At the end of my rope...

After the situation I went through yesterday with the Opthamologist I really feel like I have reached the end of my rope as far as getting the DMD's.  He was what I figured my last straw and he decided to dump me very unceremoniously and other than my neuro/psych consult I don't really have any other options.

Legally, I don't think I have it in me to start a legal battle and I don't really know if I have a leg to stand on anyway.  I will give it some thought but I really don't know that I have the strength or the money to even begin something so serious.  My biggest thing is that how do I prove that these things were said by these doctors...why would anyone believe me over a "Neurologist" or and Opthamologist or even a G.P.  Apparently these people are held in high esteem (not by me) and I haven't even really had a title other than Girl Guide Leader and Business Computer Specialist!

Hubby and I and my Mom are going to put our heads together in the next few weeks and see what we can come up with and make a decision then.  I am emotionally torn to shreds right now and feel very close to the edge and really can hardly talk about any of it to anyone...even my dear friend Ada!  I tear up just trying to send her an e-mail!  So I am going to be around and will try to help others if I can for the time being but I wanted you to know that for now...I have given up on my own behalf...I may get back on the horse in a while but there are a lot of factors that will play in that decision.  I have to say that I couldn't have made it this far without all the help and support I have had from ALL of you and I know that there will probably be some backlash at this decision but I just don't know what else to do and I just don't have it in me to fight the establishment when they obviously appear to have it in for me.

Again thank you for all the support you have all shown me and like I said...I still want to try to help the members here who have become my friends and those that I have yet to meet.  I may not have been able to win the war for myself but I hope I can help someone else with their battle.

Lots of Hugs,

Rena

[Deb61]

((((((Hugs))))))) Rena.  I'm so sorry about your luck of getting stuck with dumb-a** doctors.  This really gets my dander up, because I've been emotionally scared myself by health care "professionals".  

You are so sweet to consider others when you're feeling so disheartened.  You are obviously a very kind person.  

Forgive me, Rena, if you've considered this before (I just want so much to help you), but I was wondering if you tried scoping out professionals away from your area.  It seems like all of the dumb-dumbs are in your town.  Is it possible to have some of your specialist consults in the US or maybe in another part of Canada?  

(((((((Hugs)))))))) again,
Deb  

[trueblue06]

Dear Rena,

Oh God, so not fair on you, they really are a bunch of ****** aren't they?

When you go to your next apt can you take someone with you?

I don't know whether what I am about to tell you is legal where you are or not, but when I needed proof of how I was being treated by a surgeon once, I took a recording device with me and taped the whole appointment, ( he didn't know ).

In Aussie this is "illegal" as far as using it as evidence, but, the thing is, you can take it with you to another doc and, without saying who the previous one was, you can let them hear it, that is, if they will listen. Then the next doc has the actual facts in front of them, exactly what happened at your appointment, no making up stuff, they get to hear it. You just should have heard what my specialist said, I gave it to a legal friend of mine, he was horrified! They then can't say you are making up a story or whatever it is they say when they write about you.
It seems they all think we are loopy. well, guess what, we all have a degree of malfunction in our brains, so do they, I mean...hello?
It might be worth a try....
Our problem is enormous with our memories etc, but they don't seem to take any notice of that. I think some of them got their degrees from a cereal packet. There are people on this forum, who in my opinion, have far more knowledge than some of these poor excuses.
I sometimes think we get so rattled by them that we just get ourselves into a bit of a state. It seems to only take one "specialist" to colour every perception of you as a patient, it makes me so mad!
Hang in there, you have to keep searching until you find the right one, meantime, we are all here!

TB
  

[mokibear]

Oh Sweetie, my heart is just breaking for you. I know that it is said here that it is best to be seen by a MS neuro but I have been to 2 already as you know and both so far were a bust. The only decent one I've seen was a neuro who was NOT a MS specialist. I may end up back with him yet. So maybe this you need to see someone else. I do think maybe a walk-in-clinic as Wingnut suggested is a good idea.

I know you are down and feel like you are done the fight and that's okay for now. Take a break and recharge your batteries. We all get that way but what is worse is that you are diagnosed. I just don't get their thinking, but I guess that's the point isn't it? They don't think.

