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Limbo update June 2015

Jun 12, 2015 - 2 comments

Wow, I am tired of this.  But good news first -- paraneoplastic panel was fine so I don't have neurological paraneoplastic syndrome.  On one hand I hoped it was an answer -- but it wouldn't have been a good answer at all, according to my neurologist.

He is now fixated on my current peripheral nerve sx, and has decided that my previous EMG's may not have been done properly.  Have to have them redone.  He stills says not CNS despite ... well ... lesions ... neuro opth saying central ... him telling me he thought it looked like MS from December 2014 onwards (until my lumbar puncture showed up clear in March 2015) etc.  But during our conversation when I asked if PNS would be responsible for different signs I've had in the past ... well, no.  Such as the pyramidal signs, etc.  oh yes, and despite that all this started up in March just after my LP and HOPEFULLY will be coming to an end shortly.

Did I mention I was tired?

He is referring me to a physiatrist for pain control and help with gait, a general neurologist with more experience in neuromuscular disorders (I suppose he is turfing me), and is recommending to my doctor I be rxed cannabis -- the pill form that's low key lol (?!?!?).

Meanwhile, I have a fever which is increasing my spasticity. Leg and when it's bad I'm even having trouble with my arm. He wanted to know if my stiffness depended on how fast I moved my arm ... I replied .. I have no idea?  I know that after acupuncture this week, I couldn't move my leg -- my PT did and commented it was rachety.  no idea what that means ...

Yup.  Tired.  Rest of life is good, but this process, which I thought I had come to terms with ... well ... nope.

The LDN continues to work although it is a bit finicky.  I think I increased to too high a dose, so am going to taper back a bit (funny stuff in that MORE is not better -- you have to find the sweet spot for your system).  I upped to full dose at 4.5 mg and am not sleeping as well.  Back it goes tonight.

Anyway, still floating :).  But tired.

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by coldnhot45, Apr 08, 2019


I just wanted to say be glad you do not  have paraneoplastic syndrome!!   I have neurological paraneoplastic syndrome and I would rather have anything.   I see your post is from 2015 so I hope you have more answers now than the date of your post.  


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by aspen2, Apr 08, 2019
Thank you for asking!  

I received an ms diagnosis January 2016.

My diagnosis was complicated by symptoms due to magnesium deficit, and a very skewed immune system already.

Pressure from my neuro opthalmologist and a second neurologist (the neuromuscular neuro referral I mentioned above) “helped“ the diagnosis.

I had permanent disability at dx but The MS Gym has helped me progress in the right direction. I’m well managed but complicated.

I’m sorry to hear that PNS Is your issue; my understanding is that dealing with the cancer will also relieve the neuro symptoms?

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