well i finally did it

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well i finally did it

Postby REDHAIRANDTEMPER » Wed Sep 27, 2006 1:53 pm

well i finally did it there everyone..i finally snapped on my new neurologist this week..he sat there looked thru all my stuff and basically told me there was nothing he could do for me and that i just need to live witht he symptoms for now...so to go back and see my regular family dr if anything changes.....i sat there and couldnt believe it.....he sat there and told me that since nothing was coming up on anything that there was no point in seeing him anymore.....i was speechless for all about two seconds..then i went off on him...maybe not the smartest thing to do but i did....told him it was easy for him to sit there and say those things to someone..he isnt the one with the problem...he can walk okay and remember things and feel both sides of his body....so for him just cause something isnt showing up right now i am not worth his time.....oh i dont think i have very been so mad in my life....he said who knows maybe it will go away....i raised my voice even more then...i said go away i have had this problems for over a yr and nothing is getting better just worse..
he just shugged his shoulder and said sorry..i just cant believe it..well in a way i can but..to be that no big deal with it is just insane.....okay am dont complaining ..thanks for reading...

chris
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typical

Postby gwa » Wed Sep 27, 2006 2:01 pm

This is a typical response of a neuro, especially if a person is SPMS. You are not alone.

I haven't been to a neuro in the past four years because I believe they are basically useless once the diagnosis is made. My PCP wanted me to go see a neuro, otherwise I would not have wasted my time with the last one. Prior to him, I had not seen a neuro in 12 years.

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Postby JFH » Thu Sep 28, 2006 2:41 am

Much of the problem I believe is because of the social-philosophy of medicine that most clinicians adopt. There is nothing that can be done for us because there is nothing they can do for us. Clinical care for most of them is about their provison for us. Unfortunately many people with MS accept this philosophy too!

So what's the alternative. I'm starting to favour the idea of self-management of chronic disease. It is me that will get me through this ultimately with the big goal of excellent quality of life - with or without MS - but mostly by achieving small interim steps along the way.

What does that mean for our neuros? Well I think we should not ignore them, despite their faults they do have knowledge (but perhaps not wisdom), but we should be even more demanding of them. And that means going into a consultation well prepared. Send a letter or email beforehand asking about the treatments and therapies discussed here for example and insist on a considered response.

Look up the work of Prof Kate Lorig and an initiative she has called "The Expert Patients Program". I've found it interesting and supportive.
John
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Postby REDHAIRANDTEMPER » Thu Sep 28, 2006 8:50 am

thanks you guys....it all ways helps to get idead from everyone....
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Which is worse, the Doc's ot the Disease?

Postby notasperfectasyou » Wed Oct 04, 2006 8:25 am

There is an awful lot of room for a Patch Adams in this field.

Have you already done Novantrone? What drugs are you on now? Are you SPMS? napay
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Postby REDHAIRANDTEMPER » Wed Oct 04, 2006 8:41 am

not on any medication right now except something for my migraines and some provigil for fatigue..thats it..no one wanted to give me anything until they were sure of what i had wrong with me....would love to get something to help but if they wont give me anything there is nothing i can do...i do take fish oil and CQ10..also multivatiam and extra calium....but thats it..very frustrating.....

chris
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wow

Postby notasperfectasyou » Wed Oct 04, 2006 9:44 am

You mean you've been diagnosed with MS and no one will give you a CRAB, this makes no sense. This sounds like malpractice. napay
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Postby REDHAIRANDTEMPER » Wed Oct 04, 2006 12:33 pm

no i am sorry should explain better....they are almost postive its ms..but since nothing is showing up on anything they wont give me anything for it and now i just had this dr tell me until it gets worse or something shows up then i should just keep going on..and oh maybe it will even go away......that is why i am not anything...yes they think ti is ms..but none of them want to give me anything for it....kinda of ruled out everything else....so this is why i get frustrated....would be nice at this time and just be told i have it and start treatment...strange to think 1 1/2 ago i was hoping it wasnt anything....now i am just praying someone tells me defently that it is what i have...but right it just wait and see maybe if it gets worse they will do something.......

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take 2

Postby notasperfectasyou » Wed Oct 04, 2006 1:06 pm

Ok, let me see if I understand now,

You have banding, you can't walk (because you have no sense of balance?) you got a clean MRI and the neuro won't say you have MS and everything else has been eliminated? yes? What other symptoms do you have? napay
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Postby REDHAIRANDTEMPER » Wed Oct 04, 2006 1:59 pm

yes thats right so far....not very good eye sight in right eye and have tremors in right arm and leg....tingling has started off and on in my left leg....havent been able to feel right leg for over a yr..so cant walk very good cause of it..stumble alot cause the leg dont work right...takes me some days a half hour to get out of bed cause it just dont want to move..if that makes sense

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idea

Postby notasperfectasyou » Wed Oct 04, 2006 2:31 pm

This might not be what you wanted, but if I had this situation I'd:

1) Find a new Neuro, but find a local group of MS folks like through the national society and talk with members about doctors. Go to an MS walk. Don't just make an appointment, that's a crap shoot. Find out what others with MS in your area think about their docs.
2) See an Opthamologist or Opthaneuro (I might have the name slightly in correct). Not an optometrist, they basically sell glasses. See a medical doctor about your eyes. They can check you for MS symptoms and maybe even get you to a more cooperative neuro.
3) Get B12 and Vitamin C. See threads here in the natural approach section.
4) Save all your notes from the Dr. visit. Your attorney might need them later.

napay
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Postby REDHAIRANDTEMPER » Thu Oct 05, 2006 6:18 am

thanks for the information..will be looking into that here today..trying to find a new one.......

chris
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Postby Grumpster » Fri Oct 13, 2006 3:06 pm

Hello there,

I suggest a spinal tap if you have not had one. That is what it finally took (at my insistence) for my MS diagnosis. Also if the MRI was brain only then they could have missed any lesions on the neck / spine area. Those lesion locations could easily give the types of motor control symptoms you describe. Good luck in you quest for answers. The symptoms sound all to familiar to me.

G
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Postby REDHAIRANDTEMPER » Fri Oct 13, 2006 4:47 pm

thanks did a spine last yr in august and also did the neck and lumbar spine mris...nothing yet..thats why he was like well we will just wait and see....thats why i am looking for a new dr......need to have them done again its been 6 months since the last ones...

chris
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b12

Postby jimmylegs » Fri Oct 13, 2006 6:05 pm

heya rhat, yea i agree about the b12. did they do a differential on that?coz they should have. if they did, what was your serum level? over 500 is where you want to be. i find it really hard to get up that high with supplements and am considering injections when i get home in december. i'm kind of numb to needles now after all this!

if u take some b12, go for the methylcobalamin. as opposed to cyanocobalamin. shorter shelf life, costs a bit more, but it's the "right" one. you may want to consider taking a hefty b-complex at the same time to help with absorption. i have had my docs telling me my b situation was fine based on my bloodwork, but i noticed my biggest single improvement when i took a bunch of b vitamins one day. as i have said elsewhere, i got my position sense back in my arms and hands, and could type again within an hour.

anyway as mentioned above this is all repeats of info elsewhere so i'll sign off now :)
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