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My Continuing Eye Saga....

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Posted 2/1/2008 4:02 AM (GMT 0)
Hey Rhonda,
Oh my stars! I miss a day or two and i can not believe what is happening with you. Please know that i am thinking of you and praying that everything turns out for the best. You are in my prayers.
Love,
Lynn
Posted 2/1/2008 2:54 PM (GMT 0)
I'm glad you got in a bit early. Do keep us informed.
Posted 2/2/2008 12:37 AM (GMT 0)

Rhonda,

Holy cow!! I was just popping in tonight, haven't been here in a while, and couldn't believe what I was reading.  I just want you to know that I will keep you in my prayers and thoughts.  I am still in limbo, same ole, same ole, I will be getting my yearly brain MRI in April.

Jen

Posted 2/2/2008 3:07 AM (GMT 0)
Hey Everyone!

Well i have some fantastic news!! I had my mri's done yesterday and got a copy of the report today...then a call from my neuro's office that confirmed....all is clear!!! NO LESIONS!!!!! So my little white spots i thought i was seeing must've been just that...little spots that mean nothing! So now i have the spinal tap on Wed and we'll see how that goes. As i told a friend earlier today, i suspect this is all going to lead to no new info, but at least i'll have it rechecked and i'll know that much. As for the ON, i'll just have to see what the eye doc wants to do about it. Something else interesting about that....my reg sched'd appt with my neuro is in March. Given that i now have a dx of ON and havne't actually seen the doc (saw his nurse prac) in about a year...u'd think he'd want to set an appt soon to review my results and talk about the ON. NOT. I was told to keep my appt in March and to let them know if i needed them any sooner...this is after i reminded the nurse i still had that spinal tap on Wed. I'm not so happy about this so i'm thinking i may just go back to that eye doc with my test results in hand and let him lead me to a good neuro. He offered to do that and asked me to stay with him as my eye doc, so i'd feel really comfy doing it. Anyway, there it is.

Thanks so much for all the continued support friends! I will come back and update after the spinal. Again, u have no idea how much u'r presence here with me has meant.
Posted 2/2/2008 3:16 PM (GMT 0)
I think your idea about asking your eye doctor about a neuro is a good idea. While March isn't THAT far away, given all that is going on with you, it seems like getting in sooner rather than later is a good idea. I'm glad your MRI was clear...but clearly something is going on!
Posted 2/2/2008 3:52 PM (GMT 0)

Hey sweetie,

I am here again to show my support.  I too am so glad that you have a clean MRI but I am so frustrated for you that there seems to be no explanation for what is going on.  I have followed your suffering with this for quite some time now and for your sake and your family's I so want you to get some relief. 

You deserve to feel good and to enjoy life.  You on occasion suffer from severe pain several times a week. Just know that we are all here for you for as long as you need us.  I am praying for answers and a resolution.  I very wise person told me, "Pray for what you want, work for what you need."  Go after those answers sweetheart. 

Much love always,


Posted 2/2/2008 5:05 PM (GMT 0)

Hi Rhonda,

 

I know how thrilling yet puzzling these kind of results can be. I am so, so happy and relieved that your MRI was clear, and hope your LP results follow suit. The ON is an objective sign for your docs to follow, and I’m just glad you have this eye doc who is willing to pursue this aggressively and refer you to a better neuro. Living in limbo with such severe symptoms is awful, and I am fervently hoping that this latest round of tests leads you to answers and effective treatment!

 

The waiting is tough…so you hang in there, lean on your friends and family, and eat plenty of grape popsicles.

 

Sunny

Posted 2/6/2008 9:10 PM (GMT 0)
Hey Everyone

Just a quick update. I had the spinal tap today and it was pretty unpleasant, tho not horrible by far. I did get the headache IMMEDIATELY after sitting up from the tap, but they refused to do the blood patch. We were told they'd do it on request as long as we made that clear before the proceedure, but that wasn't the case. So i assumed they'd let me have it when i sat up and immediately had the headache...not so. They want me to try OTC meds and then if that fails to work i should call my neuro and he'll order the patch...and then i have to come back and they will do it. Geesh! I'm staying down. As long as i dont' get up...and don't turn my head too quickly either!...i have no pain! It really is true...if u'r flat on u'r back u'r safe. They told me i'd hear something within three days..so either Friday or Monday i hope. I"ll come back and post then. One other thing...when the doc guy was reviewing my orders he read outloud that they are looking for ms or pseudo tumor?? That's the first i've heard of that. Thanks for reading friends...i'll be back soon to update.
Posted 2/6/2008 9:26 PM (GMT 0)
Glad to hear that you are home. I had never heard of them doing an immediate blood patch beofre you mentioned in an earlier post. Just stay flat on you back as much as possible until tomorrow and you should be fine.
Posted 2/6/2008 10:07 PM (GMT 0)

Hi Rhonda,

 

I’m so sorry you’re dealing with that nasty headache, and I hope it resolves soon and by itself, so you don’t have to do the blood patch. When I had the headache, I really stayed down except for drinking lots and lots of fluid, including caffeinated beverages. It was a pretty boring time, but boredom is so much better than that horrible pain!

 

I wonder if the pseudo tumor they mentioned is pseudotumor cerebri? That’s what came up when I googled, at least. Sorry, I don’t know anything about this, but it looks like it’s pressure caused by too much CSF in the head? Some of the more common symptoms are  headache and vision probs. Here’s a couple of links where I found this info:

 

http://www.pseudotumorcerebri.com/

 

http://mplus.nlm.nih.gov/medlineplus/ency/article/000351.htm

 

Hope you feel better soon!

 

Sunny

Posted 2/7/2008 3:32 AM (GMT 0)
Rhonda,

 

You certainly didn't need that stupid headache.  So sorry your suffering.  I hope you took Sunny's advice and it helped. 

 

Sending you thoughts, prayers, and hugs.

 

Debbie

Posted 2/7/2008 6:09 AM (GMT 0)
Dear Rhonda,
I am thinking about you. You do so much for so many here. Thankyou. Rest up (or down I should say) and keep us informed.
Annie
Posted 2/7/2008 1:54 PM (GMT 0)
Rhonda,

There's a reason for everything and it's fantastic that you've been so supportive of us. I hope you don't have MS but I also know that not knowing can be very grueling in itself!...

As far as your eye , they do sale some soft patches at walmart with adhesive already on them for the eye area. This will not stop ON but id does keep you from moving your eyeball around which can ease a bit of the pain. In case you don't have this already i thought id tell you about them . For me they are great!

I sincerely hope that this isn't ms but I think your eye doc does know what he'd looking at. Usually when they go forward and talk about medicines or how far we've came in learning about MS, they are trying to prepare a patient for at least what they really feel they are looking at. If it does show lesions and they feel it is MS, the iv steriods will lesson your pain in a matter of minutes to half of an hour. Amazing really just how fast the steroids clear the eyes up. (in most cases).

Also Rhonda, when i was first dx'd I was told that the onset if the hardest part. I laughed at the later as symptoms began to compound. I dont laugh anymore as Ive now found alot of coping things and medicines that specificall relieve things that otherwise we'd just have to suffer through. I'm hoping that your neuro is a great one and if he's not , or you feel he's not as on top of things as your eye doc, remember this is YOUR body, give it the best you can.

Wish I could hug you too, We are on the edge of our seats as you should be getting results very soon!

May the Lord be with you.


thanks

kiera
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