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PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/6/2009 10:51 PM (GMT -7)   
I just wanted to send you a special hug. I read the post on the othet thread about your appointment today. I'm so sorry the news wasn't better, but I still have a good hunch for you. Maybe not a cure, but some answers and some treatment, but it may take awhile.

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

PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/6/2009 11:20 PM (GMT -7)   
I read your post also. Skeye, you need to move it up to the top of the
stack so everybody can know what's going on.

Having health problems is just not the best journey. It is our journey, though.
We try not to worry, but we do. Indeed.

Relax in your chair for awhile. I would serve you tea and ... a crumpet if
I could.

Take Care,

Pamela

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/7/2009 4:54 AM (GMT -7)   
Thanks Palady, and Pamela! Yeah, yesterday was a rough day for me, but I am still trying (that being the keep word) not to worry about it until we know more. It's just scary. They say it's either a virus that is lodged in my optic nerve, the nerves & tissue behind my eye, & now my brain stem; vasculits (probably autoimmune) that is attacking both locations; or a demyelinating disorder, probably MS. The good thing is that all my symptoms still seem to be localized. The bad thing is that it is progressing & we don't know what it is. Plus I had another doc's appointment yesterday, this one with my pcp, who is my PMS. I have been absolutely resistant to every opiod I've been on (and we're talking significant doses), and he told me that he doubts that I will be able to find relief from any oral medication because of my body chemistry. So now I have to decide whether to continue this "game" of meds for a little while longer, or to give up. He votes that I continue until we at least reach a certain level. Meanwhile, he is contacting a PM in the city that he met at a conference & who seemed to be really knowledgeable about cases like mine, where the patient is unresponsive to every effort to control their pain. Hopefully something good will come from that, although some of the things he was talking about (like ketamine infusions) really scare me.
All this when the semester is coming to an end & the work is reaching it's peak! Bad timing. Although there is never any good timing for this stuff.

Skeye

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/7/2009 7:46 AM (GMT -7)   
Awe Skeye,
wanted to give ya soft HUGZ and lots of them..
Is there anyway they could treat you with an antibotic (maybe an IV antibotic?)
behind your eye to see if that's would help?
I'll be hopeing and praying that it's not MS or an Autoimmune...
These things never do have good timing, sure would be nice if we could pick and
choose the days for when we want to feel bad, hopefully the work will keep you busy so
you don't have too much time to be scared, being scared is hard and we'll help you get
through this, just keep us posted...Here hold my hand and I'll help you through this....
{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{SKEYE}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland and Sjogren's

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


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 4/7/2009 9:03 AM (GMT -7)   
My Dear Friend Skeye,
It sounds like they are finally getting somewhere w/ your diognosis even if it isn't a good one. I pray that they find it soon and are able to stop the awful pain that has plaigued you for so long. Don't worry about the semester's ending as your health and finding out whats causing the problem is so much more important than schoolwork. I know it may not seem like that to you but school will always be there. Just thing how well you will do when they cure you and you don't have to work w/ such a handycap????? Hang in there, I believe they will find something soon! I really do!!!
Your Friend,
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! 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/7/2009 2:28 PM (GMT -7)   
Skeye,
I like Pete's advice! I just had this thought - maybe my hunch is that you will end up being a teaching case - a successful one - using some new approach!

And I know how important school is to you, but in my teaching career I also saw how students left and then came back for a variety of reasons. You already know that, but I do understand
it's tough to go through personally. We're here!

Hugs,

PaLady
p.s. Pete - I never forgot about you!!!!!

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/7/2009 9:59 PM (GMT -7)   
Palady, Pete, & Char,

Thank you so much! Your support & kind words mean more to me than I can put into words. Your friendship is invaluable!
I sure hope you are right Palady, I'd love nothing more than to be a successful teaching case! And I know, I need to get my priorities straight. School is just one area where I tend to hover around that fine line of accepting & denying.

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/7/2009 10:07 PM (GMT -7)   
Skeye,
School's not unimportant, so it's easy to understand your wanting to keep going without a break. And maybe you'll be able to! Wanting to do something with your life that makes a contribution to others is a wonderful goal. Just don't think that delaying it means it can never happen!

Hugs,

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/7/2009 10:08 PM (GMT -7)   
Skeye
There is nothing I can say to you that others haven't already said, But I still wish you nothing but the best, and do hope you can at least get some answers, I don't know about you but the not knowing is the real kicker! I can only hope a little prayer for you might help!

Good Luck to You skeye!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful 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


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/7/2009 10:25 PM (GMT -7)   
Thank you Whitebeard. I agree 100%, not knowing is almost worse than knowing.

Skeye.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/8/2009 10:07 AM (GMT -7)   
I'm resistant to opiods also, skeye. Maybe the pain pump will work. The medicine in the pump goes right to
the area of pain.I'll be seeing about that fairly soon. And then maybe I've become resistant. Or maybe I need
an increase. I don't know.

Because of your age and abilities, I too think that you may become a test case - a good one. Maybe you'll be
famous?

Heaven help everyone if I should become a "Test Case" The question in my situation: Just what kind of case?!

I have a question for you which is off topic. How did they MRI your shoulders? Did they give you complete
anesthesia or were you able to get out of enough pain to lay there for 45 minutes twice. One on each shoulder.

