I guess there is a first for everything isn't there??

[Rena705]

Well I can't believe it myself but I am actually LOOKING FORWARD TO SEEING MY NEURO!!!

I guess it's a cross between knowing that I now have a Neurologist that seems to care and when I told his nurse what was happening she said to come in on Monday!  It upsets me that I am probably starting on a new MS journey as my symptoms are new ones and I suppose it will mean more tests and possibly more meds.  

However, as the people that know me here know, I have been through 5 neurologists and this one is the only one that has taken me seriously.  I have been told that my MS is "benign" (durn I hate that word), I have been misdiagnosed, I have been over medicated which in turn caused me to have vertical double vision and started my inability to speak properly.  So, if I sound strange because I WANT to see my neurologist, the above should explain why.

I was just sitting here thinking that all the trouble we members have here with the medical community and how even though we can complain to each other and try to help each other, it would be nice if some of these problems could be brought to the attention of the medical community dealing with MS.

I have been told time and again that the relationship between your Neurologist and your General Practitioner needs to be a good one so they can work together and minimize the time spent with the specialist.  However, this doesn't happen on a regular basis and we are getting ripped off.  The MS Societies of the world are great at promoting the walks and the runs to raise money for research and such but what else do they do?  They certainly don't advocate for anyone I know with MS and I would think that would be part of their job wouldn't you?  They have been of no assistance to me and if anything every time I have tried to deal with them they basically just shut me down.  

Maybe I am barking up the wrong tree and maybe not, I don't know.  I just wonder if we were more vocal about the things that are NOT working for our community we might get a little more notice?  I know the worry of being "black balled" is a real scary thing too so of course we would have to tread lightly but then again, why should we?  We didn't ask for this ridiculously strange disease, we are only looking to be treated equally!  The way a lot of neuro's treat us makes us feel like second class citizens.  I guess it's something to think about anyway...don't want to be a s*it disturber but it doesn't hurt to give us all something to think about does it?

Well, that's my vent for the weekend!  he he  I will see my neuro on Monday afternoon and I hope he will be able to help me out.  My legs are not doing too well and the bladder spasms are becoming second nature and I don't want that to happen...it hurts!!!  So I will sign off for now and let you know how things go on Monday!  Have a great weekend everyone and keep warm...snowing here right now and while it's cold it's sure pretty!

Lots of Hugs,
Rena

[marymoto]

hi rena thanks for the great message i wish you the best for your appt. hope it goes well.yes i wonder if they are experimenting as well i kind of wish i could stay on teh steroids as i have minimal pain while on them. let us know how the neuro appt. goes. i had these weird bladder spasms al he time now i cant even feel them. i think was it you that mentioned you get those as well.yes i feel the effects of the cold as well it makes the nerves hurt in my legs.

[Rena705]

Hey Wobbly my friend!  Hope you are doing well!  I don 't know if the cold has anything to do with it actually...I don't notice a change with the changing weather...the legs just hurt pretty much all the time and I find I am getting really weak, realllllllyyyyyy quick!
As for the bladder, I had a lot of feeling full when I first started having trouble but now it's just  pretty much pelvic pain especially after emptying my bladder.  I occasionally feel full right after voiding but not like I did at the beginning of August or so.  I will be sure to post how my appointment goes tomorrow and thank you for your good luck wishes!

Thank you for the info on this Kaiser system...I am going to ask my gp about it again once I get this current problem under control.  I appreciate your information though!

Oh Mary...this sound sooooo familiar unfortunately and it is darn frustrating!  Sometimes I wonder if some of the neuro's are experimenting with us instead of the mice!!  I have dealt with the wait and see attitude for a very long time and then when things start to happen I am denied the courtesy of being taken seriously about my OWN body!!!  I have to say I am glad you were able to see the other neuro...now they can fight it out between them!  he he  I wish you luck with the steroids at the same time though cause the after effects can be pretty uncomfortable but nothing we can't handle.  At least you are getting help now and for that I am very happy for you!  

Lots of Hugs,
Rena

[marymoto]

hi rena i was basically just thinking of some of the same things as you my neuro only first diagnosed me with benign ms then mild ms this past ten days i have been to see my gp who thought i was having a relapse. go in to ms clinic my neuro is away other neuro says i am having an acute ms relapse orders 3 days of iv methylprdnisolone  1000mg. per day and proper mri s which i had done on thursday of my spine now why didnt my neuro order the spine mri before with all my complaints was he not taking me seriously or was it just laziness its funny the great neuro who i saw this past week ordered me mri for the next day and of my whole spine and i actually felt like i was listwened to for a change she even sent my gp a recomendation on how to treat the trigeminal neuralgia. i feel my neuro was taking a wait and see approach the other neuro beleives i should be on dmds. hope this makes sense.

