How many MRI's are enough

[AmishErin]

Okay I have been Diagnosed since 2004 I have had 5 MRI's but I havent had one for a few years.  Last summer my neuro tried to schedule one for me.  I told him I am not having any issues right now whats up with that??  He told me he thought it would be a good idea to just get an MRI to make sure everything was still sleeping and peaceful.  He did schedule a bladder ultrasound saying that since I wasnt having issues it would be a good record to compare to in the future.  

Ok now a year later I am having Bladder Issues!!

I Googled it Cause I am not made of Money and I wanted to know what I was talking about before I walked into the doctrors office.  Turns out that 80% of ppl with MS have bladder issues.  

Ok  the bladder issues that I am suffering from seem to not be the most serious kind.  It looks like a storage issue.  I think to myself... Hmmmm Maybe I have to go to the potty... oh yeah I do... OH YEAH I HAVE TO POTYY!! then a tsp of urine dribbles out as I dash for the little girls room.  Treating it by drinking my liquids at times when I am home.

So the Internet said I needed to make sure I didnt have a UTI which I dont think I could have yet.  I have to go in for a pneomopnia xray in 30 days and I will double check then but I am 90% sure that he will just want to have me pay for another MRI.  
Is there any reason that I should get another MRI?  Any Thing that they can do if they give me another MRI?  Anything that won't be able to be done if I don't get another MRI??

I do have Leisions in the PONs  3 I think  one that is 8 mm. According to the internet that is the pee area of the brain... so I already know mine is broke. (13 lesions in total 2 that are an inch in diameter)

I am on avonex.   I have done long term solumederal in the past and wasnt fond of the outcome.  If 80% of MS patients have Bladder issues do any of you?? and what does everyone think... another MRI or not??


Thanks

  

[JonM]

80% having bladder problems means at some point in time, not constantly.  I.e for about 2-3 days during my last bad exacerbation I had a bladder problem.  Haven't had since.

As far as the MRI, I suspect your Nuero is concerned that your Avonex is not working as well as it should.  Increased lesion load may trigger them wanting to change treatment drugs for you.

Jon

[shoshin]

One reason my neuro told me that they like to have f/u MRIs is that you could have new silent lesions on the brain that don't cause any symptoms. But if this did happen, I guess the only thing they might do, like Jon says, is change your treatment. I don't really have an answer to your question, but FWIW, the Consortium of MS Centers recommends follow up MRIs for

• Unexpected clinical worsening
• Re-assessment of disease burden before starting or modifying therapy
• Suspicion of a secondary diagnosis

(www.mscare.org/cmsc/images/pdf/MRIprotocol2003.pdf)

sho

[jensequitur]

Lesions in the spine can cause problems with the bladder, as well as lesions in the pons.  Hard to say which one it is, as there's a lot of silent damage, as sho says.

Personally I have no idea how many MRIs you should get.  I got one of my brain for my diagnosis, and one of my neck later to check for lesions, but haven't had any since.  I think that there should be an MRI one year after being on DMDs to check for progression, and anything else is up to the doctor.

[Quixotic1]

It is appropriate to get MRIs periodically during treatment.  They certainly don't need to be done real often, but it is a good idea to look for a sudden large increase in lesions or in lesion size.  You're on the lowest dose of Interferon-beta-1a and it makes sense to get an MRI at least every few years to see what's up.  (But, dang! they are expensive)

Would you always know from your symptoms that you had more lesions?  Not if they are in the brain.  The reason for this is that 90% of the brain is silent and, if that is where the new or bigger lesions are, you would not have symptoms.  If you read the Health Page called "Lesions vs. Symptoms" it gives a better explanation of this.

On the other hand, most lesions in the spinal cord (and this includes the brainstem) speak up with symptoms, so one usually knows if there is a growing problem there.

I'm sorry you're feeling bummed out.  This disease can certainly do that.  Too bad we don't have cheap monitoring tests and cheap medicine.  I think we are being taken for a ride.  Stay with us a while and vent.  I saw your "mood."

((HUGS))

quix

[AmishErin]

Thanks all...   I was on Avonex for a few years before I was switched to Rebif.  As far as I have been told there is just the one standard dose of Rebif... the one that I am on.  

Ok  I am deathly afraid of needles.  I cannot give myself the shot.  I have to have someone else give it to me.  even if it is my 10 yr old son.  I know the dissease is progressive.  I know it will just get worse over time.  

I have never had a spinal MRI... pretty sure that they are there too.  That was the big argument my neoro had last year for a new MRI.  I asked him if there was anything new that they could recomend once I pad for this test.  He said that there wasn't.

Well Rebiff is the most effective therapy out there right now right??  

   (Tysarbi as well... but the possible deadly brain ifection scared me off.)

SIGH!!!!!!!


Bladder symptoms have subsided this week and I am actually thinking of pushing my pnuemonia (pneumonia) xray next month back another month now... back to school time is so expensive....


If I went into the Dr tommorow..... there isn't anything they could do no matter how much money I gave them that could be any different than what I am doing right now is what I am thinking.

If I didn't know I had MS it would be very important for me to get an MRI so that I could get a diagnosis so that I could get on a drug therapy..... but I have a diagnosis and I am on a therapy.  


Some day tests will be cheaper.  but you know what I I can be thankful for??? I can be thankful that I didn't get MS in 1988 I bet that sucked ***.

I am just worried about my brain.  I dont even know if I have a question.

[JonM]

I can feel your pain and desperation all the way here in Florida.  Does the Amish Community help you with this?  I hope they do.
God bless you and your family, you're in my prayers.
Jon

[pis4penny526]

I have been dx for the 2nd time in a yr. I was told the first time it was a mistake, last jan. now this jan , due to me being in the hos. for a month that it was M.S. all along . do you know how many MRI's I have had? about6 and counting all with contrast, back  on- 6-6-06 i was dx with Transverse Mylisits now the M.S. how much can one handle. good luck to you !