You have a will of iron. That's what will see you through with your winning attitude. yeah

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/8/2009 6:57 PM (GMT -7)   
Hi Pamela,

Thanks for your words of wisdom. To answer your question, I have been awake for every MRI I have ever had. I did take valium or something before the first one I ever had (a shoulder one), which was probably a good idea, because not only did I have to lie in the tube for 45 min, but they had to do a contrast injection into my shoulder. That was no IV contrast, it was a really nasty injection done right down into the joint, using fluoroscopic guidance. Not fun. Fortunately for you, I think they have mostly moved away from that now. The MRI technology has gotten better, so they can see much more detail without contrast. It also probably depends on what they are focusing on. The joint was of primary concern in my case(s). I only had the contrast for 1 out of maybe 6 shoulder MRI's that I have had (although I did have the subsequent ones done at a better hospital/imaging facility). I've never actually had both shoulders done at once, as I injured my left one twice, and then my right one several years later after the left had finally healed. No MRI is fun. It is hard to stay still for such a long period of time, especially when you hurt, but you'll get through it! Have you scheduled your next MRI yet? I really do think that it will help you out in the long run, as it will hopefully give you more answers, and knowledge is power. You can do it!

Skeye

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/8/2009 7:05 PM (GMT -7)   
Quick update. I talked with my ophthalmologist today. He had the radiologist re-read my MRI from January & the brain stem, which is the area he is most concerned about, looks okay. We can't say that nothing has changed since January, but we do know, that there was nothing horrific happening back then. It's good news, although bad because it still leaves me answerless & frustrated, and doesn't really eliminate any of the possible diagnoses. At this point, we are not planning on getting a new MRI. I did make another appointment with the neuroophthalmologist for just over 2 wks from now. I'm hoping he can tell me more about this neurological thing, but I kind of doubt it. I really don't want to see him again, as back in January he basically just sat there, scratched his head & said "I don't know. I can't explain it medically, nor can I speculate as to even a possible cause. Have a good life." In regards to my pain & other visual symptoms (minus the recent neurological stuff). I don't think too highly of him, but I am pretty desperate & I don't have much of a choice. There aren't too many neuroophthalmologists around, and he's already the 3rd one that I've been to & he was the best of the 3 (which does not speak highly of the others).

Skeye

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/8/2009 7:08 PM (GMT -7)   
Skeye
{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{HUGZ}}}}}}}}}}}}}}}}}}}}}}}}}}
lots of them, hope you get a break soon and have a low pain day!
Prayers
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 4/8/2009 7:42 PM (GMT -7)   
Sorry to hear about the setback Skeye, but for now that's all it is, a setback. I just know someone out there will have an answer for you. Keep the faith, I know it's not easy but with no news yet but I'm just sure someone will figure it out for you. No news is not bad news either. I'm sorry Skeye, it must be awful hard for you. If I could, I'd make it go away.
Your friend,
Pete
PS> Big HUGZ!!!
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! 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/8/2009 7:47 PM (GMT -7)   
skeye,

Are there three neuroopthamologist's in your town? I didn't know such a doctor existed.
But then I didn't know a psychopharmacologist existed until I went to one for a diagnosis of ADD.
Nothing new, eh?

Cerainly it's good news about the brain stem. I can guess how frustrated you might be. Keep working
for your good health and possibly for the good health of others. You're a pioneer girl. : )

Sometimes it's alarming to find out how little our doctors know. It's frustrating too as you have discovered.

skeye, I can't stay still in the MRI. I tried. I cried. Can I do it again? I don't know. Four hours hanging around
radiology with shoulders and neck on fire is hard duty. I think the shoulder pain is coming from my neck
involvment. They were able to MRI my neck. Maybe I'll give it a break for awhile.

(my neck?)

At your age, you need to give it every single thing, you've got. You've got many good years ahead. (Good ... no
matter which way it goes. Better if they can cure the problem, of course.)

Pamela Neckpain

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 4/8/2009 8:51 PM (GMT -7)   
Skeye,

Please accept a huge, gentle hug from me... (((((Skeye))))) I can only imagine your frustration now knowing what is wrong because you have no idea what or how to treat it. I will send special prayers your way for some peace and less pain in your life.

Hugs,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/8/2009 9:29 PM (GMT -7)   
Char, Pete, Chutzie, and Pamela, my friends! Thank you all so much for the support and love. You guys really keep me going. I can only imagine where I'd be today if I hadn't found you all. You all have touched me.

Pam,
I thought you said that they were planning on doing your MRI under general anesthesia because of the problems that you had with the last one. I don't remember, have you gotten the results from your neck scan yet? It is quite possible that your shoulder pain is coming from your neck, but it certainly wouldn't hurt to check them out if you can, just to be sure. I have faith in you! As I said, knowledge is power. The more you know about what's going on in your body the better.
And no, there are certainly not 3 neuroophthalmologists in my town! Actually none of my docs are located in my town. I live in a very tiny farming community. In fact it is the second smallest town in my state. The nearest "civilization," where most of my docs are 30 - 40 min away from my house, or an hour & a half from my school (it is in a "big" city though). One of the neuroophthalmologists I saw was at Columbia in NYC. The other two are at Yale. I'm looking at a 1 1/2 to 3 hr drive from my house.

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/8/2009 9:51 PM (GMT -7)   
Skeye,
It seems like you got some good news in that there weren't problems with the brain stem. But I like everyone understand the frustration of not knowing. And especially at your age you want to make your plans and there are all these unknowns.

Sending many hugs.

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

PaLady

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 4/10/2009 2:40 PM (GMT -7)   
Skeye?

((((((((((((((skeye)))))))))))))))

Just wanted you to know I'm thinking of you. I've been trying to keep up reading what's going on in your threads & wanted to send some hugs your way.

Ry

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/10/2009 6:20 PM (GMT -7)   
Thanks so much Ry! I know that it is a huge effort for you to post!! I really appreciate your warmth. I hope all is well with you!

Palady, everyone, many thanks!

Skeye
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