Inactive...whatever...should I have a repeat MRI?

[Rena705]

Some of you know the situation I am in with my mentally deficient Neurologists, G.P.'s, etc.  I have a question though...Do you think that since I haven't seen the neurologist since November 2007 and the last neuro decided that my MS was "inactive" but I am still having symptoms of something, should I have another MRI done at the sixth month point?

I would have to do this through my G.P. because I am not 'allowed' to see my neuro directly and my g.p. only believes what my neuro says in the 'one' letter she received from my neuro.  I have been to see a Rheumatologist now and she feels that I do NOT have Fibromyalgia. (whew!)  I am waiting for results of the blood tests she has requisitioned and the bone scan next Tuesday.  However, when I was explaining to the rheumy about the nerve pain in my feet and my legs, the fatigue I am still experiencing, the trouble with my eyesight,  the rheumy responded with "that sounds more like symptoms from MS but I am not the specialist"!

If what Quix says is correct and I have no reason to doubt her, the symptoms of MS can be active even if there are no changes in the lesions on an MRI.  We have both had the opportunity to call my neuro a lesion counter and if there are changes that have happened since my last MRI, how will we know without a new MRI being performed?  

I don't feel that I am being out of line in asking for an MRI but then I would need someone to compare the last MRI and a new one and who would do that besides my neuro?  So I am back at the beginning of a vicious circle I am getting really tired of running around!  I do have a copy of my MRI CD but is there someone else that can read these besides my neuro?  I don't believe anything she says to me and my g.p. says that there are no other neuro's that she knows to send me to and g.p.'s are very scarce around here and believe me I have been looking!

Personally I don't feel that I am asking for anything out of range by asking for another MRI!  I realize that if there are no changes, my neuro is only going to say "I told you so" but darn it...what else can I do?

I am still having the leg pain and none of the meds I have tried have helped one iota!  The nerve pain in my feet is a daily thing and I think I have had 3 days a couple of weeks ago that I had a reprieve from the pain.  My left eye is still drooping from the Paratrigeminal Neuralgia and I still get the ice pick pain in my head on occasion but that seems to have been totally forgotten about...I guess it doesn't matter to them that my face is crooked!  I am still having chronic fatigue, my speech has never returned to normal (the g.p. still hasn't booked the neuropsych consult...excuses), my eyesight is really wacky (some days not too bad, others I can't make out shapes on the t.v.),  This is all nothing new and I really hate to say that I am getting used to it...I DON'T WANT TO GET USED TO IT!  (sorry for yelling)

I need some opinions and maybe some ideas on how I might go about getting this MRI and how I can have someone other than the neuro compare them.  I appreciate everyone's input and all ideas will be considered because I haven't got a clue as to what to do next!

Lots of Hugs,

Rena

[Rena705]

Christine you had better be careful what you offer cause I may take you up on it girl! ha ha  My gp absolutely believes all the information that she got from my neuro and will not budge on it!  I have my doubts that she will order an MRI but I guess it is worth a try.

db
I had my pelvic and spinal MRI that I paid for at the one on Whyte & 114th st. and it cost me $1150.00.  I am going to try to ask for a letter from the neuro if I can even get a minute to speak to her nurse...that alone is like pulling teeth.  I also may ask my gp for a copy of the letter she received from the neuro...it is about me after all!  

Thanks for your opinions and ideas girl and I will keep you updated as to what I should do.

Lots of Hugs,

Rena

[Nerve_Wrecked]

*innocent look* I'm...uh...gonna shoot you a very innocent PM *angelic look*

Love
Chris

[doublevision1]

Did she literally say she didn't see any reason "to waste her time"??!!  How utterly disrespectful.

I don't think you should have to pay for your own MRI, but it is a last resort if you need it, and for your own peace of mind it may be well worth it.  And they are fast.  You can get an appt promptly and the results are back in a day or two.  I'm talking about the clinic on the corner of Whyte Ave and 114th St (I think).  Do you know where I mean?

