mjan

Oh my dear one...I KNOW when you are NOT on this forum SOMETHING major is going on with you !! Knowing that I pray for you and hope you are given the strength to carry on..thank goodness your hubby did try..DANG!! If YOU have not earned a special place in HEAVEN..I bet you truly have. {{{{ HUGS }}}} I used to work in the dental field...gets confusing. Hey I thought of YOU as I had my endoscopic eval..and it was so rough on you. I slept through mine...and they were so nice. I had this BRAVO device attached to esophagus and its measuring acid for 36 hours. I am returning the little computer I had to wear. Did you go through that? My swallowing problem feels worse now..and he stretched my esophagus. I wonder if it just hurts for awhile. Its bearable. Wish I could stroke your hair.. and give you gentle reassurance. So remember...even if you are not on this forum YOU are not forgotten and in fact remembered fondly even more Luv N Hugs..Jan

A week is a long time. What are you eating? Keep up the fluids as you know I get that for a day or two but NOT a week..yikes!!! Maybe someone else will come along to add more...keep us posted. Jan

OK..for you its almost everyday thing with other symptoms much harder on you. For ME..its one of the worst..usually is so bad that someone calls 911 and I leave work on a gurney...many times. NOW they listen to me..and I just need to lay down..sleep it off so to speak. I just cannot always do that. And it affects my VISION now.. it goes in and out..I remain so spacey that eventually I cannot function and my speech goes from slurred..stammering to not able to talk at all..or keep eyes open. See why I leave on a stretcher?? BB has helped..but it doesn't always. Now that I have my Clonidine as a backup it has stopped these episodes so far..so good I DO appreciate YOU and your responses..I learn so much from all of you Warmly, Jan

WOW you get this every day? Dont you think there might be a med or a higher dose to help? What would happen if you are NOT on meds then? Hmm... Jan

Are you then discriminating against stupid people? LOL. Just kiddin..cuz I feel stupid at times. Jan

Thanks for responding.. I always respect your answers. Do you actually PASS out?? I do not. I ALWAYS say.. I feel like I am going to lose consciousness..get weaker..then weaker..s..l..o..w..l..y I can tell the health professional what is going to happen before it does..but once my speech is affected then my mental processing (I cannot pass mental staus test at this time..I just stare at them stupidly) I do not believe its passing out at the time..mostly cuz I can HEAR..and feel like I am awake and alert INSIDE my body. I am glad it comes across slowly..gives me time to get down.. not fall. I used to get or do get an aura..and then seizure like activity..cannot stop it. BUT this neuro in the ICU YELLED at me to stop.. that I was not having a seizure..and referred me to a psychiatrist. Man.. I cannot wait until these docs are patients one day...heheheee Jan

WOW Sara.. yes thats it exactly. I have had the seizure like episodes. ANd an EEG revealed an abnormality but after 3 day EEG study..no seizure activity. After an car accident..I ended up in ER. Either they gave me too much pain meds due to back injury..but all I know is that that is when these episodes and seizure like activity started. I do think I am NOT conscious for moments too..plus then I can hear. So.. I think I am awake. Am I? Maybe at times..maybe not. I do get an aura even if I do not have the tremors. OR.. I get internal tremors..esp inside my HEAD!!! Has to do with the sleep cycle. It only happens on the side..not when on my back. YOU make sense to me...wish you were around in 92 when no doc would believe me. So many ER visits.. looked either like a heart attack or a stroke. Then the humiliation when they did not know what the heck is was..and made me feel stupid. WHEW...so glad I have met you all through this forum. Thanks..Jan

Glad you and David are over the surgery part. Don't forget to take care of YOU as well. The stress can make things so much harder. HUGS to you and your darling David. He is lucky to have YOU!! Continued healing.. Warmly, Jan

Hello Harry~~!!! Welcome to this forum. And I am impressed with you WRITING in English. Do not ever feel bad about language as most of us cannot speak nor write in any other language. So you want to wear a kilt? Wonderful..glad its helping you with the heat problem. Do others in your country wear kilts too? What do they think? Do you get support from anyone there about your disease? And how is your medical care? Please write and stay in touch. I would like to know how you are doing. Best to you.. Warmly, Jan

WOW.. and this is my worst case scenario..cuz it interupts my ability to work..and leaves me so weak and disoriented not only for hours..but days and weeks BUT I do not get them as often as you. Do you work? Have a family and all?? Thanks for responding as this has been the mystery no one knows how to deal with. Jan

