optic neuritis?

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Gretchen1
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Date Joined Jan 2007
Total Posts : 3459
   Posted 10/24/2009 9:38 PM (GMT -7)   

Ok I am not sure yet, but I think I might be starting a nice flare of optic neuritis.  My right eye is hurting (dull pressure ache) and my vision is noticably more blurry in that eye.  It is not horrible, but if this is O.N. it is going to get worse before it gets better. 

Does anyone have any experience here?  So far I am only taking advil, but it is not helping much.  I don't have anything else at the moment.  My usual pain is managed with advil, baclofen, klonopin and rest.  This is starting to make me sweat.  I took a klonopin so I can maybe sleep tonight.  Obviously I will let you know if this gets worse.

Ok thanks for any help/support.


Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/24/2009 9:51 PM (GMT -7)   
Schedule an appointment with your doc ASAP or go to a walk in clinic tomorrow.

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 10/24/2009 10:24 PM (GMT -7)   
Hi Girlfriend!

No, I have no experience with this but did want to come by and give you a warm HUG! I'm sorry this is happening to you...you certainly do not need nor deserve this. I will say extra prayers for you tonight. I still believe in miracles!

Warmest HUGS,
Chutzie
Children will not remember you for the material things you provided but for the feeling that you cherished them.
Richard L. Evans

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 10/24/2009 11:00 PM (GMT -7)   
Gretchen,
So sorry to hear that. I don't know anything about optic neuritis either. Have you had it before? I didn't know if it was part of the MS. At any rate, it's so scary when something as precious as vision is affected.

Maybe Skeye will see this and have something to add, although I haven't seen her post much lately.

Skeye - I hope you're ok!

((((((((((Gretchen)))))))))

PaLady

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 10/25/2009 7:57 AM (GMT -7)   
Thanks for the support.  There is no reason to run off to the doctor.  That is the good news with MS.  There are very few emeregencies.  If this is a flare, then it is almost predestined.....umm how to explain.  There is no stopping the damage or disability that comes with a flare.  I can do those lovely steroids, but that only helps me manage the discomfort, it is not an actual treatment that lessens the severity of the damage.
 
I am a little depressed as this means that dreaded "progression".  I know I have a progressive disease but I happily live in denial about getting worse.  Sigh.
 
So anyway, it is about the same this morning.  There is definitely something going on but so far it is moving slow.  The steroids are pretty miserable in and of themselves and I won't do them unless this gets really bad.  The steroids consist of 1,200 mg of IV infused solumedrol per day for 3 - 5 days.  That much steroid definitely cools the inflammation but it makes you crazy too!!  Hehe. 
 
Ok here is your MS 101....it is autoimmune.  My t-cells just randomly decide to attack the myelin that covers that axons of brain cells, optic nerve cells, or spinal cells.  Myelin is the fatty coating of nerve cells that allows the electrical impulse to travel quickly and effeciently along the axon (nerve cell).  When the myelin is damaged the electrical signals don't get through or shoot out sideways for confused or slow signals.  It is a bit like stripping the plastic coating from an electrical wire; if you do that the electicity won't travel along the wire the way it is suppose to.  After a while, if enough myelin is damaged, what you have is clumps of axons that actually die and no longer send any signals.  These places are called plaques are lesions.  The location of a MSers lesions dictates for the most part what their symptoms are like.
 
Most of the time MS is a relapsing remitting disease.  A person has periods when their progression halts and they just have to deal with the current level of brain and spinal damage.  Then they can flare and that is when there is an immune response going on and more damage is occurring.  The perons will then add to their collection of residual symptoms and adjust to any new disabilities this damage causes.  There are four types of MS; Relapsing remitting MS (RRMS), Primary progressive MS (PPMS), Secondary progressive MS (SPMS) and progressive relapsing MS (PRMS). 
 
I have had optic neuritis before.  I know what it is like although this time is a bit different.  The good news is most of the time, your vision comes back to a certain degree.  It is only like 20 - 30 percent that there is some permanent vision damage.  So I will hope for the best.
 
Sorry this is SO long!  Thank you anyone who guts it out and reads all this.  I guess I feel better just telling people about MS.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


pixie6976
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/25/2009 10:27 AM (GMT -7)   
I really dont know what to say. You are my hero for going through this, I know I couldnt handle it. I know that RA is nothing like the intensity of what you are going through, but I know it wears on your mind to have something constantly eating away at you and always wondering how long it will be b4 there is nothing left. My thoughts are with you and I hope that things get better.
(((((((((((((Gretchen)))))))))))))
Degenerative Disk Disease, 3 deteriorated and 2 of those are also herniated in lumbar spine, also 2 herniated in C-spine. Psoriatic Arthritis, with the sholders, hands, left hip, and knees affected the most. Major anxiety and depression issues. Wishing I could learn to live with this.
 
Currently on Elavil 25mg... what a joke!!!


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/25/2009 12:28 PM (GMT -7)   
Gretchen,
Thank you for explaining. I think educating eachother about our struggles is a real plus here. And it helps us understand others with similar issues.

I know that some people take LDN for MS. I didn't know if you did, or if it would be of any help. I sure don't want to annoy you with lots of questions, it was just a thought. I know a member here was taking it to help with pain, but not MS related.

At any rate, I'm glad you're here posting, and I do hope the flare calms down very soon.