We are here for you Rena just as you have been here for all of us. Lean on us my friend. I wish I had better advice for you, but alas my mind is blank. I'll put my thinking cap on for you.

Hugs and prayers to you Rena
Moki

[Sunnytoday]

I have nothing to say- I'm at a loss it seems- except that my heart breaks for you... you are in my thoughts and prayers.... feel free to msg. me anytime if you need a shoulder to lean on or a smile....
((((((((((((((((hugs)))))))))))))))))))
~Sunnytoday~

[Lulu54]

Hi there. I went back and read your profile and can't believe you have been living since 1993 with a dx but no dmd's.  Are you doing that well (marginally?) or is it that difficult to get them approved in Canada?  It has to be so frustrating - I know what we are feeling just a month into this process; I can't imagine 15 years later being stuck in the same spot.  

Thanks for being there for me, I wish I could do more for you.....

Feel better,
Laura

[wishforchange]

I don't know if this helps but I've noticed again and again in my life and others that it is always when you give up that things unexpectedly turn around.  The establishment hasn't got it in for you, it has got it in for everyone by the sounds of it.  But it is made up of people.  Something will happen to set you back on the right track.  Believe me.  Stop fighting and it will come.  

You may remember a little of the tiny bit I have shared with my battles with the health service, professionally too.  Some of the stuff that is going on with me is beyond belief.  Yet out of the blue I came across a really good neurologist, through the most wicked events that had happened to me in my life, and he is pulling out all the stops to get me sorted out.  Indirectly it was the doctor who harmed me most in this world who led to this, as he set me on the path of referral and dismissal and referral and spiteful gossip etc. which brought me to the door of one of the few real doctors I have met.

The best is yet to come Rena.  I'm not saying this just to cheer you up.  It always happens, to everyone.  Sometimes hopelessness is the key...weird philosophy but just my experience.  Just don't ever take your eyes off the goal.  The idiots you are dealing with will somehow get you where you need to be.  Please trust in life.

I'm beyond crying, the tears have dried up, literally, but twice in recent months unbelievable turnarounds have happened regarding my medical issues.  I moan because I like to, and am about to moan in another post of my own, but things are so much better than they were, and it took an act of absolute wickedness by a doctor to indirectly initiate this improvement I now have in my cafre.  We never know when we are being blessed I suppose.  

It's 3.30 am here, generally get a bit spiritual when I'm wide awake, again.  Sleep every other night these days.

PM me any time.  We can discuss things maybe more privately.  I probably know a lot of what you are going through.

You are strong, and you will pass this slump.  I promise you, and I don't make promises I can't keep!

[Rena705]

Again, I want to thank everyone for their support and their offerings of ideas to get me the help that I need.  Short of going to another province or to the U.S. of A. I have tried pretty much everything else and I don't know that going to an out of province dr. would be an improvement.  The following is an explanation of the circus that my sis-in-law's daughter is going through in Newfoundland as explained by my sis-in-law:

Two weeks ago she started having problems with her legs/hips and called his office on Monday to get an appt., twice Tuesday and Wed morning.  I think I may have told you that he called her back when she was on long distance with the insurance and said "I got your spinal results and I'll call you later".  She called back right away and the secretary said he was gone to lunch and didn't think he would be back that day.  She called again on Thursday monring and afternoon and he didn't call back till 5:15 when she was on route to my house.  Robert (her boyfriend) told him that she would only be gone 5 minutes and tried to give him her cell number to call as she needed to talk to him as she was having problems - he said no who are you.  Robert said her boyfriend and he said well just tell her her test results are negative and I'll talk to her after.  In the middle of that stress she got a letter from her insurance telling her she had 30 days to file appeal and then 30 days from that to provide medical evidence that she is totally disabled.

Well a week went by and he didn't call so last Friday I called the complaints office.  The lady told me that Melissa needed to call his office and tell the secretary that she needed to see him by the 22nd which is the date I told her we needed to get back to the insurance company.  She said to call her back by Wednesday and if they wouldn't fit her in by the 22nd and wouldn't see her that they would get her appt.

