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Over nine months later, and still no answers ...

Oct 02, 2013 - 14 comments

trigeminal neuralgia






pyramidal tract signs





I've now had 4 weeks of trigeminal neuralgia (end Jan - March), 2 bouts of hemiparesis (April/May then August/September).  I lost my sense of taste completely for around three weeks in April.

During hemiparesis, my gait is shot (can't flex right ankle up), get atrophy in my right calf, weakness in right muscles from neck down to foot including arm.  I can't write/type/cut/other dominant handed things.  Grip is nil.  In August, my 11th cranial nerve acted up and my shoulder dropped.  Felt dislocated August and September, and eventually ran into problems with pain in my forearm and numb 4th and 5th fingers -- probable cubital tunnel syndrome.  PT taped my shoulder in place hoping it would heal at some point .... and it did!  Pain and finger issues resolved, just a couple of weeks past the end of the second period of hemiparesis.

I've had bladder urgency and incontinence (Jan - August), plus a period of bowel stupid (only 3 weeks) which overlapped with severe loss of balance many times a day.  All of this has resolved completely.  Also two week-long episodes of visual disturbance; none since May.

I have two areas of reduced sensation on my back (started with one small one that expanded out towards my shoulder, then added second one which is also getting longer now).  First stuff on my left.

I now have fasciculations, which started up in August in right leg, then started mildly in left as well, and now are anywhere from mild to silly in both legs.

My brain is toast.  Permanently, at this point, it seems my decision making ability, multitasking ability, executive function, and my short term memory have gone AWOL.  During flares of "whatever this is", I can add serious cog fog, confusion, using wrong words, slurring, inability to follow a conversation and stroke-like presentation.  I even type wrong words.  Also I seem to no longer be able to "picture" things in my head, which is weird.

I have chronic sinus issues and still wonder about whether there is some sort of correlation -- they started after dental work was done in April 2012.  Just recently had this tooth pulled, and was hoping somehow it was responsible for everything ... heh, heh.  Now being see by an ENT re: a communication, the chronic sinus stuff and some swallowing trouble I've had.

I have very disordered sleep and slept only 0-4 hours a night from March 15 - May 27.  Then six weeks of decent sleep due to a drug that I then had side effects from and had to taper down.  Slowly I've inched up to 4-5 hours sleep -- but I'm sure this is contributing to the brain that doesn't work.  I've lost 40 pounds now -- was trying for the first 35, however am trying not to now and still losing (thankfully I have lots of margin).  The more recent weight loss is primarily from muscle atrophy I think.

I've taken way too many antibiotics for random infections I've never had before.  I've had 5 mri's and an mra, most recent brain, cspine, tspine w/wo contrast (won't hear about the last set until my ms neuro appointment end of October).  The radiologist who read mri no. 2 said it met McDonald Criteria (2010) for ms.  Every neurologist I've seen, including my current neuro who I trust completely, says the radiologist is wrong (yet an ER doc I had told me that she was excellent when he read over my report).  My neuro says mri absolutely says "Not ms" although he knows something is wrong.  I've had a thyroid workup (overall normal), a sinus catscan, and a chest x-ray.

Actual dx and signs ... trigeminal neuralgia, pyramidal tract signs (right babinski, hyperreflexive on right).  I have a differential diagnosis of some sort of rare CNS vasculitis.

Now this week I'm having stabbing pains when I breathe which escalate to pain all around, on the left.  Ruled out -- tumour/cancer/pneumonia/muscle strain/pulmonary embolism/asthma.  I have mentioned ms hug to my doctor, but he is obligated to rule out serious stuff.  OR it could be a reaction to the antibiotics I'm on, or possibly vasculitis?  Feel like I'm not getting enough oxygen, but airways are clear and a puffer doesn't help.  My gp calls it air hunger.

VEP's Thursday, which I imagine will be fine.  Bloodwork fine, although last creatinine was up.

I'm starting to feel worn ... despite being an optimist.  I'm tired of wasting taxpayer's money ... but grateful I'm  Canadian and these tests are available to me with no cost, else our family would have been financially ruined by now.

Just wanted to summarize everything here because it had been a while.  Last week my neuro's office called and booked a follow-up for October 31.  I would love some answers, but I've had so many ups and downs (yes, it's ms, no it's not, yes it is, no it's not) I'm not sure if I DID get dxed I would even "believe" it.

This crazy journey continues ... :-).  Peace.

Edited November 5 to add;  Saw neuro; still in limbo.  Neuro is sticking with "lesions too small"; in addition he can't find a lesion in my corticospinal pathway that would explain the pyramidal symptoms/right side weakness.  Next appointment May -- we're at wait and see.  BUT ... no more investigations for mimics? Other cause?  Just had a sleep study.

August/September flare resolved, fascs disappeared, but they have since started up again.  Also some spasticity.  Also I've had two bouts of swallowing issues (one while on amitriptyline; the other after an albuterol treatment) -- wondering why I'm so susceptible to this side effect?  It's taking a long time to go away this time.

