Follow up mris but not ms?

[Joiedecour]

I got some great advice here from Poppy when I posted before about nonspecific white matter changes. Thank you, Poppy. I got an appt with MS specialist, took mris to him. He said there were 4 white spots but that "this isn't MS" but he couldn't tell me what it was. He wrote on the notes he was taking of history dx MS. He recommended not doing EVPs but ordered a brain MRI in 6 months with and without contrast under the 341.9 code which is "other demylelinating diseases." He said he could say 'possible ms' but he thought it highly unlikely. When I asked about fatigue he said we could try some amantadine. So I am confused again - if he really thinks it's not MS and he is a specialist, then why the follow up brain MRI and why can't he tell me what else is causing my symptoms? Anyone want to try to understand that for me ?

[Joiedecour]

Thanks for explanation of MRI strength, Kyle. The guy who ordered second MRI said he couldn't explain white areas, and ordered second under other demylelinating diseases code, it was the first neuro I saw who dismissed them as 'ok for age.' Guess I just have to be patient : (

[kwarendorf]

Hi Jodie -

1.5T is the most common strength MRI. It is being replaced, slowly, by newer more powerful 3T machines. The T(Tesla) rating refers to the strength of the magnet. The higher the T rating the stronger the magnet. Stronger magnets mean better images. Many people were diagnosed on 1.5T machines, myself included.

The follow up MRI is to make sure he is correct. This doesn't mean he's right :-) He will look to see if anything has changed in the six months between MRI's. The contrast will show if any of your " 4 white spots", or any new ones, are actively inflamed.

It looks like he is not sure what is going on at this point. The follow up MRI will give him more information.

Kyle

[Joiedecour]

Thanks, Ren and SarahL. I just called to find out strength of MRI machine and was 1.5. Is that good or bad? I was also told there is a 3 in town but it's used "for research." Ren, whatever I have hasn't even been called "lesion" just "white areas / spots." And my first neuro told me it was age related (I'm just 43). But if it's all nothing, then why schedule another mri, and this time with contrast, is what I'm wondering. Sorry it took you all so long for your diagnosis. It really is awful feeling bad with no documented reason to explain why. This forum is great though. Really helps.

[Joiedecour]

Th

[rendean]

My docs were all looking for "ovoid" lesions and mine were "too round". If only the neuros would trust their gut and NOT the Mcdonald Criteria so much then diagnoses could be faster.

What strength machine are your MRIs done on? Could make a difference.

I do hope they find answers for you soon!

Ren

[SarahL2491]

He may be trying to put your mind at ease to see if MS can be considered.  Also, you will want to show "changes" in time and space (from one MRI to another) if MS is to be considered.

Sometimes things will show up in 6 months, sometimes not.  Sometimes mine show no changes in years and then a burst of
activity.

The prescriptin is for fatigue and sometimes helps.  Provigil is another fatigue drug that sometimes helps.

It is hard to wait, for sure, my entire Dx took 31 yrs, and only last 6-7 yrs did I really push for it (after much research) and was finally Dx in 2011 by a specialist who knew what he was looking for and not afraid to read his own MRIs..........hang in there..

[Joiedecour]

Thanks for replies, Poppy and Ren. Poppy you're correct, the EmG testing didn't show any peripheral neuropathy. The new neurologists I've seen - local one and MS specialist didn't want to look at my record of symptoms, they insisted on me telling them. The first neuro even told me not to continue recording since it made a person over attentive. I thought that was a little disrespectful. Sorry to hear the dx took 4 years for you Ren. The specialist wants an ovoid lesion to show up on next MRI. He said he doesn't know what they'll do if there are more white areas such as I have already.

[rendean]

Hi,
Poppy again gave you good advice. My history for 4 years was that my lesions were not MS because they were not in the "right places" and my diagnosis was "other  demylelinating diseases' even though ALL my other testing including EVPS and LP results were negaitve.

Poppy gave good advice about keeping a detailed diary of all your symptoms whether you think they are related or not.

My list /timeline is how I finally got my diagnosis from an older neuro who didn't rely solely on MRI results. He made a clinical diagnosis and, lo and behold, a year later I finally developed a lesion in the "right" place but at least I knew I was beig treated and only had one new lesion in a year.

I wish good luck and lots of patience. It 's a tough road to diagnosis sometimes.

Best,
Ren

[Poppy7402]

Oh dear!  There is nothing more frustrating that not knowing exactly what is wrong.  

It seems strange that your doctor is considering a demyelinating disease, yet saying it's not MS.  The only other demyelinating disease I know of is the very rare disease CIDP (chronic inflammatory demyelinating polyneuropathy).  As this is an MS 'mirror' it should show up in nerve conduction studies - MS is CNS whereas CIDP is PNS.   I understand your NCS were normal.   In CIDP it is also very unusual to have the brain lesions due to the peripheral nature of the disease.

I guess the only thing you can do at this stage, unless you want to get another opinion, is keep a very careful diary over the next few months, and wait for the MRI.  

If it is MS, for a lot of us, the delay in diagnosis makes absolutely no difference.  Where I live, you have to 'qualify' for subsidy for the DMDs, and most of us don't.

Best wishes


Poppy

[Joiedecour]

Can this be a "possible ms" diagnosis ??