no news isn't good news

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skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 5/13/2009 7:53 PM (GMT -7)   
Well, it took two weeks of phone calls, and an attempt to schedule an appointment 'just to talk,' but I finally know the results of the conference that my ophthalmologist presented my case at. Nothing. No thoughts, ideas, or theories were generated. No one knew what to say, or what to do. Their only suggestions were things that we have already tried & have failed. I am definitely disappointed. I was really hoping that the conference would generate something helpful. At the very least, I was hoping for a name of someone else to go see, even if it meant traveling to the other end of the country.

I have really got to stop getting my hopes up; it makes me fall that much harder.

Skeye

Chartreux
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Date Joined Aug 2006
Total Posts : 9622
   Posted 5/13/2009 8:05 PM (GMT -7)   
Awe Skeye, so very sorry about this set back, maybe the people at the conference need more time to
think your case through, so try not to give up yet, their always making break throughs in medicine.
Wish I knew what else to says to you..
well wishes (my hugger is hurtin) and a shoulder for you to lean on...
Hope sometimes is all we have and I'll give you some....
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 5/13/2009 8:24 PM (GMT -7)   
Skeye, sorry to hear the news. This does not mean that there is no hope. It just means that the avanue of the conference that your doctor went to is closed at this point. There is still hope. We cannot afford to lose hope as that is what keeps some of us going on a day to day basis. Are you still at home or did you head back? Are you going to take classes this quarter or term? I know you stated something in another thread but I can't remember. You still have a goal. I will keep you in my prayers.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/13/2009 9:08 PM (GMT -7)   
((((((((((((((Skeye)))))))))))))))

I'm so disappointed for you. I know you were holding high hopes for that conference, but as fatherjohn said that is only one avenue.

I wish I could wave a magic wand and heal you. But I still believe there will be something to help you in the future. But I know for now how bummed you must be.

Even if your career has to take even more detours please, don't give up!

More hugs,

PaLady

angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 5/14/2009 2:42 AM (GMT -7)   
Skeye always try to emember that with each new sunrise there brings new hope.
Many many new treatments,surgeries,prostetics,vaccines,and even cures were born overnight! None of us knows when one of those bright new young med students up and coming will be our savior.
 
Keep searching and researching and anything you find that is in trial or being tested even in lab for the moment can be a virtual answer for any one of us.
 
We can never allow ourselves to lose hope for then we tend to stop searching and pushing for the answers in treatments.
 
I have took lots of things I have found via the internet and research to the table for me and my Docs to try,some have helped and some have failed but none of them have left me worse for the ware and thank goodness I have a Doc willing to allow me to do these things. He has been my answer to prayers for years in his actually instigating me and pushing me to be hands on with my own treatment in trial and error some times.
 
I truly believe he is the reason I do as well as I do and I know he is the reason behind my always pushing each one to search out someone willing to allow them to be a part of their own process of treatment options.
 
I am sorry you have been let down again but keep trying to hang on to the faith that this may be your day,your answer,your hope in finding what will work.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/14/2009 2:51 AM (GMT -7)   
How frustrating and utterly disappointing for you Skeye!!! Big hugs from me too. What do these great brains do at conferences??? You'rd think they'd have some sort of ideas for you. Lets hope there is still some spin off it and one of those doctors might come up with something yet to help. Fingers crossed, golitho

anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 5/14/2009 3:41 AM (GMT -7)   
Skeye, I am so sorry that you have been let down and disappointed. But you can't be too hard on yourself. Any one of us would be feeling the same way. Please don't give up on hope. I know the major let downs hurt deeply. I wish that I could give you a soft hug to help comfort you. Try and keep your head up. We are all there to give you any support that you need.
Anice

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/14/2009 6:32 AM (GMT -7)   

Dearest Skeye,

It is so disappointing and devastating to us when we are hoping for an answer!  I am sending you big soft gentle hugs!  Like everyone says, don't give up hope, everyday they are finding new ways to treat!  We are all here for you!

