This is another update on my health journey, especially for those diagnosed with Cramp Fasciculation Syndrome/Peripheral Nerve Hyperexcitability. I hope it can add something worthwhile to your own healing journey.
Last week was my second appointment with the neurologist and her insights coupled with everything I have learnt so far in the natural/alternative health field has made me think more deeply about the nature of this disease.
What I have learnt
- My blood tests confirmed that I have CASPR2 antibodies – these are specific antibodies which attack the peripheral and autonomic nervous systems. According to my doc this is separate to the CNS but I don’t see how this can be. I didn’t have VCKG antibodies (potassium channel) however, she said that CASPR2 is more indicative of PNH than VCKG. Apparently only about 40% of people with PNH test positive for VGPK. What this means is that you shouldn’t just settle for a VCKG test or a negative result, make sure you get your CASPR2 checked also.
- Secondly, she admitted that there is an association between gluten sensitivity and neuropathy however she did not understand how or why. She tested me for Coeliacs (celiacs) disease, however as have more or less not been eating gluten I wonder whether anything will show. I also suspect that I may have Non-Coeliac Gluten sensitivity (NCGS) as I did a food intolerance test for IgA, M and G antibodies and two of 3 of them came back positive against gluten and wheat and also corn. It possibly means I have to be gluten-free for life (cry, sob). I have noticed a big difference eliminating gluten and other grains, however, and it’s quite a large one. I have had consistent re-lapses generally ever 2-3 weeks. In all honesty, this is better than the continuous feeling of being unwell, but it’s also quite frustrating and tiring. I believe I’m getting closer to the mechanics of it all, one thing I have read is that NCGS are more sensitive to gluten than normal coeliac in that because it is chronic rather than acute it takes longer to go away (I think). I will have to find the source of where I read that (if you’re interested please email me).
- Thirdly, she mentioned sleep disturbance. This is quite high especially with people with the CASPR2. My doctor believes that the antibody must also be having a knock on effect in the Hippocampus (see I said not disconnected from CNS/brain). I have a lot of vivid dreams, I always have had from a young age but they are often prophetic in nature (less times than most) which I don’t want to lose. However the majority of them are me running, jumping, being chased, fighting etc which often means I am in fight or flights while I’m asleep. Obviously in the morning the spasms are worse and I don’t feel like I’ve had a good night sleep. So I read an article about ‘lucid dreaming’, which is basically learning to have conscious control in that unconscious state. I found that I could wake myself up when the dream was getting bad, or I could begin to say ‘No’ which really improved the quality of my sleep.
OK this last bit will be quick as I need to round-up and go out. I’ve been thinking about everything I’ve been learning about the body and how it relates to this condition. I often feel like I’m pulling threads out of a massive tangled ball of wool, trying to find the starting point. I have come to the conclusion that this disease is multi-faceted. I recall that I went to see my Dr in my teens complaining of these symptoms but they would only last about 1-2 weeks max before going away for ages. At age 19 I was diagnosed with depression and that lasted up until I was about 24. I fell ill at 28. When I was 13 I had a trampoline accident, it was quite bad and my back was never really the same.
In 2009 I hurt my back again and just before I fell ill in 2008 I came down with the flu and was under tremendous amounts of stress around that time. I also recall suffering from really bad constipation as a child and having to go to the hospital because of it – bowel movement has never really been regular up until I really began to change my diet. Oh yes I have mild dyspraxia. These are the things that I can remember, but I say all of this because I believe that these things are inter-linked in some shape. When I ask other people diagnosed with the same illness they seem to have many if not all of these similarities.
There must be something in it however I don’t know the start or end point. So far I have tried many of the links below independently but not in any integrated form, of all of them so far the ones with the greatest effect are definitely dealing with the emotional and oxidative stress and immune system through stress management and GI through diet. I’m still new to GI so still learning but I am going to go deeper into this before moving on.
I truly hope all this information makes some sense to you and that it will be a blessing also. I will check back soon – don’t forget to check out this page with a link to contact me if you so wish.