OK.. I get that you do understand. BUT could you tell me exactly what happens to you? And..does anything help prevent it? I am just about to go through testing..sleep disorder for nacolepsy with cataplexy. I just want to cut to the chase..rule OUT narcolepsy..and just LIVE with this The RX Clonidine is helping to stop it from getting to that point.. Jan

WELL...maybe THATs why I didn't think it was THAT painful..my nerves are shot!! LOL Jan

Hi.. I had the dreaded EMG twice actually and did not find it to be so bad. I did my "labor" breathing to calm myself. Felt I have been through more significant discomfort than the test itself. The needles are so fine you do not feel them going in..like accupuncture I imagine. The shock was so quick and that did not feel bad either. I cannot say it was even painful. I do have electrical like pains shooting down my legs and that hurts worse. I had the EMG on my arms and hands..and I think my upper back. I remember the back did not hurt at all. But remember I was doing my centered relaxing breathing so my body was not tensed up which could be a factor to others who report discomfort. Each little stick is quick...and bearable. Good luck and keep us posted. They read the results and then give you a report. Jan

Thank you all for the kind wishes.. its great to recieve support and not just give it. I am a hospice social worker and give and give and give... Warmly Jan

jjb: I live in MIlwaukee WI. I am seeing my pulmonologist/sleep disorder doc this week. I am going to tell him that there are other things these episodes can be coming from other than cataplexy/narcolepsy..but the Auto neurolgoist wants me to complete my sleep testing again. He says sleep disorders are related to Autnomic problems. Thanks though. I guess I have peripheral neuropathy in legs mostly and arms/hands. How is Ava doing? I am going to ask about paralysis..as sometimes I wake up and cannot open my eyes or move for abit ...but can HEAR. We've talked about this.. haven't we? I cannot remember..sorry. Hmmm... Jan

No wonder you are so scared..GENTLE HUGS my dear and continued healing. You helped me cuz I am new at this. I used to get these terrible episodes and shake like I was having a seizure. I would get an auro before it happened..but could HEAR. (see my post). I remember a neurologist YELLING at me to stop that I was faking a seizure and of course they referred me to a psychiatrist. Who knew back then what to do? Who are they referring you to for mass on liver? Be blessed.. Warmly, Jan

I know "Smiles" PMd me about this as she has the same experience. What happens is this: Autonomic symptoms start..tachy..increased BP..suddenly VERY weak. I always say, " I feel like I am losing consciousness. I look like I did..no longer able to support myself..or keep eyes open..look unresponsive BUT I can HEAR everything!!! It affects my speech and cognition as I lose control over my body. After many ER trips where they do not know what to do..but think its a stroke.. I come out of it..usually after IV fluids. Its not always dehydration. They think its maybe narcolepsy with cataplexy..but that is usually sudden loss of muscle tone..after a strong emotion...and you come back without the fatigue. The Autonomic doc still wants my sleep disorder eval completed as he states sleep disorders are also related to autonomic dysfunction. Anyone else?? I see the sleep disorder doc this coming week..want to tell him whats up. He does not think its narcolepsy either but another neuro did think so. I would appreciate any responses.. Jan

Thanks for letting us know..and thank her hubby to ok? Continue healing my dear Morgan Warmly, Jan

What a great mom you are for caring so and seeking ways to help your child. Of course!! Couple of thoughts: Brain fog does not have to be permanent. It fluctuates like other symptoms. ANd what I learned is that I needed to REST..WRITE THINGS DOWN..REST or do mindless things and tell others to help me remember. AND I saw this amazing nutritionist who could help eliminate the toxins and find out WHERE in the brain I was on overload=inflammation. When it was really bad..taking a course of prednisone helped reduce the inflammation. But the nutrtional response testing could figure out what EXACTLY my brain and systems needed and he built up me up. NOT all nutritionists have this tool NRT or know anything about it. Some CHiropractors have this training. All I know is that my 2 neuros were SOOO impressed that they would tell me to see him again. So perhaps asking his school to give him a quiet time or nap to rest his brain..AND asking teachers..students to assist him in remembering what to do etc. could make this bearable. AND not to blame everything on our illnesses. WE CAN LIVE with this stuff.. and improve our abilities. God Bless you in your discovery.. Warmly, Jan