Of other interest;  most recent mri done at teaching hospital had odd report -- short, vague and it essentially dissed previous radiologists report of the same lesions.  (For instance, there are no periventricular lesions ... where previous radiologist identified, measured and labeled 2; same with 2 juxtacortical lesions).  Hmmmm.

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987762 tn?1331027953
by supermum_ms, Nov 06, 2013
Definitely hmmmm!

1- Is it possible to get the "previous radiologist" to provide her opinion of the latest MRI?
2- Was this latest teaching hospital MRI done using the same protocol, strength etc, as the one indicating MS?
3- Have you had cognitive/IQ testing to generate a base line or to identify areas of weakness?
4- Have you been assessed by a physical therapist to generate a base line and identify areas of spasticity, atrophy, muscle weakness etc etc?
5- Have you considered seeing an allergist, any connections to - air hunger, drug reactions, bladder/bowel, cognitive etc
6- Have you had an ultra sound of your vascular system to see if there is any vein/artery abnormalities? see.....

At the end of the day, this is what you are dealing with and whilst the cause hasn't as yet been identified, one day it definitely will be! The big question I think, is what if anything, can you be doing in the mean time because there are few people who could do nothing but "wait and see" whilst the neuro is waiting for all your ducks to get in a nice tidy row?! Think about it, what do you think you can do to improve your tomorrows, there is always something so think about it!


5887915 tn?1383378780
by karryon55, Nov 06, 2013
If the Neuro is thinking along the lines of CNS vasculitis then please tell me the Neuro has also arranged for a biopsy or some other testing to confirm this. If not he or she has at least got you on Steroids or Cyclophosphamide. This is a serious condition & if that is what they are possibly thinking then you should not be waiting around until May. That's my two cents.

It's got to be the most frustrating place limbo land & I pray you get some definite answers soon.

Keep going & stay as strong as you can be.

Take care.......Karry.

5265383 tn?1483808356
by aspen2, Nov 06, 2013

1.  I have no idea how to do that.  I wish I could -- if I were the radiologist and knew someone had completely dissed  my evaluation of the SAME lesions, i would want to review the new one.

2. I would assume both MS protocol.  Definitely both 1.5 T machines.

3. I have not had cognitive testing.  I thought that would be arranged by the neuro.  Not sure that it's something family doctor can arrange.

4.  Yes, thankfully I was seeing a PT for a knee injury (likely caused by onset of gait issues I hadn't noticed yet) when things became more obvious. He picked up my right arm not moving before I did.   He has been more helpful that anyone else in the medical community so far :).

5.  I'm pretty sure the air hunger/breathing issues were caused by an allergic reaction to sulfatrim.  I hope.  I also think  my two episodes of heart rate/bp changes were caused by med reactions.  I have been gluten-free for 12 years -- that's my biggie (not sure if celiac, but gluten is toxic to me).  I've recently decided to cut down on soy, just to see if it's a problem.

6.  Yes, had mra's done and everything completely normal.

5265383 tn?1483808356
by aspen2, Nov 06, 2013
Karryon, I have not had a biopsy.  All of my bloodwork (including inflammatory markers) has come back fine, so I'm assuming that that is what has ruled out vasculitis.  There has been no mention of it since the report he wrote from my appointment in August.  As far as I know, there are no differentials.  I should see if my family doctor can ask my neuro -- perhaps I'm unaware of any left.

No steroids for any of this yet.  I've just been toughing it out.

I thought perhaps there would at least be a differential of functional disorder (unless they don't write that one down lol).  BUT if so .. let's start looking at that!  Something.

Thanks for your input :).

987762 tn?1331027953
by supermum_ms, Nov 06, 2013
Have you heard of "gluten ataxia" ?

Just thinking if you are gluten intollerant, that could be a differential to explore.

Just a thought!

5265383 tn?1483808356
by aspen2, Nov 07, 2013
Supermum, I've heard of that, however because of my obvious gluten reactions I'm pretty militant about no gluten.  I've probably only been exposed to gluten once or twice a year since 2001 (only once in 2013).  I am slightly allergic to dairy but do eat it (in particular in the form of probiotic yogurt) -- however I've never heard of casein ataxia ...

YOu got me thinking though ... I saw a gastroenterologist in 2001 AFTER going gluten-free, trying to find some sort of explanation for why gluten-free/casein-free helped.  Added in dairy again about five years ago.  At the time he wondered if rather than celiac, I was missing enzymes for the last steps in breaking down these things .. something about the precursor to the final breakdown products of gluten/casein being opiate-like or related compounds?  Wish I could remember.

5265383 tn?1483808356
by aspen2, Nov 14, 2013
Okay, results of sleep study in.  Uh ... I failed.  LOL. This will definitely explain the sleep issues, and hopefully this has been contributing to symptoms not going away.

