MS results are back

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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/4/2009 7:01 PM (GMT -7)   
Got my MS results back today: negative! It's great news & I am thrilled and relieved, but at the same time part of me is disappointed, frustrated, and a little angry. Don't get me wrong, I did NOT want MS, I would never wish that on anyone, but I want an answer! It's been over 2 1/2 years, and things only continue to get worse! I want to know what is going on & I want to have actual, real treatment options.

So now we're back to not having a clue what is wrong, other than that something is wrong with my brainstem, among other components of my eye. The current thinking is that it's either some yet unidentified CNS or ocular/brainstem disease, in which case it's just a wait & see game -- wait & see how this progresses & hope for clues, or it's something like reflex sympathetic dystrophy. Except no one knows if RSD can happen in the eye & my neuro-ophthalmologist, at least, doesn't even want to entertain the idea. I need to speak with my primary ophthalmologist, so that we can try & come up with a new plan. He had mentioned trying a series of injections to my pcp (for the pain) & the meds the neurologist put me on did nothing for my nystagmus, so I need to pick his brain about that too. I wish he didn't take so long to return phone calls! It usually takes him a week if it isn't anything urgent. I called last week, so two more days of waiting, and then he gets a pleasant reminder phone call. I know it takes him so long because he is at odds about what to do as well. He probably dreads hearing from me as much as I dread calling him.

In other news, I got my Kindle today! I had to come home to see my osteopath & there it was, sitting on the kitchen table waiting for me! I just spent the last two hours fooling around with it & already downloaded a bunch of books. I think I was a little too ambitious (considering my current reading abilities), but I just got so excited! I tried the text to voice feature (which is what I will be using most of the time) & it's not bad. It's about the same speech style/pattern as the reader that I have on my phone, for translating text from books, magazines, etc into audio. No comparison for a human voice, but pretty good nonetheless!

I hope tonight finds everyone well!

Skeye

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/4/2009 7:47 PM (GMT -7)   
Skeye, I know its frustrating still having no diagnosis, but really it is very good news you don't have MS. It is such a horrendous debilitating disease. Please thank your lucky stars. I'm sorry I have to go to work and can't give you a longer reply. But BIG HUGS and feel positive. Someone out there has to find an answer fo you surely, best wishes and my heart goes out to you for your frustration again and again without an answer, we're with you Skeye, golitho

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 8/4/2009 8:23 PM (GMT -7)   
Skeye
I know your test results are bitter sweet, I do know what it is like to have something wrong and not know what it is. But hang in there. I am glad you don't have MS! I do hope the Doctors can eventually find out what is wrong and give you some relief.
 
I wish you only the best!
Have fun with your Kindle, I have researched them they sund neat, I would not mind have one myself!
 
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


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/4/2009 8:35 PM (GMT -7)   
Skeye,
Like you and everyone else, I'm so relieved it's not MS. But I sure understand your disappointment at not having an answer. A thought occurred to me as I was reading your post - and that is a precise, accurate diagnosis probably isn't available for many people. A lot of times doctors just treat the symptoms and never find out the root cause. I know that's not what you want to hear, but guess I'm just hoping they can find ways to help with your pain and vision and discomfort, even if they can't find a diagnosis just yet.

I still have that gut feeling that's positive about you!

I'm so glad you got the Kindle! At least that's one treat you can celebrate!

Hugs,

PaLady

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 8/4/2009 10:30 PM (GMT -7)   

Oh Skeye,

I'm happy and sad at the same time for you!  I have to agree with what PALady said!  Hang in there honey, they will figure it out someday soon! 

I too am so glad you got the Kindle!!  ENJOY!!

XXOO
Patti


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 8/4/2009 10:31 PM (GMT -7)   
Skeye...

I completely understand how you feel. It is so frustrating to have something wrong and not know "what" that is. I'm glad you don't have MS; but feel for you in that you still don't have a firm diagnosis.

Everyone I know is getting the Kindle. I'm a little bit jealous, I must admit!! But I'm excited for you...have fun w/ it!!

Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); MSIR (15mg/6x day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/5/2009 11:10 AM (GMT -7)   
 
Afternoon Skeye!!!
 
