Eye Dr Appt.

[Rena705]

Well I went to the eye dr. yesterday...he read my letter while I was there...did some testing...didn't ask what sort of problems I am having with my sight...told me to come back in 2 weeks for a visual acuity test and then proceeded to give me a lecture on how good I have it.  He told me about a woman he knows that is in her 70's, still living alone, is in a wheelchair, living in a two story house, still bathing herself...blah, blah, blah...and when he finished I very nicely stated that she is very fortunate to have the stamina that she does BUT then I asked..."CAN SHE SEE?"  He got quite flustered and escorted me from his office and told me to make an appointment two weeks from now.

I don't understand it ya know?  I have been told over and over and over again that MS can be very different in the way it attacks people in different ways and yet we are constantly thrown in a pile and if our symptoms don't coincide with the person in the pile next to us then we must not have MS!  I thought a lot about this conversation afterwards and I have come to a few conclusions...I really hope that when I am in my 70's I have not been confined to a wheelchair and that I am still able to take care of my own personal needs but I also hope that I will be able to do these things with my own eyes and that the MS hasn't taken my vision because the closed minded dr's have decided that my MS is in-active and I am not on any disease modifying drugs!!!!

The eye dr also stated that it really is up to my neurologist to decide if I have MS and if had an MRI it should have shown whether I have it or not.  I responded that I had an MRI last November and it was unquestionably positive for MS but the neuro says that my disease is in-active.  He said that is her call to make but that if he finds that my sight has deteriorated since my last visit he will send this information on to my lying gp!  I asked him why he wouldn't send this information to my neuro and he responded that it would be unusual for me to deal with my neuro unless my MS was out of control and that the neuro's are for people with severe MS.  He went on to say that most "mild" MS patients deal with the neuro through their gp!!!  WTF is with that!  If I am in fact losing my eyesight to MS...that makes me a MILD CASE???!!!

So, here I sit with my rotten vision trying yet again to figure out what this bloody medical system is trying to do either TO ME or FOR ME...I think you can probably guess what my answer is!

An incredibly frustrated Rena!

[Rena705]

Thank you again for your offer of assistance db and I may take you up on it shortly!  I did  look up the site that I use through Capital Health and I will have the final exam by my Opthamologist and if he does write a letter I will request a copy for my records as well and I will move forward at that time.  Your assistance would be appreciated at that time and I hope that it will not come to this but I am not feeling particularly optimistic about it.  

I really appreciate you sharing all of the information with me my dear and I will let you know what happens next ok?

Rena

[doublevision1]

Rena, I so wish you could see my ophtha, Dr. Hugo Sutton.  He is based in Vancouver I think, but comes up here for a few days each month.  He is a GEM.  Early on, I kind of fell apart in his office, and he was so kind to me.  He is totally supportive of my treatment plan, is knowledgeable in MS, and has a very optimistic outlook that is so encouraging. He suggested I try homeopathy in addition to DMDs.  I have yet do to that, but am impressed by his open-mindedness.  Last month when I saw him for my driver's medical, he told his staff NOT to charge me for it! (the fee is about $120 - he cannot recoup this, as it is not billable to Alberta Health).  I have no doubt that if I needed him to write a letter on my behalf that he would do it in a heartbeat.  Perhaps he offers some services in Edmonton too?  I have no idea, but you might want to look into it.

I know I've mentioned this a few times, but again, I would really encourage you to contact Capital Health regarding your concerns about not having access to DMDs.  There is a formal concerns process that is available to you.  You could write them a letter and include all that good info Quix has given you as supporting documentation.  

This would seem to me to be the best next step towards resolving this issue.  I believe that if you are seriously considering legal action, that any judge would look to see what steps you have taken through the available mechanisms.  And you would not need to pay a lawyer to access this process.

I know it's tough to keep up the fight.  But the alternative is to give up, and where does that get you?  

If you decide to do this, and would like some help with it, just let me know.

db

[Rena705]

You may be right Kathy...I just feel like I have run out of fight ya know...I mean if the eye problems are due to the MS, the eye dr. said that it is out of his realm and that the MS will have to be treated which is why I went to him in the first place because I am not being treated!  He is of the headspace of "well you have ms and my friend is 70 and still living alone and she has MS so basically suck it up!"  I got the same story about his friend again yesterday and it tempted me to ask him how much he really knows about the disease other than what his "friend" has told him.  I am really sorry but this is one of those people that needs to live in the shoes of someone that has MS for about 6 months and then watch him change his mind!  Who the h*ll is he to tell me to suck it up and get used to it!  A******!  Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!
Rena

[Fluffysmom]

NO!  There's a big D for dips h i t on that ophthamologist's forehead!  