[Nancy T]

Also, at Kaiser they have a computer in every exam room, so the doc inputs info from the exam directly into your record. That way they don't forget stuff between the visit and a later dictation. Also they can instantly look up all your meds, interactions, conditions, etc. on the Web or the Kaiser medical-info site. I can't understand why all practices aren't doing that; they SHOULD be.

[Nancy T]

Good luck with your appt. Rena; glad you have a neuro who's taking you seriously.

As for sharing information on computer, that's why I love Kaiser! It's a great model; everything about your health history is accessible to everybody you see there, and things like referrals, tests, preventive care, etc. all go like clockwork! I never have to call and ask for things, it just gets done. And you can see your test results, visit summaries, and prescriptions online, e-mail your doctor, make appointments online, schedule phone visits with your doctor, etc. Want to know what your last cholesterol results were, and how they compare with three years ago? Easy, the Kaiser computer makes you a neat little graph! It's SO cool.

The downside is that I think Kaiser doesn't get the best specialist MDs. But my family-practice doc there is by far the BEST I ever had, as well as the gynecologist, PT, and audiologist. Just don't ask me about the neurologist!!

[Wobbly]

I hope your appt goes well, I find that the cold has made my legs more painful and weaker, I'm guessing it's the cold??  I wanted to ask you about the bladder spasms, does that make you feel like you have to go all the time.. ?

take care
wobbly

[Rena705]

Oh Jen...wouldn't that be nice if all the records were on computer.  I asked my gp about that and she said that she hasn't got time to put all the data from each patient on computer.  I am sure that it is going to be, if it isn't already, a law that all patient data be input on computer.  As usual, I got a lame excuse from my gp when asking her about this but I should know better than to expect anything else I guess!  hehe

Another Jen...uh oh, this could get confusing!  ha ha  Sorry to hear of all the problems you have encountered while seeking a diagnosis.  Seems like it's getting to be the norm and I just don't understand why in this day and age.

I remember when we first got our computers in the 80's at the telephone company I was working for and everyone was all excited cause they were supposed to make our job easier... HA HA HA...if we only knew eh?  They really are only as good as the person inputting the data and if my gp ever gets her act together I hope she goes over my HUGE file to ensure she gets it right!

I have been where you have...ignorant, dismissive doctors but now I have a good neuro and I do trust him.  I hope that my appointment on Monday is a good one cause I am feeling pretty crappy.  At least I have a diagnosis so then can take it from there I guess.  I will let you know how it goes!

Rena

[jenandherboys]

I agree that we seem to get a raw deal from many of the neurologists we happen to come across these days.  My current neuro took about a year to come around to the conclusion that I have ("Probable") MS.  This is a far stretch from last December when he said not to worry too much about the "spots" on my MRI, that they could be from many other causes and that lots of people have them and DON'T have MS.

He had told me several times between then and now that he really didn't believe that I had MS, and, after reading over my medical transcripts from his office, he documented many times that he reassured me that my problems were not due to MS.  It reads like I was some nut-job who couldn't get it through her thick skull that I didn't have MS (as if I really WANTED to have MS!).

Lo and behold, now after increasing from 2 lesions in 12/2009 to 5 in 11/2010, and having significant symptomatic complaints, he has decided to start me on Rebif while waiting to see the MS neuro in 03/2011.  

In the meantime, I have dealt with his telling me that there is no neurologic Dx he can give me; his NP didn't even try to thinly veil her impression that I had more psychiatric/anxiety problems than neurologic; and don't even get me started on the University-level neuro that was just downright rude, dismissive and insulting!!!

On a separate note; I must be extremely fortunate that my PCP(GP), my neuro and my urologist(as well as the local hospital) all use the same database, so all of my medical information carries over seamlessly from one appt/provider to the next.  I never thought about the alternative...I did still have to repeat everything(or at least some things) to the UW-Madison Neuro and will have to do the same when I get down to Medical College of WI/Froedtert Hospital MS Clinic in March, but at least all of my local providers share the same system.  Yay me!!

Sorry this is so long-got sidetracked again...my brain tends to wander a lot (more) lately!

Be well!

Jen

[jensequitur]

It would be nice if health care, especially in the US, was better-managed.  I think there's a real shortage of PCPs/GPs right now.  Nobody wants to be a GP, because it takes longer to pay off the student loans.  A specialist can pay them off in seven - I think for a GP it's 11 to 15.  So as a result we've had three PCPs this last year.  First one retired, second one moved to BFE, third one didn't even last a day - wasn't accepting new patients.  We've finally found one in our area that is accepting new patients, but he's really busy.  So as a result none of my PCPs have ever communicated with my neurologists.

I would really like to see health information management take off.  We're still having to tell the same story over and over again to different doctors.  We should be able to plug in our card, and the medical records would pop up on the screen - all our drug allergies, most recent tests, drug interactions, current medications, all our medical problems.