AnonymousJanuary 2, 2013 at 9:24 am
Golly I hope other people find this site difficult to navigate around because I sure do. Anyway time to get to the bit.
Today I went to a new neurologist who wants me to go and have more blood tests to make sure I do not have mitochondria. My interpretation of his explanation of this is the body has difficulty converting oxygen which results in a build up of lactic acid. Another of its symptoms can also be inflammatory neuropathy. But like so many things mitochondria can be hard to pin down. Has anyone else had this explanation or hypothesis put to them. The blood tests include a lactic acid and liver function tests.
January 3, 2013 at 6:48 am
I just saw this post after responding to your other. The comments will overlap some.
I can guarantee that you have mitochondria, we all do. Without them, we would die. Their function is intimately linked to the energy production in the cells. My guess, based on a general understanding, not specific knowledge, is that the neurologist is concerned that you have some mitochondrial-based neuropathy, which is a common type of mitochondrial disease. Mitochondrial disease is a bit more common than CIDP, so it is not unreasonable to suspect a mitochondrial disease. I hope you get your test results back soon.
Have you had a nerve conduction velocity (NCV) study done? This is the type of study that can help distinguish between demyelination and other types of neuropathy. I believe that it is generally considered an essential test in diagnosing CIDP, so I presume you had one. Do you know what the results showed?
Godspeed in finding a clear diagnosis,
AnonymousJanuary 3, 2013 at 7:37 am
Have had two nerve tests and both showed an absence of f waves and some other because current neuro said it was an odd combination. Have to wait 6 weeks for test results. Current neuro wants to wait for results because if they do show mitochondria issues he will start me on a vitamin cocktail tail and n q10. He said that even though he felt i had cidp because I could still walk IVIG would be like using a shotgun to get rid of slugs. I have to be honest and say it is all very frustrating and i really miss my previously very active lifestyle . the other thing mentioned that you might find interesting was his opinion that there is a small gap between peripheral nerves and the central nervous system and that the inflammation had slipped through this gab causing the weird head sensations. Again many thanks for your responses and wish you all the best.
January 4, 2013 at 5:57 am
I think your doctor is taking some shortcuts in his explanations to you. Yes, there is a gap between the CNS and PNS; the communication occurs across synapses. I am not sure what he means by the inflammation slipping through, but for now, I would just let it go.
As far as IVIg being a shotgun to get rid of slugs, he needs to realize that unless you take action now, things could get worse. Of course, they might not, but it seems like you should have some sort of treatment to keep maximal function. If your clinical presentation, NCV, and CSF results are consistent with CIDP, then there is no good reason not to use one of the standard treatments now. If you can tolerate steroids, suggest to your doctor that you try them now. They are cheap and often effective and could be a good stopgap while you wait for the mitochondrial results. If they work and you have no mitochondrial disease, then you should suggest that he switch you to IVIg as steroids are not the preferred treatment. Refer him to these guidelines: http://www.pnsociety.com/Guidelines_CIDP.pdf
Godspeed in getting treatment soon.
AnonymousJanuary 16, 2013 at 7:04 pm
It would be better to have IVIG or at least steroids now when it might help but waiting till you can no longer walk for treatment is totally ridiculous and medically unsound. There have been other forum members who’s neuro only gave them IVIG when they completely collapsed and their CIDP was progressing without the needed the treatment. CIDP does response to most treatments and you deserve to have the available treatments.
You may need another neuro who understands CIDP.
AnonymousJanuary 17, 2013 at 10:57 am
I think you are right I much prefer the proactive approach as opposed to this slow yet consistent progression. 6 months ago I was standing on the start line of a marathon, now I can’t even go up a flight of stairs or clean my teeth without having to stop. Many thanks for your input appreciate it.
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