I slept for 4 hours 13 minutes, and did hit all the stages (40 something minutes in REM).  I stopped breathing 29 x an hour (30x an hour is considered severe -- but I did have a pretty good night in the sleep lab).  My O2 saturation dropped repeatedly to 82% ("normal" for sleep is 92-94).  It is probably this that is waking me up -- self-preservation re: my heart and brain.

It's obstructive ... which I suspected since I'm still having weird issues on the right side of my throat ... reduced gag reflex and feels flabby.  I can even tell this during the day ... which the sleep doctor said would mean it ISN'T sleep apnea completely.  So confused.

987762 tn?1331027953
by supermum_ms, Nov 14, 2013
Well those results are a bit of a clue, aren't they? Hmmm about that throat thing, are you sure its not something like a goitre? For an idea if this is even remotely possible have a look at.....

I was just mentioning your stats to DH because he was diagnosed with sleep apnea about 5 yrs ago and used a CPAP, his stats were a shock, somewhere around 57x an hour, and 72% O2 it was the catalyst for him to actually do something about his weight, fitness, diet etc which he really needed to do. I think understand what sleep apnea was all about, using the CPAP for the first time gave him the best sleep he'd had in years, seriously it really helped him getting the dx.    

His was directly due to weight/neck but i have heard of it being related to autoimmune conditions, and others in the community have this due to their MS, but i don't remember anything specific to MS, all I can recall is that it can cause some similar MS sx's and is more commonly due to weight issue.........sorry don't know enough on other causes. Mayoclinic also had something on sleep apnea that might be helpful.......

So what's the plan now?


5265383 tn?1483808356
by aspen2, Nov 14, 2013
Re: weight ... I've lost 40 pounds since January .. slept like a baby prior to March.  In March I was probably down 20 pounds.  Can weight LOSS cause sleep apnea??  I'm only about 15 pounds over where I should be at this point so I really don't imagine it's weight related.

I do have a large nodule on my thyroid ... levels all good .. and the nodule is on the other side, plus two smaller ones on same side (oh, the advantage of all the ms-y tests is all the incidentals you find).  That specialist seemed to think it wouldn't be causing problems.

It heartens me to hear you say that sleep apnea can cause ms like symptoms ... that would be a very good outcome to have everything caused by this one thing :).  Having said that ... sleep issues didn't start until I started my first bout of right side weakness .... better over summer, then have worsened again since second bout.

Still confused ...

There doesn't seem to be a plan at this point.  I'm on a cancellation list for mask fitting b/c my appointment isn't until January. Since I can feel the flabbiness in my throat on the right ... wondering if I should have my ENT look at it.  Dunno.

987762 tn?1331027953
by supermum_ms, Nov 15, 2013
Just a quick point, because i'm pooped out is that the similar sx's are more typically sensory, and cognitive, what your talking about is sounds more physical, muscle weakness on the right type if thing, and i really don't think sleep apnea would be responsible for unilateral weakness.

5265383 tn?1483808356
by aspen2, Nov 15, 2013
Too bad ... however, I'm in trouble memory/executive function-wise, so to clear this up would be a Very.Good.Thing.  I only "slept" 1.5 hours last night, waking up 10 times during this period unable to breathe.  Not sure how long I can function ...

5265383 tn?1483808356
by aspen2, Nov 15, 2013
Two more things, supermum. First, thank you for hanging in there with this.  I really appreciate your input.

Second, just reread my initial post, and there is one change.  My ENT is fairly certain (as certain as he can be based on just history) that my "sinus" issues have not been sinus, but something like trigeminal neuropathy.

That has been confirmed ... on Friday I've started having more typical trigeminal neuralgia pains (triggers, 30 seconds long, etc.).  Thankfully not lightning bolt this time -- more like a buzzing contraction??  Can't talk through it, but can smile :).

987762 tn?1331027953
by supermum_ms, Nov 19, 2013
Your so very welcome!

Hey what ever happened about lyme disease? I was looking at some old posts (someone else) and i noticed you'd written that you'd had a tick bite and treatment back in 09, and i just wondered if you're brought this up with your dr or not.

5265383 tn?1483808356
by aspen2, Nov 19, 2013
I've been tested twice this year .. negative both times.  I don't think I've been bit since '09 -- we're pretty careful now.  And to confuse the issue ... I may now have an actual sinus infection (started with a cold etc.)

Since my last round of antibiotics was over, face pain started up two days later, and everything is escalating (including increase in heart rate??, chest pain, air hunger) .. so sure there's got be something infectious going on .. doc won't put me on more antibiotics.

I'm pretty sure this originated with the tooth extraction in September and has nothing to do with "ms".  Doctor seems to be assuming it's all about the same stuff I've been dealing wtih all year ... I don't feel I can talk to him well at this point -- he is beyond worn out with me (and I totally can't blame him ..)

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