RE: Jeannie

[Guest guest]

Jeannie, I am so sorrie for what you are going through right now. I thought for a moment that I had written your email. Why do we all sound somuch alike? You have every right to be afraid and fall apart sometimes and to just cry about what is happening that you have no control over. You know that here you have all the support that each one of us can give you. You are in my prayers, Barb J.Debbie wrote: Welcome back Jeannie, but sorry that you aren't doing so well. I can sympathize with you about all the issues you are having with your drs. It is so hard to get the different specialists or pcps to work together on your case, I know - all the different tests and such. I can also relate

to about your son hugging and praying for you. My youngest did the same thing recently (he's 15). They know something is wrong and Mom isn't the same. I hope you improve real soon. And don't worry about comming here we are always here for you. Hugs Debbie Jeanne Betters wrote: Hi everyone! I know it's been a while. I've been working with my two goofey doctors to get the necessary tests scheduled and done. I don't have the energy to explain the mess that occured with both offices arguing

who had "control" of my prescription and who was responsible for the claim... PLEASE!!! I did all the work, and I bet their collecting a few hundred dollars because they picked up the damn phone when I called their office. But don't worry... I'm not bitter or anything. LOL! Two out of the three days, the doctor hadn't faxed in the script to the hospital, and then both offices argued who was responsible to fax it in, delaying me over an hour both times, and one of the girls was extremely rude, snippy and I wanted to reach through the phone and shake her little head silly so she'd fall off of her high horse and lean her ear towards me for a g-d minute so she would know why I was calling.... INSERT BAD NAME AND NASTY EXPLETIVES HERE...OH, AND HERE... AND HERE, TOO!... I digress... sorry... They did an MRI. Fine. Nothing that shows I've had

strokes, no evidence of more lesions in my brain or anything that looks like I've been having seizures. Yay. Oh! And this was the first time they injected the dye and I didn't get nauseous! That was good! They did the EEG of the brain... The readings were "off," so the tech didn't complete the last round of tests. She thinks the machine needed repair. Hmm. But according to my doctor's office today, what tests they did do looked fine. Yay. I think I made a new friend in the tech, though. She and I had a nice chat while she hooked my head up to the machine. We've run into each other a couple of times since... Long story, but grateful for the blessing. They did the VEPs. Tests usually take 40 minutes. My tech stopped after 10. Said she knew this was bothering

me. Said the doctors would have enough with what she had done. She said she wasn't going to turn the lights on because she said she knew they would bother me, felt I had been through enough. That was Friday. Today the doctor's collegue called and left a message in a heavily accented voice: Everything looked "good." What the heck is that?! "Good." The tech said "no more - it's too much." The doctor says, "you're good." Do I live in the twilight zone, or what? Well, I guess I should also mention that when she (the tech) came to get me in the waiting room of Friday, she was upset because her schedule was running behind and her friends were waiting on her in the cafeteria for lunch.... And just as she finished mucking up my hair with the globs of adhesive they use with the wires, one of her friends popped in to say that their patient wasn't going to make it and she needed to leave the floor to

go call his family... Uh...Yeah. Right. Uh huh. Mmmm hmfph. Then the tech said, "So much for lunch, huh?" To be honest, I lost my appetite knowing someone was dying in one of the rooms near me. GEEEEEZ. I HATE WESTERN PENNSYLVANIA MEDICINE!! I'm a God fearing woman, but there are a lot of nasty expletives running through my head that I'm just DYING to spew... I'm so done with all of this. They act like I'm crazy and stupid and weird. EXPLETIVE them!!! I'm telling you, I'm far from perfect, but I am NOT crazy. My husband and Mom are worried sick and are treating me like I'm two again, now more than ever! I HATE THIS. My 10 year old kept asking me today if my headaches and pain were gone. I told him they were

- they really were! I had the first healthy day I've had in ages today. He cried, put his arms around me and said with his little lip quivering, "Let me tell you what's going on, Mom. I prayed for you last night. I prayed that you'd be healed. And then I prayed that I could get the XBOX 360... " Ten. What a cool ten year old, huh? I laughed. I cried. My baby prays for me. How about that? (The XBOX 360? May not happen for a while, but you never know. I'd rather not go there with the video games.) Today, at least, I felt healed. Not only in my head, but also in my heart. ON THE OTHER PROVERBIAL HAND, when the guys go to bed and all the windows are shut and the doors are locked, I fall apart. I cry every single night, and I'm NOT someone who cries, so this is a big deal. I'm

scared. Isn't that ridiculous? I can't believe me - "Queen Superfaith" - and here I'm crashing emotionally. I can't handle it. I don't want to handle it anymore. This bites! Tomorrow I'll scoff at how I feel tonight. I'll feel stupid and childish and ashamed because I know better than this. But tonight, I'm crashing inside. I can't hide it. I've been avoiding coming to the support group because - and please forgive me for being so weak - I just don't have the strength sometimes. I am so worried about all of you, and then I see things changing in myself and I become frightened. I hope you can forgive me. And then the danged doctors say it's nothing, but it IS something - I'm feeling it! I should be rejoicing for the test results! I should