So Melissa called the secretary right away and left a message and then another in the pm stating she needed an appt as she was having problems with her legs.  No call so she called again twice on Monday and finally Tuesday morning when she called again she got to talk to the secretary who said she couldn't book the appt until she discussed it with Dr. Mumtaz.  Wednesday morning the secretary called to say that she hadn't had the chance to talk to him but did Melissa realize she had an appt for Friday at 9 am - hello - she didn't have an appt and had been trying to get one for almost 2 weeks at that point.  We think that the complaints dept. booked that as a fall back in case he didn't see her before then or wouldn't see her as it's odd that she was booked for an appt. on the deadline I have given her but hadn't received written or verbal notice of the appt.

Anyways she saw a-hole Friday.  He basically said her spinal is negative so she doesn't have MS but he doesn't know what is causing her problems.  I then said "you had said that the spinal may give other avenues to look at" and he said "no, you are mistaken - if it was positive it may not be MS but it could be other things that we would then look at".  I said what's next - what do we do now to figure out what is causing her problems.  He said well you can see another neurologist as I've done everything I can.  I said in November we asked for a second opinion and you said you would get one of your collegues to look at her file after all the tests that you were ordering were done as they would need to see those too.  He said well I can get one of them to look at it but Melissa you are a very anxious person and that may be a lot of your problem.  I thought she was going to smack him.  I said she may be anxious but who wouldn't be after being off work over a year, lost 50% of the vision in her right eye and now her legs are dragging - something is causing this.  He said her ANA levels are now high in addition to her RH factors.  I said you were going to call the neurologist in June as you thought she needed to get in to see him sooner and you knew him.  He said no, I can't interfere, you will need to get the family dr. to call him as he will get her in sooner then - we all have to if the GP says they have an urgent patient - I just saw two new patients yesterday when the GP called after less than a week - I said that's odd Melissa has been trying to get an appt with you for 2 weeks as she is having problems and she is your patient.  I questioned him on having another MRI and he said there was no point as the MRI would have showed the problem as it was done 8 months after she started having problems and I said no it wasn't - she had the main episode last May 24th weekend and her MRI was done in early August - since then she's had numerous other issues including her vision decrease.  He said you are wrong and I said check her chart I'm not.  Then I questioned him on the contrast again and he gave me the same BS as before.  I said that's odd the head neurologist in ON is saying that with contrast they can detect problems earlier.  

I said I want Dr. xxxxxxxx to look at her file as that is who she saw when she had the episode 5 years ago - oh, he said I didn't know that.  He's on vacation but I'll talk to him on the 29th.
I said there has got to be an explanation and she's already lost her vision so I don't want her to lose her legs if it can be avoided.  He then did an exam and her right arm couldn't hold up - he said that's new - how do I know you are having numbness if you don't tell me.  I said this is not new we have been telling you this for a year - she can't hold her arm to dry her hair without it going numb - she has been numb on the whole right side for a year - some days better but always some degree of numbness.  He said I'm going to order an MRI on her brain, neck and spine as last time I only did it on her brain and I'll put a rush on it so she will get it in 4-6 weeks.  This is the same guy who last year couldn't rush the MRI as he had no control over how they rate them?   Liar Liar Liar!

Before that too he was back on the kick that she can work and again when I explained what she does and that she has to be 100% all day and she's not 100% 10% of the day.  He said no she can't do that job now - you think?  

So I'm writing a letter tomorrow documenting what was discussed as he never does what he says - time to put a little heat on to see what the hell is going on.

She called the GP to get him to phone the radiologist to let him know she is having severe pain in her hips and her legs are dragging - he did get an xray on Monday as he had forgot that her aunt had a rare form of arthritis that destroyed both her hip joints at the age of 26.

Work also sent her a form that they wanted filled in by the GP "fit for work" to list all her restrictions and gave her 5 days to get it back to them - really nice crowd.

We saw a lawyer on Monday too and he said her insurance company turn down 90% of LTD knowing that 90% of those people don't fight it so they never pay out a dime - the 10% that do only get about 50% of what they are due.  I'd rather pay it to the lawyer than let those bastards just take it from her.  We may sue this neuro before this is all over if she looses anything else that could be avoided.

[Rena705]

So you can see that I don't have a lot of faith in any doctor anywhere right now and on top of her story there are so many of my friends here that have incompetency working against them as well!  Oh sure, I have heard of the odd "wonderful doctor" here and there but they tend to be out of my range and as I said before, I am tired and don't want to fight it anymore...it's just too hard right now!

