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Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 6/23/2009 8:01 PM (GMT -7)   
Skeye,
Just wanted to wish you well for your ophthalmologist appointment tomorrow (& your appointment with the neuro-ophthalmologist appointment next week). I sure hope they can finally figure out what is going on with your eye & that they can fix it without too much trouble.

hugs,
frances
Moderator -- Depression Forum


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/23/2009 8:13 PM (GMT -7)   
Thanks Frances!

I'm not expecting too much. Yet, I still find it hard not to get my hopes up (and get very disappointed after I am let down) after going on 3 years of this. I'm just scared, since once again, the function & vision in that eye has worsened, quite significantly, and the last time that this happened (several months ago) my doc really scared me about MS & other systemic & brain conditions. I'm waiting for the neuro-ophthalmologist to call me back, as he wanted me to check in after I saw the rheumatologist that he sent me to (saw him today & it was a waste of time). Last I talked to him, he was thinking of doing an MRI before I see him next week, if I the rheumy didn't have much to say & I could get one scheduled that quickly (hopefully I would be able to. Last time, he got me in within a few days. I think it helps that he is some big guru at Yale).

I hope you're eye & everything in general is feeling better tonight!

Skeye

Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 6/23/2009 9:10 PM (GMT -7)   
hey skeye i wanted to say good luck too! i hope u get some awnsers and some relief! be sure to let us know what u find out and what happens! youll be in my thoughts!
best of luck and hoping ur pain will get better!
Katherine
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 6/23/2009 9:49 PM (GMT -7)   
I'm with you too Skeye. Here's hoping for some answers.

Ya really take for granted your eyes until something like this happens. I can't help thinking about you all the time and wishing you could get out of this mess and that your eye were better.

I am praying for you.

Gentle hugs,

Lindaloo
Co-Moderator Chronic Pain and Fibromyalgia Forums
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/23/2009 9:53 PM (GMT -7)   
Skeye,
I feel bad I've not been as in touch with everyone recently. But I think of you often and will be thinking of you tomorrow. One of these times you'll learn some answers. Maybe not for awhile, maybe tomorrow. I know it's hard to be disappointed over and over, so I understand if you just want to set your expectations somewhere in the neutral zone.

((((((((((Skeye))))))))))

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/24/2009 6:23 AM (GMT -7)   
Thanks Katherine, Linda, & Palady! I see the doc this afternoon.
Palady, don't worry about not being in touch as much lately! You have so much going on yourself, you can't do everything! We all know that you care deeply & we are all worried about you!
Linda, you are so right! I've always had major eye problems, my whole life, but what I have been going through the last 3 yrs is completely different. At least before, I always knew what was happening & what our options were to fix it. Now I am just into uncharted territories. Everyone is. Thanks for your prayers!! I'm hoping that they will help me!

Skeye

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 6/24/2009 6:41 AM (GMT -7)   

Skeye,

I am keeping you in my prayers and hoping that this Dr. will find an answer for you!  Hang in there and good luck today sweetie!!

XXOO
Patti


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 6/24/2009 12:11 PM (GMT -7)   
Skeye, I have gotten behind in catching up on everyone. I am getting there. I do hope that your appt. goes well. I don't understand why they haven't dx. your condition. Do they just not know what is going on? That has got to be bad to be in so much pain and not to know why. I do feel for you. Someone,somewhere has got to have the answers you seek. Is the pain in both eyes or only one? I can't imagine... I have had migraines behind one of my eyes before and it is always horrible. I am sure that is mild compared to what you are feeling. Are you in constant pain? Do the meds help any? Sorry for all the questions... I do hope you have a good appt today and it wasn't a waste as you other appt. was. This has been going on for far too long and to not know why or what you are dealing with. I will be thinking of you. You know you aren't alone. We all care about you. And we are all here for you to help you,support,and encourage.
anice

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/25/2009 7:13 PM (GMT -7)   
Well, Bad news folks,