If the LGP and EN blackballed you, and the ophthamologist joined their party, I think I'll see if I can borrow Ada's cane and blueball them!  I wonder if the censors will blank that out?

I'm sorry you've had to go through yet another disappointment. There just has to be a way to get you some help!  When you get your feet back under you (after once again having the rug pulled out from under you), maybe it is time to find a lawyer.

Big hug,

Kathy

[Rena705]

Yeah...I thought I would finally get some help but I guess not...what a moron I am beginning to feel like...I keep trusting and hoping and I keep getting the shaft...maybe it's the big S for Sucker on my forehead?

Love you,
Rena

[spastic]

Dab Nabbit!!!!  I am so pissed off at this lack of care you get from your Dr's and I just added another Dr to my list of ones getting the cane!!!  Honey, I was so hoping he would help you today and I know you were too. Sweetie, I am so sorry this happened yet again to you. I was just about to go to bed when I seen you had posted and I wanted to write a quick one to you.  Now I will be dreaming again of going to Canada but this time it wont be for the fun it will be for cane'ing your Dr's *****!!!  But I guess we could have some fun too :)

Love You Bunches,

Ada

[Rena705]

Well...is there really a doctor in my realm of life that can do anything to help me?  Is there a doctor in my midst that wants to help rather than hinder me?  

I DON'T THINK SO!

I saw my Opthamologist again today and to me it was a total waste of time!  I had the VEP done and when I tried to do it with my left eye it seemed as though I was looking through a lens dipped in vaseline and missed the majority of lights.  Other than that all they did was ask me to cover each eye and read the numbers and then I went in to talk to the "doctor".  He asked if anything had changed since I saw him last week and I told him that "no, nothing has changed, I still can't see." He began giving me a lecture on the misuse of the English language.  He said that I should say that "I can't make out fine detail rather than you can't see" and I told him no, I can't see!  He said if I had a blindfold on then I could say I can't see but otherwise I should be saying I can't see fine detail!  I said no. I can't make out shapes on the frigging tv...is that what you would call fine detail?  He then said that he wants me to come back and see him in 4-6 weeks and if at that time nothing has changed he is of the belief that my problems may be related to MS.

I asked him if I do come back in 6 weeks, would he be willing to write a letter stating that he believes that it is my MS that is causing the problem?  He promptly gave me a lecture on how he is not a neurologist and does not profess to be one and therefore can not speculate that my vision difficulties are due to MS specifically but he can state that the decline in my eyesight MAY be due to MS!  What an A**!!!!

So that is my story and I am very tired and I am going to have a hot bowl of soup and try to watch a movie without "FINE DETAIL"!  ARRRRRRGGGHHHH!!!!

Rena

[Rena705]

UPDATE...Well, I am going to go back to the Opthalmologist tomorrow afternoon and I am not going to be quite so quiet this time...as a matter of fact, he is in for an earful!  As I explained in the letter to him I will reiterate that I am not on any DMD's and if he feels that my sight problems are related to my MS that a letter stating this has to go to my evil neuro, my lying g.p. and a copy for my own records please.  I know that he is going to find that there is a serious problem with my eyesight and that it not only affects me now when I am tired but in the middle of the day at times as well.

I am NOT going to give up and if as Quix says I find that I am no further ahead I will indeed get a lawyer.  This has gone on for far too long and I am tired of being abused.

I will let you know what happens as soon as I return from my appointment (and possibly a lawyers office).

Lots of hugs and wish me luck,

Rena

[spastic]

You know Sweetie, I would do anything to get you help, if it means me flying up there to your beautiful country and roughin up your neuro and cold cockin your lying gp with my cane, than so be it.  It would give me great pleasure.  Wouldn't that be a sight?  You are being abused by them and no one is going to do that to my Dear Rena!!!  UGH!!!!!  I just wish I was closer, Sweetie.  But I am gonna start a "Beat Rena's Dr's Up Fund" and start saving. Your Dr's **** me off so bad, Sweetie and I know what its doing to you and I would do anything to make it right for you.

Love Ya Sweetie,

Ada

[Rena705]

WOW...I didn't realize that you had such a hard time and it was so similar to my story...so sorry that you had to go through all that you did but I am glad that you stuck to your guns!

I had a VEP years ago when I was first diagnosed with MS and it was positive.

The dr. I saw is an Opthomologist and I agree that going back for a visual acuity test is a little bogus...I have a feeling that like Quix said, he may be communicating with the evil neuro before he makes any decisions and maybe I am being black balled.  

I know that I shouldn't take it personally but I do and it is really making me sad and angry and abused and  I have done nothing to justify the terrible way that I have been treated other than follow my last neuro's orders and if that is all it takes to get my "current" neuro' s panties in a knot, she really should grow up and get a spine in my opinion.