Trueblue...I thought about having a recording device but it is illegal in Canada unless the person is aware that they are being taped and my hubby has been to all my appointments from the beginning (although he wasn't allowed into the Opthamologists office with me, he was asked to wait in the waiting room).  So basically it is only mine and my hubby's word against these morons...see what I mean, who is going to believe us?

Moki...I really do appreciate your good wishes and I know you are going through a personal he** all your own... I hope that you start to have some results too and that you don't end up feeling this way...it really is a difficult position to find yourself in.

Sunny...you are a ray of sunshine in an otherwise gloomy world right now and I appreciate your offer of your shoulder.  I am going to just back off my case for a while though and see what happens...nothing else worked right?

LGK...my disease was in remission until about July 2007 when I had what I considered a relapse and I am still having residual effects from that.  DMD's I don't think are that difficult to get in Canada when you have a neuro with a brain...mine just happens to be brain dead and has her panties in a knot and she needs to get over it.  My gp says she doesn't know any other neuro's and I have even given her names of other neuro's but she says she can't refer me to them if she doesn't know them or some such b.s.  She is a royal pain in the butt in herself and has been a thorn in my side for quite a while now with no new gp's in sight.

Wish...I hope that you are right and things will start to change if I do nothing...only time will tell and I will of course be keeping my fingers crossed.

Again, thanks to all of you for your support...and I am not saying goodbye...just need a rest from me and my story, I will be there for other's as long as I feel that I am helping not hindering.

Lots of Hugs,

Rena

[Wobbly]

Oh Rena...I'm sorry you have gone through yet another bad situation with the medical pros in this country....when will we see things change.  

You are right when you say it all around..not just where you are... I know it's difficult..but dont loose faith....keep track of things and rest up.  You sure do need a break, NOT from your friends here though.  

you are a big part of this forum and we would miss you so much, but we want you to take care of yourself too....so stay in touch...let us know if updates happen...OK...
I hate to see anyone of us go through this...
take care
andi

[wishforchange]

Talking in complete ignorance here but I want to just keep giving you options, and they may well be silly ones.  

You are not so far from the USA.  I always hear of that place is it the the Mayo Clinic? wherever that is, or places like it?  Can you maybe email around a few consultants and clinics and if you have the finances take yourself on a medical trip?

Maybe talk to Sunny about her person in NYU?

I am so sorry if this is nonsense, I am very far away and don't know areas or medical systems other than my own.  

Rena don't misunderstand me.  You don't need to give up searching, just stop the internal fighting - the hardest part.  I wish I could practice what I preach.  I am just frustrated for you fighting with neurologists who sound like they are never going to change or listen, so you need to take that as fact and look elsewhere.

Start researching clinics and consutltants via the web.  Pouring your energy into these current doctors is wasted I think.  You never know, if you present your case well enough a good consultant may waiver or reduce their fee.  

Just accept this advice for what it is, well meaning if maybe naive, and take from it anything that helps.  You are in an enourmous country next to another enormous county, and somewhere there is the person who can help you.  There must be.  

Giving up the fight doesn't mean giving up the cause - to get better.  It means taking the energy away from the negative and putting it into action.  One day, I'll do it myself.  You need to show me how and be a role model for me okay!

Stay strong

Wish

[Deb61]

Sweetie, you've been through pure h***.   You seem just like my sis, right there in the trenches fighting for the person she loves.  I don't know what I would have done without her, and I'm sure your sister feels the same way.  

Andi and your gut instinct is right.  You're raw right now and need some time to heal and recharge your batteries--but stay right here.  We'd miss you too much.

How's that sweet little doggie of yours that got hurt?  Is he up and about again?  

Is it hot up where you live?  I've about had it with the heat, here.  I can't do anything outside until it cools down.  

Deb    

[sllowe]

Rena Girl,

I have more fuel for your fire, with recent info I received in the mail, will summarize for you soon.

Not going to let that towel or rope hit the floor.  Even if you get tired battling for yourself,  We're going to hold it up steady for you as you've done for us.....

Will get that info posted very soon.

(((hugs))
shell