Back from the first therapy session...

[Rena705]

Well I am back and I am not sure if I will go back or not...seems a little out of my league but I did at least give it a try right.  I didn't get a chance to talk much...just respond to other's issues and I kind of think that my experience in dealing with people here has sort of made me the "therapist" rather than the patient.  The therapist that was there was quite happy to sit there nodding his head as I made suggestions to people about different things and he wasn't argueing so I just kept doing what I was doing.

After that I went to my old bone head neuro's office to get a copy of my file and I was given the card of the dr. that db is seeing...they said that all I need is a referral letter from my g.p. and that will be my main perogative at the appointment I have with her next Thursday!  They said that it could be a 6-9 month wait to see the new neuro but I told them that I am not getting treated by a neurologist and haven't been for 10 months so what difference is 6-9 months going to make?  They did say that this neuro reads all the referral letters himself and decides what patients he will see when so if my gp writes the letter right maybe I will get in sooner...one can always hope I guess.

So the rest of the week is mine and then next week I have to face the exercise program at the lung function clinic on Tuesday and another group therapy session on Wednesday and then I see the gp on Thursday...full week and I will be spending an awful lot of time with medical people...do you think any of them will actually help???  hehe

Lots of Hugs,
Rena

[Fluffysmom]

I'm too tired to say much, but I can give you a big hug!  I'm glad group was OK, and that you'll give it another try.  It can be amazing what you can get out of something that doesn't seem to be geared towards helping you.  I'm too tired to explain that statement, so I'll say good night.

Love and Hugs,

kathy

[doublevision1]

I'm so glad there is a possibility to change neuros, although that wait list does seem long.  When I was referred I was told to be patient as it may take some time since he is considered the best at that clinic.  Even with that, I was seen 4 or 5 weeks after referral.  Mind you, I was referred during a severe relapse and was newly diagnosed; I suppose these factors influenced my position on the wait list.

I believe there is an opportunity for you to influence what goes in the referral letter, and I agree that what goes in it in terms of content, tone, sense of urgency, etc. will definitely impact the priority assigned to your case.  

Your GP should stress how long you have been living with MS untreated, and the fact that you have requested such treatment but it has yet to be prescribed, hence the request for a consult and second opinion.  She should include the symptoms that arose last year that forced you to exit the workforce; the various issues with your vision, trigeminal pain (did I get that right?), and everything else, and the need to determine what symptoms are caused by your MS to ensure proper symptom management.  She should state how long it has been since your last thorough neurological exam, MRI, etc.  She should discuss the findings from the neuropsych.  

The fact that you have previously been seen by Dr. X's colleagues should not be an issue.  I had already been seen by 3 neuro's over a short period prior to seeing Dr. X.  He told me I could choose to return to one of them or he would be happy to follow me.  I chose him due to MS being his speciality, that he is not just a clinician but a neurology professor and a researcher.  I was interested in having first-hand access to clinical studies which he oversees.  If you have an interest in clinical trials, your GP should also mention this in the referral letter as another reason for wanting to be seen at the MS clinic by this neuro.  You don't have to be seen there to participate in a trial (if there is one you are eligible for), however having a MS researcher as your doctor makes it much more likely that you will have access to the information.

When you next see your GP, it would be worthwhile to provide her in writing a concise, point form list of the reasons you are requesting this referral.  It will help you in the moment if she is resistant for some reason, and it will help her to write the letter.  Leave the list with her.  Anything you can do to influence and expedite the process is worth doing.  If she agrees to do it, ask when you can expect it to be ready so you can stop by and pick up a copy.  Then be peristent and call back (I am remembering the problem you had with her over your CPP forms).  Once you know the letter has been sent, call Dr. X's assistant to inquire if it has been received.  Then wait about a month and call back.  I did this and come to think of it, I think this is partly why I was seen so promptly.  Once I had her on the phone, just to inquire on the status of my referral, she booked me for the following week.  So yes, as you said before, the squeaky wheel definitely gets the grease.

I don't necessarily think that as patients we should HAVE to work this hard to get what we need, but in the long run, if it accomplishes that, then so be it.  Not only do you get prompt service which is of course beneficial to your physical health, you have the satisfaction of realizing a greater degree control over your own destiny.  Personally I am too much of a control freak to sit patiently and wait for them to get back to me!  

Speaking of being a control freak, I hope these suggestions (and the ones in my lengthy PM to you the other day, lol!) come across as overly directive (ie: bossy!); I really just mean it as advice, to let you know what has been effective for me, as I have learned to navigate the system this past year.  Obviously everyone needs to do what feels right for them, according to their individual situation.

I am wishing you all the best with this and will be eager to hear how things go with the GP.

[Lulu54]

If you are goingto take over the therapist's job the only thing you ave to learn to say is

"AND HOW DOES THAT MAKE YOU FEEL?" and then you nod your head appreciatively as the group spills its inner most thoughts out to you!!  

I'm proud you went and will consider going again,  Lulu

[Rena705]

WELL, I WILL GIVE IT ONE MORE TRY IF I SURVIVE THE EXERCISE PROGRAM ON TUESDAY...IT IS AN INCREDIBLY LONG WALK FROM THE PARKADE TO THE PSYCHIATRY DEPARTMENT!

YOU ARE RIGHT T-LYNN..IT PROBABLY IS GOOD FOR ME AND I WON'T GIVE UP YET.  I WILL ASK THE GP FOR A COPY OF A REFERRAL LETTER SO I WILL KNOW WHAT SHE HAS TO SAY!

Wobbly...thanks for the kind words...perhaps I will take over the therapists job...he doesn't seem to do anything...he didn't even write anything down about anything and he only added his two cents when he knew he could possible get a laugh...that is the way I see it anyway!  Like I said, I will give it another try but I just don't think that this is going to help me.

Lots of Hugs,
Rena

[Wobbly]

well, this is no surprise with all the help and info you give to us here on the forum, it doesn't surprise me that you would be there to help others...and like T-Lynn says it might help you out as well.

I myself would feel good with myself to help others out...you help so much here, I can imagine how much you would help in person....good for you..

and I do hope your GP will write down the correct info on the referral, so you could get in to the Neuro asap...

I'm proud of you for going to the session and helping people... I myself have attended groups and know what it's like..

take care
Hugs
wobbly
undx

[young at heart]

RENA,

THE THERAPY SESSION SOUNDS LIKE YOU MAY  HAVE HELPED MANY PEOPLE,BUT IN RETROSPECT IT MAY HAVE HELPED YOU ALSO.

GIVE IT MORE THAN ONE CHANCE.

I PRAY YOUR GP WRITES THE CORRECT LETTER AND GETS YOU INTO A NEW NEURO,YOU SO DESERVE IT.

YOU SURE HAVE A FULL WEEK NEXT WEEK

HUGS

T-LYNN