Reg optha appt today...

[dkdean]

And my eyes seem to be healthy....but he feels that there is (based on my vision symptoms) something going on with the optic nerve and says that his scans will only show part of the optic nerve.  The part where he suspects demyelination is occurring is directly behind the eyeball and doesn't show up on the retinal scan.  So, he said to see what the Neuro-Optha says and to certainly get a 2nd opinion as my vision changes are not consistent with migraines of any sort.  His thinking is that the visual changes are very consistent with those of MS.  But, he is not a neurologist and didn't see my MRI--he's going on his experience and 'gut'.  So, we shall see.  He did say that he didn't think Chiari Malf. would be causing the vision changes.   Neuro-Optha (Dr. Hirsh) on Monday morning and 2nd opinion on Monday afternoon (Dr. Fahey w/Neurologic Associates?).  The optha said not to expect any answers any time soon and that it will prob take a while to get an official dx.  I need some sort of shrugging emoticon!!  

Kim

[dkdean]

Carolyn--Thanks.  I am trying to balance staying as normal as possible right now with not knowing what is going on--and not wanting to make things worse.  I will hold off a bit until I know more.  

[*Stormy*]

Honestly, I hate to say it but not running right now might be crucial..I believe it is a trigger. With me too, I think I was having weak & spastic muscles b4 I really realized there was a problem and the high impact of running I think really did my body in. After running (or step class) I would get a headache, have sort of a haziness in my vision, and I would get really out of it..couldn't think straight and couldn't concentrate. I thought it was just me and that it was normal!! Crazy!

[dkdean]

Carolyn--Thanks...I'd upped my workout regimine in the weeks before this all happened. I went running (just .5mile) last night--cautiously.  The weather is just perfect right now for running and I'd planned a 10K this month.  But, I woke in the night with a sore neck and it 'cracked' near the base of my skull when I rolled....not something that has happened before and could totally be due to the fact that I haven't done any running in the last 2-3 weeks, but it made me wonder about the jarring action of running had done something.  Not trying to feed into symptoms, but not wanting to hurt my body or cause more damage since I don't know what's going on at this point.  Hoping you'll be able to run again :-)

[*Stormy*]

I was a runner but unfortunately I think those days for me are gone. I do know of some ppl that after surgery are able to run again. I am fairly confident that my symptoms snowballed due to the running and weightlifting that I did...I wasn't feeling well but everyone told me it was just stress so I ignored my body and went back to working out. Withing 3 months my symptoms progressed to include leg involvement. I still have a lot of joint and pain issues so I wouldn't even dare thing about it at this point. It is too bad though b/c the sun is out...
Carolyn

[dkdean]

And, I would assume that most people dx'd with CM are not runners/joggers?  

[dkdean]

My mom is going to come down to the appts with me on Monday.  Her MRI referral is already sent, she just needs to schedule the appt.  It's been ready for a while, but she figured they wouldn't be able to tell her anything new.  Now that she knows about CM, she is more willing to get it looked at--in the hopes that there is something more that can be done...as opposed to the constant pain she is in.

[*Stormy*]

I am very interested in the link as well....even though most NS won't admit to it, if you look at how many people have it in their family, there has got to be a link somehow. Even if it's just a genetic defect in how the back of the skull forms...

Please keep us posted on what they find with your mom! I hope you get some answers on Monday!
Carolyn

[dkdean]

Thanks....I am really hopeful that the Neuro-Optha can give some feedback, but I am preparing myself for not getting more answers.  I figure I will see what the drs say on Monday....if the eyes are still not right, I will go ahead and make the appt with Dr. Di in Cleveland since I am confident he understands Chiari!!!

On a side note--My mom has been very interested in the Chiari link....she's had MANY of the challenges that Chiari people seem to have, so she is going to bring it up at her appt.  Her neuro hadn't mentioned it, but did want an MRI done based on all the symptoms.  So, we are kinda wondering about that family link.

[*Stormy*]

Hi Kim

Well I would think since you have dual issues that they would probably focus on the MS first as it is well know to cause vision problems especially with the optic nerve. However, I wouldn't let them push aside that fact that Chiari could be playing a part in this as well. So many of us have a wide range of vision issues. The frustrating part is b/c it is due to high ICP, a lot of eye drs can't actually see the damage. That is what makes me curious, a lot of times with MS they can see it....so I think there is def a good chance that it could be the Chiari and the building up of pressure. So I am glad to see that you are getting more opinions... How frustrating it must be for you to have both these conditions!!

LOL I agree, I think MedHelp should supply us with a variety of icons so that we can express our emotions!!
Carolyn

[selmaS]

Hi Kim....I know it is soooooooooooo frustrating to get to the bottom of all the different issues we have....and the wait for answers is a big problem too!

Keep us posted : )    

"selma"