I know I keep saying this, but I truly would push for her to respond to you in writing citing her rationale for refusing treatment (from both docs, actually).  I would put it in those terms.  Refusal of treatment is a very serious matter and had better be backed up by science.  Such a document may come in very handy someday. When pressed to put opinions in writing, in general people tend to be a lot more careful than what they throw around verbally what may be inappropriate, unprofessional, just plain WRONG, etc.

Like Chris says, you are not trying to be deceptive about your reasons for wanting treatment.  What are you going to do, get high off of Copaxone?  Maybe your doctors are afraid you're doing all of this to get your hands on some medical mary-jane???   hehe

Whatever is going on, it sure seems like there is some kind of underlying agenda at work here.

Maybe it is time you headed over to Saskatchewan for a visit with your good friend Chris....

db

[Rena705]

Hey girl...the neurologist told me that I am not to deal with her.  If anything were to come up like a major relapse, which is virtually impossible I figure because my MS is "inactive" I am to deal strictly through my G.P.  I asked her about seeing her in 6 months and she said she didn't see any reason to waste her time when my disease is inactive!  Yes it was at about that point that my husband grabbed my arm because I was wanting to slap her upside her saucy head!  

So I figure I have been told and put in my place and she is so adamant that my disease is inactive and I don't need any further care from her that I just wouldn't be bothered I guess.

That is why I think if I am to have an MRI I will have to request it from my g.p. and I may have to pay for it myself.  I am sure that the radiologist would read it but like I always prompt people on here it is better if a neuro reads it but...

Thanks for the response though my dear...I really do appreciate it!

Lots of Hugs,

Rena

[Nerve_Wrecked]

Ok, first and foremost, I would absolutely get another MRI (Can your GP order one? No Fair, mine can't, a neuro has to do it!!!!!). Now, I believe you plan on finding a new neuro as soon as this CPP thing is all done, right? If so, then in the VERY least, get another copy of the MRI on CD, to be re-evaluated by your new neuro, when you find him/her.

However, if your GP doesn't believe the neuro (I may have misunderstood that though), then I'd ask your GP to send copies of the MRI to a completely seperate neuro "for evaluation and treatment suggestions". If I misunderstood you, and your GP believes your neuro, I'd get your CDs and come visit your good friend Chris here, and have "an attack" while you were visiting.

That may seem evil and dishonest, but really...you HAVE the dx, you NEED the DMDs, it's not like your being deceptive to get an rx for some heavy duty pain meds, or something, we're talking about a serious, diagnosed disease, and the drugs could improve your quality of life!

So, that's my evil and dishonest input!

Shoot me ;)

Love
Chris
(un-dx)

[doublevision1]

um, that's BAD luck, not "back" luck.

a minor case of cog fog perhaps?  

[doublevision1]

I think another MRI is reasonable given you are still having major symtoms, and recently had fibro ruled out, and have the opinion of your rheumatologist who thinks your symptoms may be MS related.  I believe all of this warrants futher investigation, and updated MRI makes total sense to me.  And, as I just stated in my post to Sllowe, I pay my taxes and am entitled to the service.  This is how I see it and luckily, I've not had the problems you have had with getting any test or service I've requested.  You have had some back luck ending up with the characters that you've had to deal with.

My MRIs have been done at the same clinic, and each time the radiologist compares the new one to the previous ones.  I know it needs to be reviewed by a neuro of course, but the radiologists observations are important, if they do notice anything amiss.  The radiologist who has done mine reported that my lesions are 'consistent with early MS,' talked about evidence of demyelination, etc.   So while he's not a neurologist, clearly he knew what he was looking at.  My neuro didn't have any different interpretation from what the radiologist said.

BTW, why aren't you able to access your neuro directly, now that you are a patient of hers??? That is just so odd and not typical.  Was it explained to you why it must be this way?

I am sorry that you continue to suffer so much.  I truly hope things turn a corner for you very soon.

db