Hugs,

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 10/25/2009 2:43 PM (GMT -7)   
Gretchen
I will second everything PALady said!  I am glad that you posted and I do hope that you continue to always do so! "Your educating us", might help you in other ways too, by us understanding what it is that is going on with your disease and how it affects you, it also  helps us to get to know you better, and to be able to bettter help you, and  to understand what your needs really are! Even if it is just needing a sympathic ear,  or a loving hug! Which if nothing else there is always an abundance of here, and it is always heart felt and sincere! 
 
I wish you well Gretchen my friend, I hope this flare-up is short if not sweet, I hope it is not to bad! Good Luck to YOU!
 
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, 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 10/25/2009 3:15 PM (GMT -7)   
Hi Gretchen,

I'm so sorry to hear that your optic neuritis is starting back up again. It's no fun, I know sad! Part of the complex series of problems with my bad eye is a condition that mimics optic neuritis. The only difference is that my condition is caused by an abnormally large amount of cerebral spinal fluid in my optic nerve sheath secondary to trauma/nerve & vascular damage rather than inflammation. It basically causes the same symptoms, since it compresses the optic nerve. That's one of the reasons that we looked so closely into MS; I have essentially all of the ocular symptoms of MS, plus some.

How long do these bouts usually last for you? I hope not long! It's scary to have sudden decreases in vision, not to mention pain. I wish I could tell you what helps, but I don't know of anything (if you ever find out, let me know! turn). No meds: pain meds, steroids, nerve meds, etc, etc, etc have ever helped me. The only thing that I can think to suggest would be warm or cold compresses. I don't use either very often, as I've found that 99% of the time they do nothing, but sometimes when I'm feeling really helpless I'll try them.

I wish I could be more useful! If you ever need/want to talk, you can always reach me by email -- even if I'm not making it on to HW regularly (thank you, senior year of college). (((((((((Gretchen))))))))))))). I hope you're feeling better soon!

hugs,
Skeye

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 10/26/2009 6:05 PM (GMT -7)   
Hey everyone,
 
I have talked to my beloved neurologist.  She is amazing.  She listened to me and agreed that I am definitely in a flare.......sigh.  Oh well.  It was a nice long remission.  She pushed for the steroids.  I HATE them.  So, she talked me into it.  I will do 5 days of IV steroids (solumedrol).  A home health care nurse will come (probably wednesday) and put in a temporary IV port and I will be infused with 1,200 mg of steroids each day.  The side effects are not a lot fun.  Hopefully this will cool the inflammation and I will get some of this vision back.
 
I will keep you posted. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 10/26/2009 6:40 PM (GMT -7)   
Good luck with the steroids! They are no fun indeed!

hugs,
Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/26/2009 8:00 PM (GMT -7)   
Gretchen,
We'll be here if you need shoulders, kleenex, whatever! I hope the steroids at least restore your vision.

Take care!

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 10/26/2009 8:27 PM (GMT -7)   
Gretchen

Solumedrol the IV tear jerker! Does it affect you that way? Actually it really is a miracle drug, but with such a double edge! The side affects are so often horrible, but the benefits so fantastic! I wish you well, we are all here giving you all our suppport!

Hang in my friend! I wish you only the very Best!!!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, 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


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 10/26/2009 9:33 PM (GMT -7)   
Thanks everyone.  Whitebeard......you are so funny!  No thank god the steroids don't make me an emotional mess.  I know they make some people psychotic!!!  For real!  I always feel better, after a few sleepless nights, and some HORRIBLE heart burn, metallic taste, the painless stripping of calcium from my bones.  I get all this wonderful energy and then................the happy steroid givers STOP coming!!!!  There it is .....the worst part.  Then you crash like a two-bit meth addict!!!!  Oh the horror!!!! 
 
My vertigo has me staggering like a drunk.  My eye has lost its ability to see color.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/26/2009 10:55 PM (GMT -7)   
So sorry to hear you're going through such a flare, Gretchen. I can totally relate t the steroid rush and then the fall. I also get the hot flashes and heart palpitations to add to the thrill. Wondrous for RA too but equally hard to come back down from. Will it stop the neuritis in its tracks?
I'm sending you big cyber healing HUGS and really hoping the steroids do their thing and you come out the other side to tell the tale, best wishes, golitho

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/27/2009 12:15 AM (GMT -7)   
((((((((((Gretchen))))))))))))

PaLady

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/27/2009 7:50 AM (GMT -7)   
 
   Dear Gretchen,
 
     Good morning *warm huggs* How are you feeling this morning? I hope a little more at ease, thou I fear not. We are okay here. The girls are busy as ever and miss rosie will see her very first formal musical at Pope Joy Hall. Shes an excited little bee, and I hope she doesnt get into too much mischief!!
 
      I am sorry your vision is getting progressivly worse. Thou I am glad that you are going to start up a treatment, it seems such a double edged sword  shakehead   *warm huggs*  When I read this ~~>
 
   "the painless stripping of calcium from my bones"
 
 my heart aches for you. I am ever so sorry you have to endure so much, just to retain some sort of function.  My bones being stiripped, when severe, brings an odd persistent burning / ache to specific parts of my body.  The inflammation ever so intense.   I wish you didnt have to endure through any of it!! Please know you are in our hearts and  prayers here, while you go through so many days/week  of treatment *warm huggs*
 
*huggs*
  dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 

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