Anyway, I am going to make the appointment for the visual acuity test on Monday for the following week and I am going to demand some answers from this eye dr. and I also hope to get some copies of my test results from the last 4 visits.  I may have to find a new Opthamologist (if I can find one taking new patients) or perhaps be referred to a NeuroOpthamologist by my lying gp (db let me know that a new clinic is opening in my city in the fall).  Past that...I may just have to get a lawyer...and take a holiday far, far away from here where nobody knows anyone else and get a clean start.

Anyway, like they say there is always someone out there that is worse off than you are and right now I would like to focus my energy on my dear friend Spastic Ada.  She is going to need a lot of our strength backing her up to get through the next few weeks and I think that for me, focusing on her can only be a good thing.

I do appreciate you telling me your story though Santana and I will keep everyone posted as to how much situation is unfolding as it happens.

Lots of Hugs,

Rena

[santana8]

I don't understand what the eye doctor( I hope he was an opthomologist!)  is doing? The Visual Aquity test is just reading letters off of a chart, but good aquity doesn't mean you can see good!

When I presented to first the optomitrist, and then to FOUR different optho's I was complaining that I couldn't see good!    They all checked my  VA, eye pressure, eyes on fundiscopic exam, without dilating and with diating my eyes. They all said that my VA was 20/20 and my retina's and optic nerves were normal. Basically, they couldn't understand my complaints of not being able to see.

I am kind of stubborn, so I didn't let this stop me, afterall, if you can see good all of your life and suddenly one day you can't, believe me, you will notice the difference, and no one will be able to convince you that you should be seeing fine, given the results of your eye exam!

What I did was to ask one of them to give me a visual field test. He said, well, we don't just give anyone those test, they are very expensive! I said, I don't care how expensive it is. He said, your symptoms are out of the box, I mean you are saying that peoples faces look blown out to the right, and and that your stomache looks like it has a lump on the right side and your legs look wider and faces look distorted beyond recognition, and you also explain flashing lights, flickers,  and straight things looking wavy! Surley you can see how this might be hard to believe. I said because that is exactly what I am seeing!

He went on to say, after he and the nurse went outside of the room, no doubt to talk about what a nut case I was, you cannot sabatouge this test, and we will know if you are faking it. We have little tricks in there to let us know if you are delibritally trying to fix the test results!

I said, I don't care what kind of tricks you have, and I don't care if you give me the test, just give me something to make my eyes stop hurting! He didn't give me anything for the pain in my eyes, but he did give me the test!

Then I heard the nurse tell him to come there! Soon after that he came back in the room with a computerized result sheet of both eyes in hand. He said, there is something showing on here, an blind spot in both eyes called an inferior harmonious quadrantopsia.Which meant loss of one quadrant of the vision field in both eyes.

I said, no kidding, I told you I couldn't see!  He said we have to get you in to see a neurologist, you may have had a stroke!  Well, I didn't have a stroke, but what I did end up having show up was 10 white matter lesions scattered around my brain, and mostly directly over the main visual pathways!

He never even apoligized to me, and not only that he called the neuro that I chose instead of his choise and some how my appointment got canceled with no explaination.  So I found another neuro and optho and any other kind of specialist I needed outside that hospital system, because it was evident that I was being blackballed! Probally because of his own embarrasement!  It does happen, but you need to move away from any doctors who know any of your old doctors. This is the only way to get a clean slate and find  doctors who are not bias against you!

Also, you need to have a VEP. My VEP was also possitive!

Hope this helps you in some way!!

~Santana~

[michael1028]

  Hello, I am sorry to hear of your awful time at the eye doc. I am being frustrated along the same paths as well. I have no MS dx as of yet. I seem to have almost all the symptoms. I developed double vision in January and it seems to be the same today as it was the day it started. Both the MS guru and my neuro-optho say I have no MS. However neither can explain the double vision or any of the other ms like sx I have. I have a spot in my cord that is believed to have been there from a herniated disc that severely pinch the cord. They say it has only slightly changed in size since the two operations I had to fuse my spine. In the last two weeks the pain in my right eye has increased. When I contacted the optho today he will see me to measure my eyes again  on July 9.  This does nothing for the pain or answer any of my questions.
   I hope that you can get some better treatment options. I will say prayers for you that your furstration ends soon. I would be curious to hear how things work out for you.
All the best,
Mike  

[Quixotic1]

Well, that was the unforeseen problem.  The three doctors, or at least the neuro and the eye doctor communicated and "closed ranks."  I suspect the Evil Neuro told the eye guy that you are a whiner with very few problems and need to "put in your place."  Your neuro is effectively blackballing you.  I'm very sorry, but it shows the eye guy is not will to make his own judgments nor to stand up to a bully.