((((((((((((((((SKEYE))))))))))))))))))))))

Lots of Love and blessings,

Patti


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/14/2009 2:30 PM (GMT -7)   
Thank you, everyone, for all of your replies! I know that they come from the heart, and they really mean a lot to me! I haven't given up hope completely, although at times it is hard to hold on to. But at least I have you all here to support me! I can't thank you all enough for that!

Skeye

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 5/14/2009 2:44 PM (GMT -7)   
Skeye,
I'm not as good at writing these sorry posts as the others here and I really don't know what to say to you at this point. I'm so sorry there wasn't anything new found. I know you were really hoping as was your fan club here. Everyone here loves you SO much and to see you suffer with no answer time after time just breaks our hearts! I don't think there's another person here who is more loved and prayed for than you. I just know that some how, some where someone will be able to figure out your mality. Is that the right word? I'm sorry if it isn't, it sounded right??? You know what a clutz I am with words and as silly as they sound some times, they are from my heart! So my little swimmer sister, you hang in there as I know you will because you are one of the brave ones!!!!! BIG SWIMMER HUGZ!!!
Your Big swimmer brother>
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis somewhere in the Far East and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" on their way to the Middle East w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 5/14/2009 3:32 PM (GMT -7)   
Skeye

There is always hope, and we are here for you, I know your disappointed, but remember Doctors "Practice" medicine! they just haven't got it down quite right yet, and they just don't know everything quite yet, that is why they still "Practice" Hang in there Skeye and don't give up hope! And we are always here to support you!

I wish you only the best!

White Beard
  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


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/15/2009 10:46 AM (GMT -7)   
Skeye

I'm so sorry it was a let down for you. But everyone is right, someday somehow you will find answers. I will always believe in that.

You will be in my prayers

Laurie
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/15/2009 7:58 PM (GMT -7)   
Pete, White Beard, & Laurie -- thanks so much for your thoughts & support. It really means a lot to me. I'd write more, but I'm having a hard enough time typing this as it is.

Skeye

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/15/2009 8:10 PM (GMT -7)   
Skeye, just checking in. I would like to think that things are going good for you but from your last post, it seems things are tough. You may be down right now but not out. I know that someday you are going to be helping an animal and you can think back and remember that the obstacles you faced made you stronger becuase you did not let them win. I do hope you are getting so relief and are able to relax during your break.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/15/2009 8:20 PM (GMT -7)   
Hi fatherjohn,

Yes, things aren't so good at the moment. One of my docs decided to start me back on Elavil for depression, sleep, and pain. After a long struggle I reluctantly gave in. I've been on it before, for a month last year, & I got some nasty side effects from it & it didn't help my pain at all. So I was in no rush to try it again. But he thinks that perhaps starting at a higher dose will avoid some of the side effects. I was warned that I would be pretty out of it for the first 3-4 days after starting it. That was an understatement! I've barely been functional. Tonight is the first night that I feel somewhat clear-headed, but my eyes are still not functioning well. What a way to spend my "break" (why does something like this always seem to happen on my breaks, preventing me from enjoying them?). If things don't improve by Monday morning, then I am calling my doc & getting off of this! I can't function this way! I sure hope that I can get up for work in the morning!

Skeye

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/15/2009 8:34 PM (GMT -7)   
I am so sorry to hear all that you have had to go through the last week or so. I was counseling a young woman at the school that was through something similar with the depression and what she related was the lack of being able to feel emotions and just feeling so flat all the time. My heart goes out to you. I do hope things start getting a little better.  

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 5/15/2009 8:53 PM (GMT -7)   
Skeye
I sure wish they could do something for you, don't they have any ideas as all as to what is causing the problem, have they completely ruled out MS? You are sure in my prayers, your just to young to be having all these problems that your having!

I do wish you the best, and hope that you start feeling better!

