mjan

Hey there Suzy girl.. so PROUD of you.. processing the terrible times.. the misdiagnoses..the non belief..the lack of advocacy..no one to fight for you.. for us. After many many years of working with the mentally ill and drug and alcohol (my favorite people) still its misunderstood.. JUDGED..labeled..JUDGED..even by themselves. My heart goes out to any and all who have a chronic disease..disorder..especially who lack the advocate..the one who supports without judgment..who helps without their own time table..UNCONDITIONALLY... Good job my sweet Suzy Jan

So what you're saying is that many of the signs and symptoms match..but the origin of WHY they occur and HOW they manifest do not. I am a theapist. AND I know that panic and anxiety attacks.. often associated with a trauma or reaction to something unpleasant ..does cause an altering of the brain chemicals enough to warrant such symptoms. PANIC/Anxiety ATTACKS originate from the rush of adrenaline. Did they ASK for their adrenals to produce such a reaction??? No it was involuntary.. Could it be a medical condition...YES. Is it treated as such.. NO. When a professional tells YOU/US its all in our heads.. in a way they are right!! (I know.. its not what they mean though). I worked for years in chemical dependencies.. a very JUDGMENTAL field. It has taken a long long time for anyone to research that YES something IS going wrong in their brains chemically..causing cravings..then the inability to stop once they start. Its NOT as simple as justs saying NO. MANY professionals..esp MDs.. need some education on what is happening in our brains and systems that cause these reactions (signs and symptoms) and find ways to treat it rather than judge and dismiss only... AND for women.. its been worse. A longtime belief is: Women are hysterical..give then a sedative..they are irrational..lots and lots of judgments in MY lifetime without really knowing... and never bothering to know. It was not that many years ago that schizophrenia was blamed on the mother. I read that in MY training. MANY mothers took blame for illnesses and problems that were MEDICAL. Ok.. my 2 cents.. Jan

Yes I work. I recently told my supervisor that I was "thinking" about cutting down a day..which would help me and helpout the agency who is cutting back drastically. I dont quite trust this bunch though. I think tkhey were trying to build a case to let me go end of last year when the census was low..called me on the carpet about stupid little stuff said from other folks. Then they lost another social worker and I am a hard working person.. so suddenly I was really needed and they were all nicey nice. I cannot get through a 5 day week but it doesnt matter how many days..as ever 3 weeks I work 6 days. But after 1-2 days I can feel awful. This vision problem is nearly daily now. Even when I have a "good day".. it can change in a few hours. NO..I do not have a family to care for anymore. My kids are grown and my husband died. So I dont have any pressure to clean etc and can rest when I want to. I pace myself. But my sleepiness is supposedly related to narcolepsy..which I will be having a daytime study soon. I HAVE to made a decision soon on working 4 days a week..but can I afford it?? Takc care Jan

P. S. And what kind of parents do not let your rest..take care of yourself? What does that say about them??

Oh my ... does this sound familiar. NOT for me..but my poor husband. FINALLY he had to tell them in ADVANCE he will not be doing this or that. He did not do well all the time but did enjoy when he could say NO. IT FEELS good. What does your doctor say about what you need to do or not do?? Could your MD be a back up? I like the sibling who just doesnt answer..so.. dont GO.. Dont ANSWER.. and see how good you feel!! TRY it.. WE'll have your back!! Jan

HUGS to you ~! I FEEL for you as I am going through the same. Do you work? Its so bad that while I was waiting at my PCP (great lady) I could not stay awake. She comes in and apologizes and I say thanks... I needed a nap!! ANd they are about to test me for narcolepsy..she still waiting to talk to the auto nomic neuro to see what he wants..but he too suspects narcolepsy. No matter what.. this IS deblitaing.. I could nap 2-3 times a day !! I tRY to excerise.. and do not get a 2nd wind either. I can only stay on my gisele machine 2-5 mins. I just wanted you to know I FEEL what you do. Again.. are you working? Have a family? When is the last time you folks dusted..vacuumed?? I think its amazing I get a load or two of laundry done. And the stairs.. say no more!! Jan

So.. is there any way to treat these vision problems?? Jan

Thanks Cat and Janie. I DO have both short and long term disability as a benefit. I have to make a decision on whether or not I can afford to lost over $700 a month working less. I would LOVE to only work 32 hours especially is its for 3 days. But like I said they are letting people go and I don't want to give them ammunition. I work hard BUT I am making mistakes. Forgetting.. not SEEing well.. or placing the wrong name full or part of a name on our forms which are legal and thank good ness the secretary catches some.. and my supervisor. I love what I do and dont want to make ANY mistakes.. its patients and families lives. I am not sick enough to stop working..but just in case this will all lead up to disability I want to make a good effort try.. ya know? Jan

