Followup from - Myoclonic spasms are not symptoms of MS!!!

[aussiepixie]

Back again,  

I haven't really been gone but in the background lurking and catching up with everyone elses posts.   Being new to this diagnostic trail that we all must follow, I don't always have anything to add  to the posts but I surely understand the concern and worry experienced by everyone here.    

I am patiently (well not really patiently) awaiting my upcoming tests.    I have an EEG on Tuesday and then the following week all the auditory and balance tests, inlcuding VEMPS, BERA etc.   After this I will see an ophth/neurologist at the request of my normal ophthalmologist.

Today I saw my GP again for a referral to have L/R carotid dopplers done (at the request of the neuro).  

She showed me the last letter from the neuro which states that on my new MRI (FLAIR one) he sees more foci of high signal in the cerebral hemispheres than on the previous one,  (which was only done six weeks previously).

OK.....   So when I was in his rooms after the FLAIR MRI and he told me that he wished he could say his brain was as good as mine........  what the (blankety blank) was he thinking?

I'm hoping in a few weeks with more information under my belt I can then start looking for a "real" neurologist, one who has better communication skills.   You have to remember that this is the man who posted out my initial abnormal MRI results when I still had about five weeks to wait to see him.

I will be in touch again next week after my EEG.

[jensequitur]

I don't know what it is about neurologists.  I guess they see stroke patients and people with Alzheimer's most often, so when they see an MS patient that's actually able to use complete sentences, they don't know how to act.

My old neurologist, when I told him my feet hurt, said "Mine do too!"  If his feet hurt like mine, I would recommend   My feet hurt so bad that when I walked, it felt like I was walking on sharp rocks.  I had to get hubby to rub on them, which sometimes helped, and sometimes would cause them to go into spasm.  

When I told him my leg had no feeling when I woke up one morning, he said "oh, that happens to me all the time."  What?  I thought I had explained it to him - it wasn't that my leg was asleep, it was that it was completely numb.  There were no pins and needles, just nothing.  I stamped on it and feeling didn't come back.  If he's having that problem, he needs to see a neurologist!

All that and this was the guy that diagnosed me.  I hope he's a better teacher than a doctor, because as a neurologist he was decidedly sub-par.

Anyway... don't get me started.  It's a chronic problem.  It helps if you're talking to an MS specialist, but that means an actual MS specialist, not somebody with a lot of MS patients.

I get several kinds of myoclonus.  I don't get the arm jerks in the morning, but my legs are troublesome.  Sometimes when I stand up my knee will bend back and forth really quickly, or the leg will bend and extend and my foot will tap the floor.  My back will do a total twisty jerk thing that seems to go along with a rather pleasant paresthesia.  Then there's the myoclonus in my soft palate - sounds like a tap-tap-tap-tap.  Really annoying.  Keppra has helped all the myoclonus problems.

[kerrtelli]

I don't know if mycologic jerks are part of mas or not but I know I Hqve them.

It's actually annoying and embarrassing.

But...since i have been taking neurontin, they Hqve subsided a great deal.

Kerri

[RedFlame]

Neuros in general for me have been poor communicaters.  THere have been a number of times when I believe they were talking about a different patient, getting us confused.  I have myoclonic jerks in the day but not very many, seem to come and go.  My last sleep test continues to show 117 limb movements per hour despite cpap intervention.

I think it is part of MS.  

Red

[Sidesteps]

My last Neuro (who I am not returning to) informed me that some of my symptoms "sound like" Periodic Limb Movement which she informed me "isn't related to MS" and it seemed to stump her that I get them day/night. What made me laugh is that when I went home and read about it, PLM, is nocturnal myoclonus.

[COBOB]

By the way, myoclonic seizures (a form of epilepsy), myoclonic startle reflex and myoclonic "jerks" arising from the sensorimotor cortex are all associated with MS.  I'm kind of getting tired of my morning "jerking."   Most of my t-shirts have coffee stains on the front of them.  The dogs clean most of the coffee off the floors.  I also need a new work laptop, since between 7:00-9:30 AM, the jerking in my hands and arms hammers the crap out of the poor laptop keyboard.  

Bob

[HVAC]

None of the neurologists I have been to were great communicators. Most of them said things I just shook my head at. I think they kinda of think out loud. At least he is doing the standard tests.

I totally understand your frustration. You have a right to be.

Alex

[supermum_ms]

100% true you need a neurologist with better communication skills but i'm not sure i'd be trading this one in just yet, he at least is looking for more evidence.

LOL it wouldn't be a case of mr neuro not wanting to 'unnecessarily' worry the patient but is perfectly comfortable letting the refering GP in on the possibility of there being something to worry about?

Maybe when he knows for sure whats going on, his communication skills with you will improve though maybe not lol so hard to trust anything he says, when you already know your being told one thing and your GP is being told something else. It will be interesting to see what turns up with your scheduled test and how he communicates those to you.

Cheers.........JJ