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-   -   Lost. Frustrated. Concerned. Confused. (https://www.neurotalk.org/multiple-sclerosis/183156-lost-frustrated-concerned-confused.html)

NurseNancy 01-30-2013 05:53 PM

dear anyadee,
i'm sorry you're going thru all this.
i wish i knew more about getting medical care without insurance.
are you eligible for any govt aid?

maybe your local MS Society could help. that might be worth a call.

i think taking someone with you to your pcp visit is a good idea.
i'd just ask your dr why he won't give you a referral. maybe it's a $$$ thing but at least he should give you an honest answer.

i hope you get the help you need.

AynaDee 01-30-2013 07:26 PM

Quote:

Originally Posted by NurseNancy (Post 952625)
dear anyadee,
i'm sorry you're going thru all this.
i wish i knew more about getting medical care without insurance.
are you eligible for any govt aid?

maybe your local MS Society could help. that might be worth a call.

i think taking someone with you to your pcp visit is a good idea.
i'd just ask your dr why he won't give you a referral. maybe it's a $$$ thing but at least he should give you an honest answer.

i hope you get the help you need.

Thank you!
Contacting the local MS society for some help/direction is a great idea and I'm going to look into that tomorrow.

and I was also thinking today to take someone up with me and pay for the appt. with pcp that we are face to face and he can tell me personally.
I would love an honest answer to all of this nonsense.

jprinz99 01-31-2013 04:44 AM

FYI_ if you think you should be seen/followed by a opthalmologist (sp?) may I suggest calling the Lions- they can get you into a opth MD or neuro-opth (and it is based on free/sliding scale fees). You may want to look up the info/contact person on the State Lions affiliate on the web. Here is the US home page:
https://directory.lionsclubs.org/

BTW: My neuro opthalmologist told me that nystagmus, diploplia, and utoffs were things that can often occur as a reult of the Optic Neuritis. The optic nerve gets inflamed or damaged, this can result in all sorts of myriad vision/eye issues. After one of my 'bad" flares that also inlcuded ON it took a good while for things to calm down. I still get the jumpy eyes with double vision & washed out colors now and again.

If you really just want a referral and your PCP won't provide it, may I suggest a new PCP or pop into an urgent care center and ask that MD to give it. OR you could contact the ER doc and tell him you need the referral.

Either way- I wish you well and welcome to the club nobody intended to join (but we are a great bunch!)

tkrik 01-31-2013 11:33 AM

Anya - Yesterday, the nystagmus came back again. I've only gotten a 2 day reprieve from it. UGH! So this morning I googled nystagmus in MS and found this article. I thought of you and decided to share this link. I can certainly share some of your frustration. For me though, it is only eye pain and a jittery eye that affects my vision but it has been going on since the end of December. Based on this article, it appears that what I am experiencing is saccadic intrusions which, from what I gather from the article, these are not caused by the optic nerve but a lesion in the brainstem or cerebellum, which I do have. I thought it interesting because we always associate eye trouble in MS as being an optic nerve issue but, based on this article, that doesn't seem to always be the case.

http://www.msfocus.org/article-detai...?articleID=382

AynaDee 01-31-2013 03:00 PM

Quote:

Originally Posted by tkrik (Post 952868)
Anya - Yesterday, the nystagmus came back again. I've only gotten a 2 day reprieve from it. UGH! So this morning I googled nystagmus in MS and found this article. I thought of you and decided to share this link. I can certainly share some of your frustration. For me though, it is only eye pain and a jittery eye that affects my vision but it has been going on since the end of December. Based on this article, it appears that what I am experiencing is saccadic intrusions which, from what I gather from the article, these are not caused by the optic nerve but a lesion in the brainstem or cerebellum, which I do have. I thought it interesting because we always associate eye trouble in MS as being an optic nerve issue but, based on this article, that doesn't seem to always be the case.

http://www.msfocus.org/article-detai...?articleID=382

:hug:
Thank you so very much for sharing that article!
Super awesome, educating read that was :D
And im so sorry that you have to deal with nystagmus again, its definitely the opposite of fun :(
I was contacted today by the catch program and they have found me an ms specialist! Hooray!!! Now in order to schedule yhe appt. My pcp has to sign that freaking referral! Why is this man refusing for me to get help?
Also, more good news..
I have an appt with an opthamologist on the 22nd, another hooray!
And thanks again tkirk, I will now be able to talk to these doctors about all of my issues using proper terminology!
You all are just a blessing to me!
Thanks for all the support and information!!!:grouphug:

tkrik 01-31-2013 03:17 PM

Quote:

Originally Posted by AynaDee (Post 952963)
:hug:
Thank you so very much for sharing that article!
Super awesome, educating read that was :D
And im so sorry that you have to deal with nystagmus again, its definitely the opposite of fun :(
I was contacted today by the catch program and they have found me an ms specialist! Hooray!!! Now in order to schedule yhe appt. My pcp has to sign that freaking referral! Why is this man refusing for me to get help?
Also, more good news..
I have an appt with an opthamologist on the 22nd, another hooray!
And thanks again tkirk, I will now be able to talk to these doctors about all of my issues using proper terminology!
You all are just a blessing to me!
Thanks for all the support and information!!!:grouphug:

It's not fun at all. It's so annoying. I'm going to try ice on it and see what happens. It certainly can't hurt any. I'll let you know how it goes.

AWESOME!!! I'm glad they helped you find an MS dr. As for the PCP, maybe he has the "Almighty God" complex and feels he can handle it. To me that doesn't make sense. You could always tell him that you want the referral for continuity of care and can't understand why he is refusing you that. Use the words continuity of care. Trust me, that means a lot in the healthcare industry. No one wants to interfer with continuity of care. That would be a very bad thing.

I'm glad the articles were helpful to you. They were to me too. The one today made me call the neuro. I just want to rip my right eye out but I know that if I did I would end up in the psych ward for doing so.:D

Good luck! Definitely update us on what is going on and how you are doing.:hug:

tkrik 01-31-2013 03:58 PM

Update - Ice was NOT the answer. It made things worse in regards to my vision. I think I froze my eyeball.:D:D:D It actually made it hurt more. So, I wouldn't recommend doing this. ;)

AynaDee 02-01-2013 12:53 PM

Quote:

Originally Posted by tkrik (Post 952992)
Update - Ice was NOT the answer. It made things worse in regards to my vision. I think I froze my eyeball.:D:D:D It actually made it hurt more. So, I wouldn't recommend doing this. ;)

Ahhh ohhh no!!!:eek:
Frozen eyeball cannot possible be good! Im glad you let me know as I have been contemplating putting a cube on thr left one for relief.. I shall not try this method! Hang in there! We're in this together! :hug:

Erin524 02-01-2013 02:41 PM

Cool damp washcloths might help, sometimes even warm damp washcloths might help but yeah, it's not a good idea to put an ice cube on your eyeball.

tkrik 02-03-2013 12:41 PM

Erin - I didn't put an ice cube on my eyeball.:eek::D I used an ice pack wrapped in a towel. It was still too cold. I'll have to try a warm cloth and see what happens.

How are you doing Anya? Are your eyes any better?


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