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Dxed.  Huh.

Feb 05, 2016 - 10 comments

As of January 21, 2016.

Limbo update

Jan 09, 2016 - 2 comments

I see two neurologists this month.  Update from general neuro appointment is here ->

I see my ms neuro on the 21st.  I also have a referral to a physiatrist which I'm grateful for, since dx or no, I need help with movement etc.

I've been having an incredibly difficult time this winter emotionally with respect to no answers. I would have thought after three years I would be settled in limbo, but it's actually been tougher recently.  Probably because I continue with three relapses a year, and hit roadblocks because there is no diagnosis.  I dislocated my knee August 2015 because of foot drop and muscle weakness -- lengthy recovery and can't be braced because of the confusion of what is actually wrong.

This year, relapses in March (6 weeks -- bladder/legs), end of July (3 weeks palate weakness/swallowing/choking/speech but the lack of sleep due to this relapse and the knee issue ended up causing 3.5 weeks of vision issues in September), and December (4 weeks -- cognitive/speech and massive fatigue).

It gets old :P.

Observations on the use of low-dose naltrexone after 5 months

Oct 11, 2015 - 2 comments



Low dose Naltrexone




transitional cell carcinoma






neuropathic pain


Bladder Cancer

I have been on LDN now for almost 5.5 months.  I was prescribed it for neuropathic pain.  Although it helped somewhat right away, it did wear off -- after a few months, however, my pain is well managed.  I have tapered off a few times thinking the pain is gone and discovered, no, it's still there.  Although I still have issues, this stuff helps me function, and for that I'm grateful.

I've also found it helps my mood (and did so at the very lowest level I tried of 1.5 mg).

The most intriguing thing?  I was dxed (seperate from neurological issues) with recurring transitional cell carcinoma fall of 2014 while being worked up for retention issues.  I've had recurrences at every follow up cystoscopy.  End of April 2015 my urologist booked me for a second surgery to deal with a new tumour.  I started LDN May 1.  By the time of surgery at the end of May the tumour had become an undifferentiated mass of tissue, and no cancer cells were found at biopsy.

Early October, I had my most recent follow up cystoscopy and there were no recurrences for the very first time.  My urologist was thrilled -- he feels the LDN is acting as an immunomodulator -- not a "cure", but halting tumour growth.  I have had no other treatment for TCC, so although this is anecdotal, it seems to be the case.  I will continue to be followed, and will update either way.

I do have side effects from the LDN.  Most people don't, other than insomnia when they first start taking it.  My adverse affects are are insomnia (that does not disappear) and increased spasticity of my right (weak) side.  I have read cautions that those with ms should take no more than 3 mg / day because of increased spasms/spasticity.  Well, those with ms and me, since I don't have a dx :P.

It is incredibly finicky to find the "right" dose -- it's not like most meds.  The normal taper up suggested is 1.5, then 3.0, then 4.5 mg.  None of those levels worked for me.  Mood enhancement started at 1.5 mg, but no pain control at 3.0 mg.  By 4.5 mg, my sleep was toast and I was awakening in the morning with my right leg immobile ... awkward.  I had to go back down and taper up by .2 mg, then .1 mg.  My "sweet spot" is 3.6-3.7 mg/day.  I really recommend the liquid to start for sorting out best dose.

I recently did switch my dosing to the morning rather than evening, and it is helping with the trouble sleeping I've had.  Morning dosing is not recommended due to the belief that the endorphin production increase happens during sleep.  I hope to try to move back to night time dosing in the future.

I remain undiagnosed, so therefore have no conventional treatment for ms or whatever mimic this is.  It is good to feel like I am doing "something" and am relieved to be rid of the neuropathic pain which was disabling.  I was very sceptical that LDN would do anything -- it doesn't work for everyone (in particular if they don't tough it out in finding the right dose).

Plus, I am grateful for the multitasking ability of this stuff.  I am down to two medications plus some supplements (LDN and a bp medication).  It's a positive change from the pharmacy I've been rxed over the past couple of years.

I am not a doctor.  The autoimmune and ms uses of LDN are experimental.  No guarantees.  Just saying :).  My neurologist originally called it snake oil, but my GP was willing to take the risk.  Recently I found out my new gynecologist thinks it's a "great" medication and prescribes it.  There are various private cancer clinics in Canada and probably elsewhere prescribing it.  Although it's an off-label use, it's not the first medication being used for pain that's off-label (Cymbalta, gaba, Lyrica etc.).

Anyway, just wanted to do an update.

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.