I'm really, really scared this time. I saw my ophthalmologist yesterday. What I was fearing has come true. The function & vision in my bad eye have gotten much worse over this last month, and now my "good" eye is affected as well (which actually came as a surprise to me, although I should have realized it & once I thought about it, it does make a lot of sense). I don't think I can go into too much detail right now, because this is all too new & too painful to even think about, let alone talk about right now. But basically, I am literally "loosing control of (both) my eyes," and will continue to do so, unless we can diagnose this & treat it. I most definitely have some kind of progressive central nervous system disease, although we don't yet know what. It is probably autoimmune. Supposedly, there is no other possible explanation, according to some of the neurologic symptoms that I now have in both eyes that can only result from disease of the brain stem. I wasn't sure that I believed it when my doc hinted at this a month or two ago, but his argument & evidence is now pretty convincing. He could even describe for me exactly what I was experiencing, without having even told him - just based on a quick exam. He says, it is only a matter of time before I can no longer control my eyes & as well as only a matter of time before I begin to show more systemic symptoms, whatever they may be. And there is no way to correct any of the visual or functional deficits that I have, because my eyes (especially my bad R eye) are literally changing prescriptions & alignment every few seconds. I don't know how I managed to hold it together during the whole appointment. I almost lost it while I was checking out (the receptionist asked me if I was feeling okay), but I made it into the safety of my car before the water works came.

I spent an hour on the phone with my PCP last night, talking about this new finding & other things. In fact, by now, I've talked with 4 docs, other than my ophthalmologist, about this (my PCP, my MD-homeopath, my father, and my osteopath). I was hoping that they were all going to tell me that this was a crazy idea, but instead they all agreed with my doc's assessment & plan. I think now I understand why my father said what he did the other week; Among other things, he's scared too, and he rather have this all be caused by something psychological, rather than physiological, because that would be easier to fix (my PCP said that he was trying to wear both the "doctor hat" & the "father hat," while he needs to just wear the "father hat" right now). I feel awful, but when my doc was telling me these things, part of me thought: hah! I proved you wrong, yet the rest of me was desperately hoping that I was wrong, and that my doc was wrong, and that my father was right.

On top of everything else, we finally concluded that I am completely resistant to opioids/pain medication. So I have begun to taper off the fentanyl patches. We really don't know where to go from here. So now I'm also really scared that we are never going to find anything that helps & that I am going to never get any relief from the pain. I know that I need to think more positive. I try, I really do. I'm usually pretty postive, except when I get upset, and right now, I'm beyond upset. I won't even start talking about the other things I'm worried about now, too. I just need to step back & take this all one step --- one day, one hour, one minute --- at a time. I see the neuro-ophthalmologist next week & the neurologist in 2 wks, and we will go from there. Next up is probably a new MRI & a spinal tap, but I'll know more shortly.

Prayers are greatly appreciated. Maybe if lots of people pray for me, He will listen. Although I'm certainly not the only one here going through very hard times & in need of prayers, so save some energy for them too! I wish that all of us could just get a break, God knows we've all been through enough!

Skeye

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/25/2009 7:26 PM (GMT -7)   
Anice,

Don't worry, I am quite behind in my reading as well. And don't worry about the questions, I'll try to give you a brief synopsis:

We've been at this for 2 1/2 years. Frankly, I don't understand why they haven't diagnosed me yet either. This all started with an injury, but now it appears to be systemic. Only within the last ~ 6 mo have things progressed enough to give us some new, important "pieces of the puzzle." We just don't have all the pieces yet & it sounds like we probably won't have them for quite a while. My doc says that it is really eerie how closely my case is mimicing that of another woman that he treats & she has been at this for 12 yrs now, without a diagnosis! He just kept going through my chart yesterday mumbline "What am I missing? What are we all missing?"

As for the pain, it is only in one eye & the visual and functional loss is mostly in the same eye, although now the deficits have begun to appear in the "good" eye as well. And yes, I am in constant pain. I usually hover between a 7 & a 8 on the pain scale, although mornings & nights are sometimes worse. And nope, no meds have helped. I've been through every nerve medication that all my slew of docs can think of, as well as many others. I also don't seem to respond to opioids as well. I've been on quite a few & have gotten up to incredibly high levels of each, and never once did I experience any pain relief, nor side effects other than constipation. Honestly, if I didn't know that I had taken the meds, I wouldn't know that there was anything in my system. We just gave up on our "last hope" opioid yesterday. None of this makes any sense to me.

Skeye

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 6/25/2009 8:13 PM (GMT -7)   

Dearest Skeye,

You are in my thoughts and prayers, we are here for you ALWAYS!!

((((((((((((((((Skeye))))))))))))))))))

XXOO
Patti


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/25/2009 9:55 PM (GMT -7)   
Skeye,
There are really no words I can find to adequately express my feelings for what you're going through. I want to give you one endless hug. I completely - completely - understand needing to absorb the news in tiny, tiny bites. But I will still continue to have hope for both of us!

(((((((((((((Skeye)))))))))))---->endless hug.