     *huggs* What a releif!!!! I am so glad. But also... more confused. You have so many of the same exact symptoms. Im left scratching my head.  shakehead   You must be very cofused as to which path to take now. *huggs*
 
     WooOOT! For the Kindle! I hope you got a leather cover for it. rememebr to sign up for the amazon daily. And IMHO USA Today and The New York Times are the best two formatted for the kindle. I decided to stay with NY Times I like the formatt better. The recipe look up is very handy , keep you little plastic key cover for when you are cooking. And remember if you come across a book that wasnt converted right send them an email to the address on your "screen saver"the one with the email adress will eventually be one of the screen savers that cycles through. Usually only takes a few days for errors to be corrected. They are VERY good about refunds too.
 
*warm huggs*
     dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 8/5/2009 11:35 AM (GMT -7)   
Awe Skeye, I'm glad and frustrated for you too...
It's wonderful that it's not MS, but could be bad if it's something else...
have they any clues??
I'll keep you in my thoughts and prayers...
You'll get answers, sometimes it takes time, but you'll get them...
HUGZ
and lots of soft hugz
((((((((((((((((((((((((((((((((((((((((((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 8/5/2009 2:38 PM (GMT -7)   
Thanks everyone! I really am thrilled that it's not MS. It's just that I'm frustrated, because I was hoping that all these tests would give us some more guidance. I know that there are lots of people out there, like me, without a diagnosis. And I suppose it doesn't really matter, as long as you can treat whatever it is. Just the problem is, we haven't been able to & don't know how to treat this! I think it's also a matter of acceptance. I know we've discussed this topic before, but I don't think that I can fully accept & come to terms with this until I know what it is.

Thanks for all the tips re: the kindle, Dani! I'll have to do some more fooling around with it tonight. I just got out of the lab & I've gotta run to go have pizza with my aunt & uncle now!

Skeye

Smoochie
Regular Member


Date Joined Jun 2009
Total Posts : 71
   Posted 8/5/2009 3:33 PM (GMT -7)   
Skeye,

I understand exactly where you are coming from, they can't figure me out either and it drives you nuts. I just want to know what the heck is causing me all the pain, I want to know if it is hereditary, are my children at risk? all of these things are important and I know what you mean about not being able to treat it right, because they keep trying and they keep missing with me. But of course the great news is it's not MS which would have been devastating I'm sure! I don't know what a Kindle is but I am assuming it is a type of electronic to download books and such onto and it sounds wonderful I am so glad that you got something fun to have and explore rather than just worry about all the pre-existing conditions. I hope they will find out what is wrong with you and hopefully soon best of luck to you, hugs to you and ejoy the pizza and more importantly, the company :: )))
 


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 8/6/2009 2:59 PM (GMT -7)   
Skeye, I wanted to wish you good luck on your Fall term and hope your course load is light...
Keep us posted with up dates...
Lots and lots of soft hugz...
Hope the pizza with your aunt and uncle was fun!
((((((((((((((((((((((((((((((((((((((((((((((Skeye)))))))))))))))))))))))))))))))))))))))))))))))))))))))
yur friend,
Chart

One of the bigger cats is finally starting to play with the kitten (Dimitri), so that's a good start...
**********************************************
* 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 8/6/2009 3:45 PM (GMT -7)   
Thanks Char! I still have a month before I start, and my real summer vacation starts next week! Tomorrow is my last "official" day of work in the lab (although, I'll probably be making the trip up to campus once a week to make up for some of the time I missed having left early, come in late, etc, more times than I can count for doctors appointments. I've actually stayed an extra week already, but I still feel I owe more time). I've been working extra hard this week, and I'm really paying for it. I'm in so much pain today!

I can't wait to be done! I usually love working in the lab, but I am just so burnt out. I'll still be working on weekends, but for me, that job is more fun than it is work. I really need to relax. Hopefully I can do so. I have at least one, if not more, doctors appointments every week & a couple are several hours away, so that will make things more hectic, but that's nothing new! The weather better get nicer, though. We've had a rotten summer so far -- cold, cloudy, and wet. I guess you can't count on anything in New England!

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/6/2009 11:57 PM (GMT -7)   
Skeye,
We're getting some real heat and humidity here in the Great Lakes this weekend - maybe it will make its way to you! I agree, summer weather has been more like fall!

So maybe the time you have off will be like summer! I hope you get some good R&R!

hugs,

PaLady
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