be catering a party with family and friends and just celebrating! But I'm more frightened than ever because it doesn't matter what the doctor says, I'm telling you this is real! Please say a little prayer for me today, ok? I'm sorry to dump on everyone. I promise I'll do better next time. I guess we all have our moments. Tell me what's new with everyone... let's get my staring mind off of me for a while, ok? Thanks for putting up with me. I have to go... My husband just woke up to get ready for work. I'm wide awake. I think I'll make him breakfast. Talk with you soon!Love,Jeannie Connie Griffis wrote: Jeannie,I'm like Rose, there may be some seizure problems, butI don't think your going whack city. My cousin usedto have a seizure where she would start standing inone spot and staring and then she would slide to thefloor. They figured it out and she does everythingany one else would do. Here's praying they have a good solution. Please trynot to run to far into the unknown yet. It's not timefor that, wait till you know what to worry about. Take Care.....Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------Hi, Jeannie. I'm glad you wrote. I'm too tired tothink straight, but just wanted to respond so youwould know someone was thinking of you tonight. Ihaven't had the experience you've had, but it couldvery well be some

type of seizure & needs to beinvestigated. I understand your fear of losingdriving privileges; I have the same fear but fordifferent symptoms. I HATE being dependent on othersto take me places, but I don't know how I would livewith the horror of causing injuring or death tosomeone because my driving was unsafe. Let's assumethat whatever your weird "spells" are, they arecontrollable, allowing you to continue driving. Right? Right! I'm off to bed now, with Jeannie on mymind. Isn't that a song? Love & prayers fromIndiana,Ramblin' RoseModerator---------------------------------From: Jeanne Betters <gabbysauntienini (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: neurosarcoidosis Subject: Hi everyone -Date: Wed, 2 Aug 2006 23:54:42 -0700 (PDT)Hey there my friends -I've been out of touch - I'm sorry! There were somany emails when I logged on a couple of weeks agothat I gave up and deleted them all.... I hope you'reok and not mad that I deleted - I honestly do care,but I couldn't possibly keep up.Things haven't been ok on my end. Things have beenvery strained between my husband and I. It's veryinvolved, but nothing I want to delve into right now. I'm very scared. About two months ago I startedhaving these numb feelings in my head.. They didn'thurt, they felt comfortable, actually; I'd stare fora while and then my son or hubby would keep talking tome until I responded. I can hear everything going onaround me, I'm aware, but I don't care because itfeels

so comfortable where I'm at... Is that crazy??? Then a couple of mornings ago, I woke up all confusedin the middle of a conversation with my husband at thedoor of our detatched garage... It was dark, I was inmy PJ's and I had no idea how I got there or what theheck we were talking about. He was a little freakedout, to say the least. Well, to make a long storyshort, tonight (last night) he caught me in yetanother "unresponsive stare," as he calls it, and heabsolutely freaked out. He is adamant that he'staking my vehicle from me and wants me to make anemergency appointment with my PCP for today. He saidhe's going to call me in the morning to remind me andhe'll leave early to take me in. He won't let medrive anywhere, it seems. I am very resentful, but Iguess if the shoe was on the other foot, I'd do thesame. I've had major lapses of memory... I think Itold you about it... He and my son recount

storiesthat apparently happened when the three of us weretogether, but I have absolutely no recollection ofit!!! At first, I thought my husband was making thisstuff up to make me think I was crazy (we've had someproblems, so I was sure he was making me out to beworse than I was)... but then one incident where myson got very upset that I didn't remember convinced methat there is more to it than I had believed...ANYWAY...I just spent a little time looking up seizures,because I am thinking that might be what this is, butI don't know. If any of you have experienced anythinglike this, please share with me... I'm scared. Itdoesn't hurt. It's actually quite nice... I know. Isound nuts, don't I??? I'm afraid I'm slowly losingmy mind or something. I will call the doc in themorning, but tonight I can't sleep because I'mworried. My son has also experienced this with me anumber of times, and it has scared

him. Earlier todayit happened when one of his friends was over swimmingand he told her, "there goes my Mom again... She'llbe fine." Ugh... Like I was goofey or something.Am I going to die? Am I going to go goofey orsomething where I can't function? I'm sure my PCPwill run tests if my husband goes with me... What canexpect? Do any of you go through this? Is itcurable? Treatable?Thanks for putting up with me. I feel so stupid andso exposed... And I'd be lying if I said I'm notscared. I'm scared as heck. My grandfather hadParkinson's... My grandma had poor circulation to herbrain. And I've got neurosarc... Is there anything Ican do to prevent my son from getting this??? Willthey be able to help me so that my life has somenormalcy to it again???I'm sorry, you all. I suddenly am fearing thatthey'll revoke my driving privileges and that I'll becooped up at home without a life forever. I

knowthat's stupid, but I'm really scared. I'm sure thedoctor will laugh it off tomorrow as something simpleto treat... but I'm so scared. I feel like all themedical professionals out there just want to drug meand make me go away... and that I just might actuallygo away (mentally!)!!!I hope I am not upsetting anyone. I'm just so scared.And I know if anyone understands, it's all of you.Thank you for being my friends. I don't know what I'ddo without you.Love,Jeannie---------------------------------Do you Yahoo!?Get on board. You're invited to try the new Yahoo!Mail Beta.---------------------------------It?s the future of Hotmail: Try Windows Live Mailbeta __________________________________________________