PaLady

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 6/25/2009 10:44 PM (GMT -7)   
Skeye, First I am so sorry that the other eye is starting to be affected. As I contemplate what I know about you, you are a very determined and sensitive woman. The problems that you are experiencing is major as it has the possibility to change what you are trying to do with your life. I told you the other day that the best is yet to come. I believe that statement for my own life. I want to encourage you to not lose sight of what you know. Don't allow the things you don't know to take that focus away. You are not one that gives up easy as can be seen by your persistence but we all get weak at times. As you contemplate the next steps, maintain faith that your doctor is still looking and seeking possible diagnosis as well as treatments. You abouve any one knows the body is complsxt and we know really very litlle sometimes. I am still keeping you in my prayers and will not change what I am asking for. I look at my age and all I have done and I would give up any help in my life so someone like you can strive ahead with your dreams and plans. I have already accomplished more than I ever thought I would. Believe me, I am not ready to quit but I see so much potential in those who are still dreaming. Keep fighting.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 6/25/2009 11:25 PM (GMT -7)   
Skeye

I also keep you in my prayers, I don't understand why such things happen, you are so young, I wish there was something I could do or say! Skeye you are a very strong young lady, I do wish you strength to be able to continue to endure, till they find a diagnoses. I feel that I am at a loss for words, but know that I wish and hope for you, only the best!
May you continue to be strong!
Peace be with You Skeye!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/25/2009 11:42 PM (GMT -7)   
Hi Skeye, Oh I wish I could do something to help. Its gut wrenching to go thru the I don't knows with the drs. But, on the other hand we have to respect them for their honesty. I was at the hands of one trying to treat something he knew nothing about and it was not pretty. I agree with what FJ posted, keep his thoughts in your mind. You mentioned MS-have they totally ruled that out? A friend of ours was losing vision on & off very much like you, she ended up in Florida seeing drs that finally were able to dx her. Poor thing went to tons of drs here & in Dallas to no avail. Her Mpm found ths group in Florida where she lives. Vision loss was her first & foremost symptom.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/26/2009 4:44 PM (GMT -7)   
Thanks everyone for your love, hugs, and support! It really does help. Right now I'm trying to just take things one day at a time at most, but still, I really haven't sleep since Weds. I was so miserable - upset, hurting, tired, couldn't see well - this morning that I didn't even go into the lab today (good thing, because I would have had to drive home an hour and a half through severe thunderstorms, and even possible tornados this afternoon & that would have been nearly impossible in my condition). I'm hoping that once I see the other docs in the next two weeks, we'll have some more answers & that I will be a little less scared. Hopefully.

Skeye

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 6/27/2009 9:52 AM (GMT -7)   

Skeye,

I am so sorry you are in so much pain & losing your vision.  I will say extra prayers for you that the docs find out what's going on & can treat it quickly.  The only encouragement I can offer is that maybe it will be similar to when I was diagnosed with Chiari.  I was seeing more & more black spots & less and less of what was really in front of me and it was progressing much faster than typical, but after they did the craniotomy/laminectomy, I got all of my vision back 100%. :)   I will hope that they can find something like that in your brain and that you will get your vision back good as new.

Either way, I know you are a really strong person, so just keep pushing on for answers even when things get hard.  We are all here to support you.

 

hugs & prayers,
Frances


Moderator -- Depression Forum


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/28/2009 3:05 PM (GMT -7)   
Hi Frances,

Thanks for the support! I sure hope that they can find something like that for me as well!
I've been having a really hard time the last few days. Everything is becoming much more "real." Fortunately, I haven't been thinking about the far off future, but even so, my heart just feels so heavy - like it is weighing me down. I'm just so terrified & am feeling very empty and alone, as there really isn't anyone around that I can talk to about this (other than everyone here, of course!). I found myself not returning home after getting out of work yesterday, because I knew that I couldn't deal with the silence at home. So instead, I went driving (with a box of tissues) and returned a couple hours later with a new soft, comfy blanket (comfy things are stress relief for me) & some toys for our new office kitten at work (She's an adorable little orange tabby. I felt bad for her because she didn't have anything to play with. I had tried to make her a toy earlier in the day, but there are only so many things that you can make into a kitten toy at a vet's office & it was pretty lame! And playing with her & the new toys last night made me smile).

I'm hoping that this will all become a little easier/less emotionally painful once we are able to get my depression under control. I'm between psychiatrists at the moment (and of course, my psychologist is away for the next several weeks - what wonderful timing!). I really hope that this new guy can help me. So far, my depression has been just as resistant to treatment as my pain has been. I think I've already exhausted most of the major classes of anti-depressants.