White Beard
  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


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 5/15/2009 9:23 PM (GMT -7)   
Fru- Fru-Frustration!(Song from Soft Cell: Nonstop Erotic Cabaret)....urggggggg...and on top of all that, don't you have finals coming up?

Boy I loved college, but the frenic pace, the almost bipolar emotions, the extreme stress...nah...don't like that so much. So I empathsize...and no, until done for summer, there is no such thing as spring break when you study the sciences...I had vindictive (that's the nice word I'll use here) who would give us exams Monday and so Friday was not alone, the other profs did the Friday before...(even worse on Thanksgiving Holiday)...What classes are you taking this semester? Are you taking a lot of lab courses? (those things, when your not feeling well, woops...broken glass everywere!)

I'm sending you good thoughts...and cyberhugs...
"The earth laughs in flowers"


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/15/2009 10:32 PM (GMT -7)   
Skeye,
I've been thinking of you, too. I wonder why the choice of elavil? There are so many newer choices that may have fewer side effects for you. I can't remember - maybe there's a reason, or you've already tried them. But if you haven't, and you continue to get significant side effects without decent symptom relief, I would definitely ask your doctor to try another one.

Hope you are able to rest a bit.

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

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/16/2009 7:04 PM (GMT -7)   
Skeye:

I, too, am sorry that you have not yet found the answers that you are looking for and need. My husband has had problems with his eyes (things looking distorted, aching pain, burning & uncontrollable tearing, and declining vision originally with things up close, but now with distance as well) dating back to when he was a child, but his parents never took it seriously and always accused him of making it up, which lead him to feeling ashamed by it and like he needed to hide it.

It took me many years to finally get him to seek a diagnosis and treatment, and despite extensive testing by eye doctors as well as neurologists, both a have eluded us. The distorted vision is accompanied by or causes other physical symptoms such as dizziness, nausea, and a feeling that things are closing in on him as objects will appear much larger or closer than they really are, which leads to a feeling of anxiety and panic. Doctors have considered and based on symptoms have treated him for allergies, infections, vertigo, panic/anxiety attacks, all to no avail.

As time goes by, the symptoms seem to be progressively getting worse, but we, too, are at a loss as to what to do next. I hope and pray that you will soon find the reason for and solution to your condition.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/17/2009 7:32 PM (GMT -7)   
Fatherjohn, thanks for the well wishes! Today & yesterday have been a little better, but I am still pretty exhausted from the elavil. It has been 5 days now. I sure hope I feel better tomorrow morning, because I need to drive an hour & a half, and I can't do so in my present state.

White Beard, thank you as well for the wishes & keeping me in your prayers! I sure hope it helps! Although we don't have a diagnosis, we do have a bunch of "theories" which include inflammation of the nerves and blood vessels behind my eye, a virus lodged in my optic nerve & brainstem, vasculitis of my brain (specifically the optic nerve & brain stem), and others. Everyone has their own variation of a diagnosis. MS has not been taken off the table entirely, although all my docs feel that it is unlikely. We are waiting till I see the rheumatologist next month & if he doesn't have much to say, then we will get a new MRI and look more closely into MS.

Undone, I like your song! Frustration is right! Fortunately, I am finished for the semester! We got out pretty early this year, as I've been done with exams for over a week now! You are right about spring break! Break, what break? This past semester I only took two courses, as I participated in an internship program that required us to be on site ~30hrs a week, and so the internship was worth a lot of credits. But otherwise, I usually have two lab classes a semester. I've done 3, but that was just insane, and with the progression of my eye problems, I know that I couldn't handle that now.

Palady, my psychiatrist decided to put me back on elavil because he has pretty much run out of options. We have tried & retried antidepressants from each major class, except the tri-cyclics, and I don't seem to respond to any of them. When I was on elavil in the past, I was on a low dosage, the standard dose for treating neuropathic pain, but now he has me on much much more, as the main reason that we are using it is for depression & sleep. If it helps with the pain, that would be great, but since it didn't work in the past, I'm somewhat skeptical. I am still thinking about stopping it, because the side effects (other than the sedation) that I am already getting are hard to tolerate. But I'd like to at least give it a try for several weeks, as I know it will take that long before I see any results. They tell me that the side effects decrease over time, though. Hey, at least I am getting some sleep! I don't think that I've slept this much in years! I just wish I didn't feel so drop-dead sleepy the entire day!

