still in limbo

[Evalucia]

Hello everyone!

I know a lot of you have been in limboland for a heck of a lot longer than I have.  I saw my Neurologist again about a month ago, after once again having symptoms of numbness, tingling, weakness, blurry vision and the new symptom cognitive difficulties.  He again examined me and ordered a new MRI and also sent me for a neuroophtlamology consult.  MRI showed no new or enhanced lesion and the report this time stated ischemic changes but did note that the number of lesions was significantly high for a patient my age.  No mention of demyelinating disease whatsoever.  (My first MRI stated lesions suspicious for MS since periventricular and corpus callosum) All other tests so far have came back negative all other mimics have been ruled out, so since the neuro found no other explanation for my lesions he stated that it could be "some form of dormant MS".

So forward to my ophthalmologist visit.  He checked my vision, no signs of ON, I do have some eye movement irregularities but he thinks I might have had that since childhood.  He reviewed my MRI and started shaking his head telling me that he does not know why they would write ischemic on the report.  I told him that I do have a hx of HTN well controlled though and he stated that a person my age should not have that many lesions and that they should definitely not call them ischemic.  He started pointing at my bigger lesions stating "this is MS" then pointed at the next one "this is ms" and so on.  He said that it made him laugh how these doctors would not commit to anything.  He figured maybe since all other tests were negative I did not meet the criteria.  He asked me how do I feel when I get overheated.  I told him like total crap which is why I have my treadmill in my nice cool basement with a fan on, so he was like "pseudoattacks, there you go!".  He asked me to go back to my regular neuro and that he will write the neuro a note letting him know what he thought of my MRI.

So here I am back in limbo, all symptoms have decreased somewhat, the only thing is that if I jog at only 4mph for greater than ten minutes my left foot feels heavy and feels like it is flopping so I've been sticking to walking instead.

I do have a cognitive test coming up this June, should I wait for the test to see if something shows there before seeing my neuro or should I see him before then?

[tj3762]

Hello,

I am so sorry to hear of your symptoms, etc.  I, too, am in limboland now for 11 years and I have had no lesions show up on my MRIs.

I just as of today went to see a new neurologist in the same practice, but all we talked about is my migraines with aura and new autonomic symptoms.  I am wondering if I should have gone outside the practice as suggested.

I just wanted to say hello and understand what you are going through as well.  

Terri

[supermum_ms]

Hi and welcome to our little MS community,

I honestly believe you would be better off getting the opinion of a neurologist who specialises in MS, because your lesion locations and sx's are quite suggestive of MS and your current neuro is most likely missing a few too many clues.   btw comments like "some form of dormant MS" would be enough for me to go looking for someone more informed.

I think seeing the neuro-opthalmologist and getting his added opinion, should be of some help in potentially changing your current neuro's wishy washy opinion but i'd still recommend making an appointment with an MS neuro and getting a new perspective on what is causing those brain lesions in MS locations if its not actually MS.

Cheers.........JJ

[immisceo]

Ha! "Dormant MS" — there's a new one for Neuro Bullsh!t Bingo.

[Lulu54]

Immesceo's new square for BullSh&t bingo made me laugh even though your situation is infuriating.  

I believe your neuro is quite suspicious of ms and sending you to the neuroopthamologist is the best clue of what the neuro might be thinking.  I would not necessarily stick with this timid doctor, but I think I would give him one more try  to have the continuation of one doctor and not appear to be doctor shopping for a diagnosis.


There's no sense in rushing the next appoirntment, thought.  MS diagnosis, as you already know, can take quite some time.

[Evalucia]

I guess I do not meet the criteria on MRI and symptoms alone.  I guess at some point down the road something will click.  I guess he does not want to commit to a dx unless he is sure.  Although he is not that "aggressive" he is very pleasant to work with, he does not disregard my symptoms, does not rush me out of the exam room, and as of yet he has not suggested CD.  I am a bit apprehensive about switching him since there are a lot of pricks out there.  I know MS takes time to diagnose and I have only been on this road since last June, although who knows what would have happened if my PCP had sent me for an MRI years ago when I started having these symptoms.  

I will give this neuro  a chance.  The neuro-ophthalmologist did say that DMD should be discussed and such but I do not want to start any drug unless MS is a sure thing.  

I just want to know what is going on with my body, If the lesions are due to MS then lets do something to prevent further attacks or slow the disease.  If the lesions are in fact due to HTN then what other measures should I take to lower my risk of a stroke even further.  (Although Im already controlling the HTN with meds and by being active and taking care of myself.)

Some of these doctors do think that we are out there fishing for a DX as if we are fishing for a label, they do not understand that without a DX it is hard for us to tell what the best course of action would be when it comes to treatment.