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RE: Clair

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I will, Clair - thank you! :) Don't worry!clair morgan wrote: Jeanne Ive only just read your message so I dont know what responses youve already had but I think it is really important for you to see an opthamologist ASAP as I have had sarcoid on both my optic nerves and the on of the first signs of my sight failing is colour blindness - I have lost the sight in one eye because of failure to get treated straight away and nearly lost the sight in the other a couple of times once it took a few months to get back after one severe attack. IV steroids has usually worked pretty quickly for me. Please get seen straight away ClairJeanne Betters

wrote: Thank you, Rose! No apologies ever needed! I'm just very grateful to have finally met some people who share this rollercoaster ride. I haven't been online in a few days, so I've been trying to catch up on what I've missed. I honestly want to cry - part good cry, part sad cry. I can't believe that all these crazy things going on inside my body are things that you all go through. It's so overwhelming. It kind of feels like being in therapy - it feels good to sort thought it all, but it's awfully gnawing inside having to face it. I'll let you in on a little secret - I'm really scared. What of? I don't know exactly. I guess it's because I could lose my sight, my mind or die... Yeah, that about sums it up. I have felt so helpless and try really hard not to burden my family and friends with complaints that they cannot help me with, so it's locked inside. And the doctors really don't understand it and I feel like they are just arbitrarily medicating me with no relief. I have read where a lot of us feel like just trying to ignore it. I, too, have tried to just stop the meds and "deal" with it, but within a day or two, I find myself in so much pain and confusion and misery, that it's just not worth giving up on the meds. Lately, when I wake up in the morning? Everything is in different colors - for example, my son's blonde hair looks green or blue, and the white shades on my bedroom windows look orange. That scares the heck out of me! Am I going blind? Agh! And if I am, what will I do without all of you when I can't see my screen anymore? Ugh.. I don't want to over react here... I'm sure it'll be something silly, right? Anyhow, I have an appointment to see my regular physician next week. I hope he takes me more seriously. If not, I will be getting a new doctor! And I'm going to try to find another neurologist. If I have to travel to timbuktu, well, hopefully there won't be a plane involved, but I'll get out there. Can I ask you a few questions? They've done chest x-rays, but they say my lungs are clear. But I can't breathe well - I'm always short of

breath. Could they be missing something? My periods are erratic. My OB doesn't believe in "peri-menopause." He says you're either in menopause or you're not. Sometimes I bleed for weeks, sometimes I don't get a period at all. Is this something that can be related to the NS? Also, I hear a "draining" sound from my head every once in a while - it used to be more frequent after the spinal tap. Both doctors look at me like I need to have my head examined when I ask them about it, but I'm thinking it might be something we get with NS... Do you have this happen? And the pain... The head pain is excruciating, but I have

terrible pain in my arms and legs, too. It has been progressively getting worse. Should I ask about some other type of medication? Is there anything out there that is non-steroidal or that won't promote weight gain? I'm two people in one body! I hate it. There's not a dang thing I can do about it, either. I think Tracie told me that it could be that my pituitary gland is being messed with... yikes! Whatever it is, the doctors aren't taking me seriously and just expect me to "work through the pain" and exercise! Oh my God! They have no idea what they're saying to me! I have a gagillion more questions, but these are the most pressing. Don't feel you have to rush to respond... Just whenever you have a chance, that'd be great. I really appreciate your thoughts! (Gosh - 'just looked at my email to you - guess I could be called jabberjeannie! LOL!) Hugs, Jeannie Rose wrote: Jeannie, I'm very glad you found us, although I wish we had something else in common. Please forgive me for the long delay in answering your letter, and don't worry about long messages; my nickname is Ramblin' Rose for a reason! You are right about needing a doctor who is knowledgeable, willing to listen & take you seriously, and respects your right to question your treatment options. Your family doc is behind the times; for the last several years the AMA and other medical groups have encouraged patients to be involved in their own health care decisions. There has been such an explosion in information that no doctor alive can be current on everything. Even most neurologists are ignorant of recent research & treatment options for sarc. I don't know a sarc specialist in Pittsburgh; hopefully another member will have some advice for you. You may have to travel a bit. I'll try to find some info for you. Just know that you are not crazy. Sarc is a sneaky disease & can pop up in unexpected places. You need doctors who recognize this. Again, welcome to the group. Ramblin' Rose Moderator Get MSN Messenger with FREE Video Conversation - the next best thing to being there! Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. To help you stay safe and secure online,

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dear clair thanks for writing back, it seems like i already answered this but i didnt see a reply symbol so i guess i didnt. sorry about that. i have been trying to do some research about prednisone and shingles and such. they look infected to be honest. its the weekend here and i see the drs saturday, the beginning of our week here. if i dont like what they say and they arent any better i will go somewhere private for a second opinion if the opinions match up i guess i will live with it. haha. what else to do? listen to this theory i was told wednesday when i called like an idiot in desperation in pain....... i was waiting so desperattly for all the other pain meds to get out of my system thinking they would need to be befroe i could use my lovely pain patches ive held onto all this time and thought i better call and inform someone im using it and be sure its okay cause im on new

seizure meds and having alot worse siezures now than before etc. so i did - like a moron. the dr said to me oh no no no. i cant take that it must be an opiote of some kind and its not good to let the patient take opiotes, tehy will feel comfortable right away and get used to this. he told me to increase my amytriptiline by 10mgs only. i wanted to scream. they have no concept of pain relief. or pain itself i think. its my fault i shouldnt have called. i think some of ht epain is better, some is the same. some of this looks infected to me. but what do i know. i will see on saturday. the dr i saw about the shingles hadnt even told my drs that i see all the time that i had them. he was shocked that i had any rash at all. good grief. and they had talked this week

because he knew i was coming saturday to see the other two drs. they just didnt feel shingles worthy of mentioning? hope you are doing better than me, take care Kim NS Moderator

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