YES YES YES !!! When I met the neuro for the autonomic testing...and told him that my vision is getting worse even tho I have had 2 RX changes for glasses it didnt matter. He told me the focus problems are related to autonomic problems. But now its more often..nearly daily.. AND it clear up with crystal clear focus for a bit too. So its NOT the glasses or prescriptions as I have been through that 2 times and it did not make a difference. Now I get headaches with it. My vision is really blurry with dbr letters.. not side by side like in dbl vision but above...Do you have that? Do you also end up with a headache..nausea?? Take care, Jan

This all gets complicating doesnt it? But JEN..your daughter does not sound epileptic. Did they actually see an abnomal EEG?? Did they do the 3 day video EEG? Cuz I get an "aura" that I am going to get these "episodes" as I call them too. IT ALWAYS starts with autonomic symptoms...high BP/TAchy.. and then speech problems.. then altered state of consciousness when I end up in the ER. To THEM it looks like I am sleeping or unresponsive. BUT I can hear? IS your daughter aware of what is going on..but.. cannot move? So I would look into cataplexy with a sleep study done.. or.. periodic paralysis. Seizure meds are horrible..(my husband was epileptic) and unnecessary esp to a child if not needed. LEt us know how she's doing.. or PM me.. Jan

OK.. my symptoms..mainly fatigue including MUSCLE fatigue..coupled with vision problems is making my job very difficult. I have mentioned to my supervisor that I am thinking of this and what did she think. If I reduce my FTE hours from 40 to 32 could I ever get it back? She told me to discuss with the VP..she could not say. Now you must know that this agency is cutting back AND letting folks go. I am a social worker and we are actually a bit short in that area by 1.5 social workers..but there is a freeze on hires. What I guess I am asking is that if I reduce my hours due to a medical reason.. am I setting myself up for being let go? I dont yet qualify for FMLA for another 3 months ( I checked).. can get a medical leave but they cannot guarantee my job security until 7/09. Any ideas? Dos.. donts?? Thanks Jan

CONGRATULATIONS Dayna!!! The end of a long struggle.. gotta love the goverment ...best to you Jan

First of all.. CONGRATULATIONS !!! Preston.. what a powerful name. I hope you wrote down your experience for HIM to appreciate YOU and all you went through. I find your experience amazing. Weren't you scared? How is your BP now? Does it always run high... or only when you were in labor? Be blessed..little mommy.. kisses to your hubby and oh so precious son.. Warmly, Jan

OK.. thats closer to what I have gone through. With periodic paralysis it can be sudden weakness...so I am confused. How did they diagnose you for sure with narcolepsy with cataplexy?? And.. what kind of treatment are you receiving?? Can you drive? Jan

Its nice to have MDs beleive in you AND be knowledgable. Someone else here told ME to look up Periodic Paralysis. Because I am about to go through testing for Narcolepsy with cataplexy.. I do not have the typical strong emotions that lead to my attacks. I ALWAYS have autonomic symptoms that can lead to these episodes where eventually I look like I am unresponsive or not alert..cannot move arms legs..keep eyes open.. BUT I can hear. What are your episodes like? Jan

HUGS to you ~! I am sorry for ALL you are going through. Ironically, I am home "sick" today..and barely got through yesterday. At our weekly staff meeting on Tuesday I announced how I have been thinking of working one less day a week..but know financially it will be difficult. This would help the agency and if I get 3 days in a row..may help my fatigue etc. Its just that I may not be promised full time if and when I feel better. So.. I sympathize with you so much. I have only been at this agency 7 months and am 60. Its too early to retire. I hope you get the responses you need. But know that I care and feel for you! Warmly, Jan

WOW...so they let the cat out of the bag..so to speak!! Yess applying and receiving SSI/SSDI is such a chore and test of patience and perserverance. I would LOVE to learn about YOUR case and how or why its been denied if you would. One of the problems when you are under a certain age.. 50 if I remember right..but don't quote me..is that the younger you are the less chance of being approved. They will have to pay more out if you're younger. Did you ever hear that? I am 60..and am thinking of at least reducing my work hours.. but applying for SSDI I would have to be off working for a long time.. a year? What are you living on? Or do you have a 2nd income coming in.. I do not. My husband who DID finally get SSDI.. died. So I am on my own. STay in touch.. I am new here. Warmly Jan

