I've had very bad pain and unpleasant feelings in nervs. I've been taking two months Naltrexone, Baclofen and Sorbitol.. during two last weeks I haven't had pain anymore. I can't say if it's because of the combo but if the pain will not come back or will be reduced then I would say it's it. Then it means that the inflamation in nervs has diminished. That would be a good sign.
Oh, HM this is tremendous! I'm so very glad that this is working for you! This is one of the landmark medical breakthroughs of our time!
It seems that the low dose combo of these 'well used' meds would present much fewer side effects than a single high dose med! I'm so excited for ALL of you!
I urge you all to get your Doctors on the ball with this info!
I've been on Neurontin / Gabapentin for years and it works good but not great? I will try this to see if my nerve endings will quit screaming 24/7. Thx 4 the info
Tremendous news for you. I am so glad you have found something that helps. Does it help with any other symptoms other than pain?
Beside pain I've different "sounds"...very unpleasant "feelings"..on my nervs..difficult to describe, but everything is now quite silent.. I wouldn't say 100% but 98%,so, mostly silent. I've also some bad symptoms related with cmt on autonomic nervs side... that's too 98% silent now. I really hope that this symptom will not raise again, it's so difficult.
HM,
I also am a moderator in the Myositis community of Ben's Friends and this disease also involves muscle wasting, though the cause is autoimmune, but who knows, if it strenghtens muscles for CMT1A, it may do the same for them. In any case this low dose med combo seems to be a new direction for the future of medicine.
http://medical-dictionary.thefreedictionary.com/Myositis
Thanks again for all of you valuable information and personal experiences. I am helping to spread the word.
SK does an alkaline diet help at all? It's just you mentioned inflammation and that's generally caused by an acidic body.
HM I just wondered if it would help with numbness and/or balance problems - these are my main problems. I am probably very lucky my pain levels are fairly low.
This medication needs time to help I think, so, the nerves will be better in time. My feet are quite numb and I can't walk without braces.
PCM said:
SK does an alkaline diet help at all? It's just you mentioned inflammation and that's generally caused by an acidic body.
HM I just wondered if it would help with numbness and/or balance problems - these are my main problems. I am probably very lucky my pain levels are fairly low.
HM On bad days I can only walk very short distances with a walking frame. On better days I can walk with a four prong walking stick but again only very short distances. My feet are starting to curl under at the outer sides which really is making things a lot worse. It is quite isolating being like this as I can only usually go out two maybe three times a week. In between times I get very fatigued.
I
My genetic autoimmune illnesses came into full force after the third read end car accident, that I could never get over, it took about 7 years to determine that's what it was, and which ones it was.
In the beginning, my Chiropractor had me do the elimination diet, making sure I had no food allergies, so it was dairy, then it was gluten, nuts...There were none determined, so I went back to a regular diet. I asked my Rheumatologist about it years later, and his response to an anti-inflammatory diet was that the disease was pumping out so much inflammation that even the strictest of diets would be like a drop of water in a swimming pool. That unless there was an allergy detected there was no sense in projecting more stress into my life!
That said, there are people all over the boards, in various groups, who swear by this means of eating, so I suppose it's an individual thing.
My husband has diabetic neuropathy and I was giving him sublingual Vit B12, COQ10, and expeller pressed evening primrose oil, and it really helped, but after a while he didn't want to take it anymore! He didn't like the taste of the oil, but they are also available in gel caps. Seems there was another one, but it escapes me!
I understund what you are talking about.
PCM said:
HM On bad days I can only walk very short distances with a walking frame. On better days I can walk with a four prong walking stick but again only very short distances. My feet are starting to curl under at the outer sides which really is making things a lot worse. It is quite isolating being like this as I can only usually go out two maybe three times a week. In between times I get very fatigued.
I
Glad it works for you, different drug and combos work differently for different people. I felt more stubbly/groggy on Baclofen, and tried Neurontin, and was just trying it again last year prior to knee replacement (which by the way he cut the pain out for me, I was bone on bone) for it is a newly recommended for nerve pain, by passed neurologist for C-M-T sleep apnea, then I went to University of Michigan C-M-T clinic. I use Mirapex and Clonazepam for restless legs and periotic leg movement.
I have that same way,.I use wheeled walker (one special for height in the kitchen), cane or power wheelchair. Good days, Bad days here too
HM said:
I understund what you are talking about.
PCM said:HM On bad days I can only walk very short distances with a walking frame. On better days I can walk with a four prong walking stick but again only very short distances. My feet are starting to curl under at the outer sides which really is making things a lot worse. It is quite isolating being like this as I can only usually go out two maybe three times a week. In between times I get very fatigued.
I
Oh Rita, that bone on bone of the knee must have been excruciating! My husband has needed knees replaced for decades, and he just keeps putting it off, he is not one to be 'laid up', but it is inevitable!
Glad it was a success for you!
SK