and treat and the person only gets sicker and weaker. But we do work with great oncologists who get this and refer to hospice so the patient and family can decide what they want to do..which for most is comfort measures only. Cancer is just a nasty nasty monster!! AND rehab is supposed to get you UP.. dressed.. make you eat.. push push push.. I know we have patients in nursing facilities and I advocate for them all the time. Its not wrong.. its that their proceedures and instruction are different than when someone is sick and dying. A good staff RN can pick it up sometimes and let the doc know. But folks ...we and our families need to have an advocate or be our own!! So I am NOW rewarded with the most caring aggressive set of docs... so lucky. I PRAISE them.. they blush!! AND they are all so YOUNG but aggressively pursue to find out what is wrong with me ( I have multiple problems) and not abandon me..AND..they don't push me onto things I do not want to do...let ME decide and honor my wishes. ( I am old..been there ok?) So..hang in there guys.. there are some docs who try at least..listen..and honor your wishes. Warmly Jan

HI there Kat.. I love students and their projects!! 1= 0 Never even mentioned it. I have a chronic complex case 2= 2 beta blocker and now Clonidine 3= 30 mins weekly on Gazelle..but results in muscle fatigue 4= 0 I have hypertension Let us know how this works out for you Warmly Jan

Actually Maxine your "multiple" posts. made me laugh a bit as that is something I would do for sure!!! But oddly enough of the 3 neurologists I had seen..and 2 Rheumatologist who got closer..it was the 2nd Rheumy who ruled out a disorder and said its probably autonomic and write a letter to the NEUROLOGIST ..only I am sure he never read it cuz he made NO mention of it or what to do. It took my changing jobs.. then insurance...then ALL new docs where my new PCP's own MOTHER has dysautonomia and referred me to her specialist another neurologist who ONLY treats autonomic problems.. LUCKY me!! At least ER docs need to know how to recognize this somewhat.. and who to refer to..whew.. think of ALL the times I went to ER..this could've been corrected so many years ago. Jan

Sounds like you trust this doc..but why Mayo? Isn't there any other evals/tests someone can do beside going to Mayo? Ive had my share of specialists..neuros..Rheumatologists .Pulmonologist/sleep disorder doc..GI doc and great PCPs all smart..putting their heads together to figure ME out. They ALL say.. I am a complex case but I would rather hear that than they make up something or call me crazy!! LOL Hope you get the answers you need. Let us know... J Warmly Jan