He, of course, is wrong.  

I think you are going to have to travel to as major center for your care.  I am so sorry you are caught in this.  I suspect your LGP will be even less use.

I do know that this sometimes happens and it is very hard to get out from under.  Do you have any complaint rights in the NHS?  It may be time to see an attorney.

Quix

[Heather3418]

You want to know about the weird thoughts I have had concerning your MS and not getting any disease modifying drugs to help with it?  I had thought in my wacky head, that you let all of us know which one of the DMD's you prefer.  Those of us that take the drug you choose could ship you 3 or 4 shots of that drug from our stash to you.  Between all of us and maybe people with MS that we know outside the MS Forum, could get you enough to take every day of the month.

Wouldn't that be heaven?  I know it's illegal, but you having to endure this life with NO medication is just proposterous...

I have never understood the doctor's denying you the very drugs that could prevent you from progressing in your disability.  It drives me insane to think about it.  

As always we are here for you...wishing we could do more for you.

Big Hugs,
Heather

[Rena705]

He said he didn't have time to do the vision acuity test (which I believe is just reading the letters on the wall).  
My hubby says that he has floaters but I don't know what floaters are!  he he  I have that little neon white sperm shaped thingy that swims out of my vision on my left side and the peripheral vision on my right side has a tendency to seem as though I am looking through moving gel...everything is sort of wavy.  However, he didn't even let me explain the sort of problems I am having so I don't understand what the heck he knows if I don't tell him what the problem is!!!

I did explain to him in my letter that I am VERY frightened about the vision loss that I have had even since I saw him last in November but that was about all the information he wanted from me.

I just feel like I am on a stupid merry go round and no one will help me stop the friggin thing!  All I know is that I can live with the pain in my legs and the problem walking and all the rest but I can't imagine losing my eyesight!  I am in tears every night as it gradually gets more difficult to see the tv and I just give up and go to bed.  This is scaring the cr*p outta me!  Now I have to wait another week to have this stupid eye test done....what else CAN I do?

[Fluffysmom]

Why the heck didn't he do the visual acuity test while you were there?  This guy is definitely a weed-whacker (someone so deep in the weeds that they have to whack their way out).

I've seen a ophthamologist twice, and my vision has changed some in the two months since my last visit.  He didn't not the floaters in my eyes this last time, though on the first visit's chart notes he had noted "posterior vitreous detachment" and wrote "floaters" on a check list of possible issues.  He told me to see my MS specialist, though I told him that I haven't been accepted as a patient yet.

What is up with these guys?  

My vision issues are small potatoes compared with what you're going through, but it still freaks me out.  I can only begin to imagine how frustrated you are.  I'd want to shake these jack as ses (eye doc, lying gp, and evil neuro) until their brains kicked into gear.

All I can do is let you know how much I care and hope and pray that help comes along for you soon.

Kathy

[Deb61]

I agree, your condition is not mild when it's causing problems with your vision.  Your doctors are playing with fire.  I know I'm speaking to the choir, but you should be on a disease modifying drug.  I wish that you had better treatment.

Deb

[mercyone]

I made a new appointment with another eye doctor, they said that the Opthamologist's are ususally the first to DX MS - I'd get another eye doctor. Gee aren't you glad you aren't 70 in a wheelchair etc. etc. what a crock of insensitive pooh.

Mercy

[Rena705]

I have to agree that calling MS mild is inappropriate especially by someone that isn't dealing with the obstacles that some of us have to deal with daily.  I really thought that this dr. that I have been seeing since the early 80's would want to help not just minimize the problem by telling me of the "other one that has it worse than I do"!  I do appreciate your support though my dear and I hope that this visual acuity test will prove that there is more than just a "MILD CASE of MS" going on here!  I will keep you posted.

Lots of Hugs,
Rena

[wonko]

:-(

Your situation baffles me.  I appreciate why you feel the medical system is acting against you and nor for you.  Your story sounds reads like a nightmare!

I know a wise poster on this forum has mentioned (in my paraphrased words) that calling MS "mild" is inappropriate.  It's only use is as a descriptor looking BACK on the life of a patient.  Saying it is mild or inactive is not looking FORWARD and protecting your future, an issue obviously distressing to you!

I wish I could help you in some way.  How awful to need to listen to stories about other patients (what was the point of that?) and have it implied that you aren't worthy of the care of a good neurologist, since they need to see only "severe" cases.  Sounds like this guy has a sever case of something...

Confused and angry for you, sorry I can't offer more!