I am sooo sorry for ALL you are going through. And I know about the "invisible illness" misunderstanding. My husband who was usually very considerate just could not get my limitations. BUT.. that "panicky" feeling and behaving IS a part of this. It reminds me of a super jet sitting on a run away.. revving up its engines higher and higher but NOT going anywhere. AND..the CRYING.. yes yes yes.. CAN RELATE. Last time I went to the ER (cuz my bp and symptoms were off the roof).. I had to talk really really fast.. (I would anyway with thise surge) and then started crying. I remember telling the nurse as I pointed to my tears.. this is an autonomic response.. the crying is just part of it. The RN looked at me sympathetically but not positive if she really got what I was trying to tell her. After my "attack" was over.. and I crashed.. with not enough energy to even lift my head up.. I told her softly.. this too is part of these attacks..thanks but no thanks.. I can rest at home. I paid my ER copay and left. At least the ER MD understood. She was ready for BP emergency..but listened to me. NO tortuous tests or assessments.. she waited it out as I asked her to..ready to intervene. Actually she said if she HAD intervened my BP would've bottomed out..too dangerous. PM me anytime too. We're ALL here for YOU!! But..what do you do to treat Lyme disease?? Warmly, Jan

I am sorry for your struggle. BUT I am impressed with all you try to do each and every day. I KNOW the self talk.. come on.. get out of bed..(thank goodnes I have to pee)..every day I say.. call in sick.. they'll understand. Nope..cannot. I have "good days"" claim it with excitment then in an hour or so later.. I just want to lay down and sleep. Ok Chronic Fatigue syndrome IS a real DX for many many related autoimmune disorders. I used to get SOOO bad that I could not even hold up my head.. so.. I took a leave of absence from work.. and found this amazing nutritionist who tested me. His results said I was near ORGAN FAILURE!! He detoxed me.. build up my deficient systems and whalla many many things improved. I STILL struggle with symptoms but he helps alot..that my docs tell me to return to him. He uses lazer light to help the nerve endings "re-communicate" so that the brain CAN send electrical energy to heal. But now I cannot afford him as I just had my autonomic testing out of network and have to pay for that first. But..he saved my life at one time so I could return to working. NUTRITION .. the BRAIN needs nutrients..and when depleted.. and toxic even from our meds.. our WHOLE body/brain and all suffer. We ONLY have so much energy to go around. Best to you Jan

May I ask what your treatment is for costochondritis? This kind of pain..which keeps me from breathing deeply has lead to all kinds of problems. Not sure how this relates to ANS problems but will listen to those here who know. All I know is that this kind of pain for ME comes from my rib cage..one side or the other.. OR.. all around which grips SO tightly that it literally takes my breath away. I cannot lay on my side..as this seems to trigger it or on my back.. THIS always seems to trigger the worse spasms of my life. So I take Methocarbam which is a non drowsy muscle relaxant with 3 ibroprofin and that seems to help. When they thought I had MS (last 4 yeas) they called it the MS HUG. Let me know what you think...but it was my rheumy who measured my rib cage while taking breaths and said that I do not ever take in deep breaths.. and I have what seems like asthma..but its more coughing due to irritation which also contributes to shallow breathing. Best to you.. hope you get answers. Jan

YESSSS it happens in clusters..but of late.. its getting more often and more intense with MORE symptoms now.. but then.. I am old LOL Its NOT KNOWING when that catches me off guard. Jan

For those of you still struggling to understand PSYCHO-SOMATIC or. MIND-BODY notion..its probably because someone made you feel its ALL in your head..or..cuz you're anxious (need a psychiatrist)..etc We are often not believed..dismissed..misjudged..mis understood..etc etc. All I am saying is that there is a CONNECTION..subconsciously. For example.. holding IN our feelings..like anger..can lead to changes in our bodies on a CHEMICAL level.. and long enough inside our body these chemical changes lead to DIS-EASE. Its NOT your fault. And now I dont mind if someone says. "Its all in your head"...well..in some cases it IS!!! My brain has LESIONS and inflmmation and imbalances due to toxins..etc..and so YESSS all that causes neuro or physical symptoms. Of ALL folks around WE undersand how this happens.. and how often we get misjudged or labeled.. of misdiagnosed. Jan

WELCOME and WOW I cannot get over the C section with NO anesthesia working??? YIKES!!! That alone would be so traumatic..your nervous system would be sooo affected. Stay with us... as you learn. I am not sure about the whole POTS thingy either. My HR/BP goes whacky while sitting..and gets bad enough at times that I do not have to stand for the spacy..dizzy..going to pass out feeling occurs. It may or may not get worse when standing..but when its BAD.. I can no longer even STAND. They are still trying to figure me out. just wanted to say HI... and offer you a BIG HUG!! Jan