I would like to try 4.5mg but have read that if you have had bad muscle spasms you should not go above 3mg. Maybe if I could reduce the spasticity with LDN I could get rid of the pump??
I am about to commence LDN and am also on betaferon. Apparently the two can safely be taken safely together as both are immune modulators and do not work against each other as previously thought. I have contacted Dr Tom Gilhooley an expert on LDN from Glasgow England and he confirmed this. He treats many of his patients who are on both. I hope this is useful.
Spasticity has always been one of my first (at 15) and on going symptoms. I have had a very happy year on 3.00mg with a baclofen pump controlling pain/spasticity but then spasticity went through the roof with intense stiffness/pain day & night & spasms at night. I am also very allergic so realised there was an allergy involved and have dealt with that and have increased the baclofen pump 3 times (30%) but still have stiffness & some spasms at night. Drs want me to have a pumpogram as they fear there is a malfunction because previously I was so sensitive to baclofen that I could only tolerate the lowest dose.
After stopping LDN for 6 weeks I started losing the benefits I had had for the last year. When I found that I had a sinus infection (which has always triggered MS exascerbations) and pain flares returned & I started losing my sense of smell I have restarted 1.5mg trnsdermally once a week. The interesting thing is that this one small dose immediately gave me back my smell/taste, stopped the sinus infection & pain flares. I think that I seem to have built up a store of LDN and do not seem to need much to top it up.
That severe spasticity is awful have you considered it being an allergy? Mine often present as spasms.
I think I am having the experience where LDN limits/restricts the effect of Baclofen? After a happy year on LDN (with a baclofen pump controlling spasms & spasticity) the spasticity went crazy. I knew there were allergy issues involved too so I addressed those first. I have also increased the pump dose 3 times (30%) and although these measures have improved things I still have difficulty sleeping due to intense stiffness/ pain in hip & leg and spasms. From originally being very sensitive to baclofen where I could only tolerate the lowest dose or I was too weak/shaky to stand I now hardly seem to react.
I really value the greater strength (thanks to LDN) but am just trying to return to my earlier less spastic condition
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