Bluejet, I am sorry to hear about your husband's eye problems! It seems that the eye is a very sensitive, very complex organ. There is still a lot that we don't know. I've been searching for an answer for just about two and a half years now. My only results so far have been baffled doctors and some "puzzle-piece" findings that we don't yet know how to put together! I hope your husband finds an answer!

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/17/2009 10:14 PM (GMT -7)   
Skeye,
I was thinking about you today when I happened to flip the tv channel onto TLC and it was the middle of a program about a young woman. I didn't catch all her symptoms and the beginning of her story, but no one could figure out what was going on . She had symptoms that seemed like lyme but the tests had been negative.

Some doctor took her into a special program and the first thing he did was give her some intensive antiobiotic therapy, and place her in a hyperbaric chamber for a substantial period for 30 days in a row. Her symptoms didn't improve until the 30th day. I think it was then they still hadn't diagnosed her, and the doctor said the blood test that is usually done for lyme disease is only 50% accurate, so he did a urine test to look for whether she had ever had the lyme in her DNA - or something like that and that test was positive. So she at least learned what she had to deal with.

I'm not saying you have lyme! I was just thinking about how do we get you on tv?!! Like on the day Oprah has Dr. Oz on? Maybe get your doctor to write to Opran and Dr. Oz and get you out there....,you have so much to offer the world with what you want to do. I know it's off the wall, but you were on my mind as I watched that program.

Hugs!

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/18/2009 6:12 PM (GMT -7)   
Palady, your post made me laugh! I do seem like one of those cases you would watch on tv... The only problem is that we don't know the answer, so currently all the viewers would be disappointed. I wish I could have Dr. Oz take a look at my case. He probably doesn't know all that much about what I have going on (since he is a cardiothorasic surgeon & all), but he seems so knowledgeable. There is something about him that is quite reassuring!

Speaking of Lyme disease, that was actually something on our list of differential diagnoses in the beginning, as Lyme can cause eye problems. I think I've been tested about 5 times since, and I have always been negative & I didn't have any other symptoms, so we ruled it out. I've had Lyme several times in the past, so supposedly it is still in my body, just dormant.

Thanks for thinking of me!

Skeye

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/19/2009 6:52 PM (GMT -7)   
Skeye, I can really relate to the frustrations of anti depressants. I've only tried two and both had the most horrendous side effects, I just dont want to try another. I found the positive effects don't really work for me, the nerve pain is still there, some pain became background but certainly not all so I still needed pain meds...anyway I've made the big decision to take more pain meds and no anti depressants. I hope they do work for you, my doc said it could take three weeks for side effects to settle down and positive effects to take place, best of luck. I also drive distances both for work and children's sport committments so also couldn't handle the foggy head. Too dangerous on the road. Plus lecturing at uni I kept going blank with information I knew really well, became too embarrassing!!! I'd rather be sleepy from pain relief but still able to focus with the help of coffee than foggy and dangerously sleepy on anti-ds. Hope it works out for you, golitho

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/19/2009 7:45 PM (GMT -7)   
Thanks golitho! I doubt that the elavil will do anything for my pain as well. I was on it for over a month in the past & it did not help. I was also on cymbalta for several months & got no relief from that as well. Right now we are basically trying to find an antidepressant which works for me for treating depression & insomnia, so that is the main goal with the elavil. For whatever reason my body doesn't seem to respond to antidepressants either, as I have tried many and never noticed much of a difference in my depression. I just get side effects. It seems like all medications give me either substantial side effects, or don't work at all. There just doesn't seem to be an in between.

Skeye
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