WOW that is amazing and so true. Thanks for the link. I will listen to it further. By the way.. my husband had seizures all his life. One day he had multiple continuous seizures for over an hour. They had to overmedicate him and he was "out" for 36 hours. I did not know how he would be but knew he would have damage. He did. He lost his short term memory and had to have some retraining to even function. He had excellent long term memory. We delved into the brain "learning" to be sick or in his case having seizures. The GOOD that came out of his losing his memory was that memory was shifted more intensely to his sensory system. He could not remember WHO I was (50 first dates) but when he TOUCHED me he could get signals and emotional connection. YES we are not only a product of OUR thoughts..but collectively of ALL thoughts..which I believe travel. I am just recently diagnosed after years of not knowing and inept and unknowledgable docs guesses or judgments. I was just thinking TODAY my dear..that I will NOT focus on ILLNESS or symptoms..with years of searching and searching for answers..as I got an answer yesterday at the auto. neurologists appt. Today and every day I will focus MORE on how I feel is GOOD in my life..and appreciate it...giving gratitude!! So thanks for affirming the message that I got as well. I look forward to a discussion on this.. Warmly Jan

Oh my Bellamia..I am sooo sorry for ALL you are going through. Let me know what they find out ok? Hugs and Prayers be yours. Jan

Hi Sweetie!! Yes Dr Barboi.. And Dr Park at Wheaton Franscian Franklin office..but the endoscopic eval will be done in Racine at All Saints because his start of the art equipment is ONLY at that facility. I get drugs...yeah!!! My daughter is taking me. thanks Jan...how are YOU doing? Have you seen anyone?

After 6 months since I was tested in the autonomic lab and getting so so answers from his RN.. I get my f/u appt with auto neuro. He aplogizes for not getting back to my PCP to help me get medicated following my evals. So.. I ask..what IS my dx?? I think he assumed I knew. I did not for sure. He told me I have autonomic dysfunction..and I added POTS?? He said its more global and complex than just POTS. It includes so many other things going on that I am seeing individual specialists..all intertwined. He looked at me and even referred to a recent seminar and study he attended...and told me we studied women JUST like YOU!! (complex chronic cases) And told me that I am not crazy that I have internal tremors even inside my BRAIN..and added..but I bet others have told you that is crazy, right? I DO have neuropathy thorugh out my legs/arms. And the muscle fatigue and pain issues grow worse. I probably have an autoimmune disorder like Sjogren's which IS connected to autonomic disorder. Those symptoms are getting worse along with the neuropathy. He is recommending the lip biopsy..but if and when I am ready which would confirm its sjogren's. He even added that the sleep disorder..GI stuff is all related. He is allowing ME to choose my course of tx/evaluations. He is recommending cutting BB down IF I start taking Clonidine daily.. or 2 Atenolol a day AM/PM and only take the Clonidine as a PRN. Again.. my choice!! He allowed ME TO MAKE MY OWN CHOICES???? WOW!! I am 60 and its amazing how wonderful these new docs have treated me. They WANT to find out what is wrong.. they want to LISTEN and ASK me what I want to do. They are agressive yet can complicate my symptoms by treating this separately. He offered to be their consultant. He relates well.. he is aware of the cost of testing and seeing multiple docs..meds..etc..for what? I wanted a NAME to this montster that consumes my energy and interupts my living. Today that name was confirmed. After so many years.. you let some things go...and continue to fight for what your priorities are.. So.. yes I will have my endoscopic eval next week for GI and swallowing difficulties..and pursue narcolepsy/cataplexy sleep disorder evals..take the meds..and record how I am doing. I took care of 3 children alone..in poverty..struggling with my health issues..then a disabled husband until he died.. now that I am alone..its just time for me. Thanks for the support and taking the time to read this..means a lot. Jan

So sorry for ALL you have been going through. We do expect our docs to listen and know what to do..and..if not may think of someone else to see=a referral. But.. this tells you how little training and knowledge so many lack. Not really their fault but still ..it does not feel good for YOU. So..for any doc to acknowledge that is one thing.. to deny it or make up something that sounds right is wrong as well. I wonder if you could do a search in your area on the computer?? What I did..once...was say a prayer to be guided to the right person... and it worked!! Good luck..remember...WE care!! Jan

OH my...so sorry for ALL you have been going through. May I ask what is the other breathing problem you have? Looking forward to hearing from you hubby...tell him to let us know with as much information as you are comfortable sharing ok? Look forward to hearing from YOU then.. Gentle hugs....and healing vibes.. Jan