I honestly just don't know what to do. Nothing makes me feel better (a good part of that is thanks to the depression, though). I'm just so scared about this CNS thing, and that I'm never going to be able to get my pain under control, or even get the slightest relief, now that we've exhausted the opioids. I wish I could just get a good night's sleep & clear my brain. But, I'm afraid to do that too, because once I finally do fall asleep (whenever that may be), all I have are horrible nightmares. I'm sick of waking up screaming and/or crying, whether it is from pain or dreams).

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/28/2009 3:47 PM (GMT -7)   
(((((((((((Skeye))))))))))))

I wish I had words that could comfort you like that blanket and the kitten, but I'm glad you had contact with them both! Yes, I do know how they make you smile. That's just how I feel. My weekly visit to the Humane Society is the highlight of the week. I already bought another box of milk bones and more kitty treats and they're on the front seat of my car.

Curl up with your animals...I wish I was there to hug you in person!

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 6/29/2009 12:08 AM (GMT -7)   
Skeye:

I am several days behind on reading everyone's posts, so I just read yours today. I am very sorry for all you are going through. I just wanted you to know that you will be in my thoughts and prayers!

I think I told you in the past that my husband has been suffering with eye problems as well since he was a kid, and over the last couple of years the gradual progression has sped up a lot, and it has us quite concerned.

I just wanted to let you know that you are not alone. Please keep posting as you feel up to it as I am concerned as well as curious, and I will do the same.

Lorie

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/29/2009 12:57 PM (GMT -7)   

Hi Skeye,

Not sure you saw my post on this thread or not. I have to ask you if you have been tested in anyway to rule out MS and if so what kind of testing was done.

I am not trying to scare you by no means but, right now we have a man here at our house doing some work and he mentioned his wife has MS. I got to talking to him and I asked what her first symptom was. Visual disturbances, losing her vision, some days worse than others. Because of the drs taking so long to be more agressive in dxing her and treating her the eye graphs showed an 80% decrease in vision in one eye and thats permanent. The dr readily agreed if he had been more aggressive he could have headed off alot of the vision loss.

This is the 2nd person I know of that was losing their vision and the final dx was MS. Like I said I am not trying to scare you, but it sure seems like a long time and no real answers. I just was thinking of you.



Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Swveral other health issues just not enough roo to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 6/29/2009 1:26 PM (GMT -7)   
Skeye, HUGZ and lots of support and prayers with them...
just keep us posted as you can and I'll keep my fingers crossed for you...
((((((((((((((((((((((((((((((((((((((Skeye)))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/30/2009 4:17 PM (GMT -7)   
Hi everyone,

Thanks so much for the support & hugs! It helps more that you know! You all make me feel so loved! I'm really just exhausted. I saw the neuro-ophthalmologist today. He agreed with everything my primary ophthalmologist had to say, except he did say that he doesn't think that this is degenerative, at least not as of yet. He definitely thinks that there is something bad going on with my brain, but as of now said that I shouldn't be worried about the progression of this until we know what it is. That was definitely a relief, but I'm still really scared, because this is still sounding like something pretty bad w/ my brain. I actually don't trust this guy all that much though, just because of how he has treated me in the past & his attitude (or should I say ego?!). It sounds like we are going to get a spinal tap for sure after I see my neurologist next week.

Susie,
Yes, I did see your post, I've just been too emotionally & physically tired to write much. Thanks for the heads up about MS! MS is actually quite high up on the list of possibilities & has been so for the last several months. I actually do have all of the ocular symptoms of MS, but my last MRI (January) didn't show any brain lesions & as far as I know, I still don't have any neurological symptoms, other than my eyes (we'll find out for sure next week). It's definitely something that I'm worried about, but at the same time, I'd almost be happy to know what this is. The spinal tap that we are going to do should be able to give us more information about the possibility of MS, as well as a few other things. When the doc was dictating his note today, he kept referring to me as a "diagnostic mystery." Tell me something I don't already know! turn

hugs,
Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/30/2009 6:37 PM (GMT -7)   
Skeye,
I just want to say you ARE loved here! I'm glad you feel it!

I haven't read your thread to me yet (saving the best for last :-)) but I wanted to post to this one, too.

((((((((((Skeye))))))))))

PaLady

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 6/30/2009 7:28 PM (GMT -7)   
Spinal taps sound awful but lets hope it gives you some answers and the hope of some treatment, my heart is with you, skeye
golitho
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