new finding, scared, no terrified

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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/10/2009 10:16 PM (GMT -7)   
As some of you may know, my focusing & overall eye function in my bad eye has gotten somewhat drastically worse in the last couple weeks. Like always, I put off going to see my doc (I know, not smart). The eye seemed to be doing a little better for a couple of days & I thought that I knew what he would say, which was nothing much that he could do, so I held off. Well, I went to see him today & to both of our surprise, I have a new symptom (or actually several, all rolled into one convenient package, or something like that). I just wish it was good news... Apparently, my new symptoms are consistent with brainstem involvement, so whatever is causing my pain & other symptoms is most likely affecting my brainstem too. We still don't know how this all fits together, or what the cause is, but at this point, none of the choices are great. Fortunately, I was able to sneak up to my neurologist's office right after seeing my ophthalmologist. They are in the same building, so I decided it was much easier to stop by & make an appointment with her than call & get their awful voicemail system, and it turns out that my neurologist had just finished seeing patients & when the receptionist went back to ask her if she could squeeze me in sometime within the next couple weeks (she was booked for months, and although I hadn't seen her in several months, I had been a patient of hers for a while) she just said to come on back & that she would see me right then & there! I think I might have scarred the receptionist, as I'm sure I had a pretty terrified, horrified look on my face.

We were able to rule out MS, but although that was on the table as one of the differentials, neither my eye doc, nor I thought that I had MS, as my presentation would be very atypical & I don't have any other symptoms, plus my recent MRI didn't show any lesion. But other than that, there isn't anything more we can say for now. It's just going to be a wait & see game. I see my eye doc in a month & the neuro again in the summer. Still on the table are a bunch of nasty autoimmune inflammatory diseases, & viral infection. From my understanding, because I now have 2 distinct areas affected, it becomes more likely that my pain & everything is stemming from a systemic disease rather than my injury, although that still may have set things into motion & contributed.

I'm really just terrified! My doc is usually very cheerful. I've been seeing him for over 20 years, and I can't remember him not being somewhat upbeat, even when he was serious, or telling me something bad/that I didn't want to hear. But today, today, he looked really concerned. Now I'm hoping & praying even more than before that we get some answers next month when my doc goes to his conference! I could really use some support tonight!

Skeye

Post Edited (skeye) : 3/12/2009 8:51:28 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/10/2009 10:43 PM (GMT -7)   
Dear Skeye,
Oh, I wish I could be there to hug you! I'm so sorry your news today wasn't good. I am going to visualize that at this medical conference some doctor is able to put all the puzzle pieces togetehr and stand up and say hey, I know what's going on!

In the meantime, you have my shoulder to cry on. And I send healing hugs.

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

PaLady
I just have this feeling in my gut that you are going to find an answer!

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 3/10/2009 10:48 PM (GMT -7)   
Wow Skeye

I do know what being in medical limbo land is like, but so many neurological diseases like that are so difficult to diagnose let along treat. And the not knowing is the hardest part about it! You have my empathy, I do hope you will get some answers soon! You will be in my prayers and I wish you only the best!
Good Luck to You
White Beard
I'm Retired USAF, went back to school and became an RN, and now am on full disability!
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


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/11/2009 4:42 AM (GMT -7)   
I'm so sorry for you're bad news Skeye. It must be horrable to have to waite so long and then, no answer again. Maybe with this new finding about your brain stem, it will be like another peice of the puzzle and your Doc might be closer to finding the answer, we can only pray he does. You don't deserve this and you've been so brave & tough keeping up w/ school, it's an honor to call you friend! God bless you!
Big Giant warm Fla. Sunshine Hugs coming your way!
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 every 2weeks . 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, one on the aircraft carrier USS John Stennis in port in Japan and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. I am one proud PaPa! 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 3/11/2009 3:30 PM (GMT -7)   
((((hugs)))))

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/11/2009 4:59 PM (GMT -7)   
More hugs, Skeye,

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


PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/11/2009 7:22 PM (GMT -7)   
Oh, {{{{Skeye}}}}
What about having your eye doctor trying you on an IV Antibotic? IV antibotic are stronger and get into the blood...
Just a thought that you might want to consider...
{{{{{{{{{{{HUGZ}}}}}}}}}}}
and keep us posted..
I'm glad they ruled out MS, I see my neurologist on 8 April....
more soft {{{{{{{{{{{{{{{{{{{{{{{{{{{{{Skeye}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

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


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/11/2009 10:25 PM (GMT -7)   
Palady, White Beard, Pete, Frances, & Char,

Thank you so much for all the hugs & support!! I'm trying my best NOT to think about this, as it really really terrifies me, thinking that something really bad might be going on in my brain. Despite my best efforts, it has been weighing down the back of my mind all day. I've just got to keep reminding myself that we don't know anything yet & that at least the rest of my neuro exam yesterday was normal & my MRI 2 mo ago didn't show anything horrific in my brain, although that's not to say that things haven't changed, as this is new since then. I don't think there is much more we can do or so for now, just give it time. I see my ophthalmologist again in another month & we'll go from there. My guess is that assuming this thing doesn't get spontaneously better within the next month (hey, I can always hope & dream!), the next step will be to go back & see another neuro-ophthalmologist. I'm just confused, since everything up until now appeared to have been the result of the injury, but now it is sounding more like a systemic thing. I did ask my doc about it & he said that it could very well be that I have something systemic that we may not have noticed for a while down the road & the injury, because it severely weakened my eye, just kinda gave it a window to attack. It is always possible that the two things are not related, although that doesn't seem likely. I'm thinking more like Pete & Palady, that this is just another piece of the puzzle.

At least I'm accustomed to waiting (although it doesn't make it any easier, or less frustrating). Two plus years and counting without any real answers. I sure hope you're right Palady & I am going to get some kind of an answer out of this!

Char, we never have tried IV antibiotics. We've done oral & ophthalmic antibiotics, but never IV. Lyme disease is another possibly differential, and I have had it multiple times before (and supposedly it never really leaves your body, just lies dormant), but I have been tested for that I can't tell you how many times since since this all started & every time I have been negative. In addition I've been on several rounds of doxycycline, which is also used to treat Lyme disease. I'm not sure if he thinks that this thing could possibly be bacterial, but it might be worth asking him about though. I'm open to just about anything. Good luck with your neurologist's appointment! I was shocked that I was seen yesterday! I never expected, nor asked to been seen then, I just wanted to make an appointment for a later date! The receptionist was the one that volunteered to check with the doc to try to fit me in later in the week! I was shocked to see the doc come out & usher me in!

Thanks again for all you support! I don't know where I'd be without you guys! Hugs to all!

your friend,
Skeye

Post Edited (skeye) : 3/12/2009 8:50:45 PM (GMT-6)


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/12/2009 4:43 PM (GMT -7)   
i wish you the best, blue skeye.

Post Edited (Pamela Neckpain) : 3/12/2009 6:20:32 PM (GMT-6)

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