Creatine Kinase+c reactive protein+muscle atrophy

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Creatine Kinase+c reactive protein+muscle atrophy

Postby momo on June 5th, 2012, 11:02 am

Went to consultant neurologist at National Hospital of Neurology (UCH London). Up to now he wrote me off as having fasciculation syndrome with Fibromyalgia and forgot about the Ehlers-Danlos hypermobility in every joint!. He then looked at my hands and noted the significant slowing of both ulnar nerves. In both hands my index and middle fingers are bending inwards and the little fingers stay straight. Going on with the other issues - the leg that had the most problems with the cramp and fasciculation syndrome now has marked muscle atrophy in the calf. The foot now has a high arch and is rotated outwards so I walk on the outside of the foot. The left leg now experiences more of the cramping ESPECIALLY during exercises and anytime the feet point.

He was most interested in knowing which rheumotologist sees me at UCH Hypermobility clinic and now thinks it is rheum not entirely neuro. None of the physiotherapists want to treat me - rheumotology because the BFS starts, Neuro because they can't do much about it because the minute I try to exercise like in Pilates the cramps come on. I have to keep my feet relaxes at all times.

At night - it might be BFS my arms clench tightly against my body from the hand to the shoulder and the legs are extended outwards which invoke the cramping in them. The night splints somewhat help in that the feet still extend but the pressure sends impulses back. My teeth are clenched. He doesn't think it is epilepsy. But He doesn't know what it is - said maybe it could be the massive doses of Gabapentin 2400 mg per day.

Does anyone else have these along with elevated creatine kinase, c reactive protein and immunoglobulin increases in alpha-2 faction, beta 1 & 2.

I don't think this is bfs, fibromyalgia nor EDS. Although I do also have hair loss (loads out in the last 9 months when the hands and foot started going wrong), dry skin-eyes-mouth. And high frequency hearing loss.
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Re: Creatine Kinase+c reactive protein+muscle atrophy

Postby ImOK on June 5th, 2012, 12:40 pm

Sorry to hear about your problems. Early on I was tested with the thinking that I had some kind of immune system disease but it didn't work out that way - there seems to be a lot of them though and many have cramping and twitching as a symptom. We've had a few from here Dx'd with some (Hashimoto's, Sjogren's syndrome) and also there was a guy that had a inability to process a protein which caused his twitching and atrophy. Why I'm saying this - it seems to take a really good doc with research experience to sort this stuff out as none of it is 'common' but it can be done as we've seen. I know many who have had to really go the circuit before they were Dx'd so you have to persevere - try asking the doc at your next appt ''with all that you see in my tests and symptoms, if you had this occurring to you, where would you go next for help?'' Sometimes doctors, like the rest of us, get frustrated and don't have answers but if you are direct like this at least you will have a path to follow.

You didn't say why you are on massive doses of Gaba - did he give you an alternative or any suggestions? Press him on it. Over-medication causes its own problems but this is so highly variable to the individual. My neuro said that time is also a factor - no client should stay on one Rx for long as the body adapts and then they end up with all the problems of over-medication and few of the benefits.

In the meantime help yourself by doing some breathing techniques and meditation - it really does calm the nervous system. Before doing your Pilates, do a gentle warm up so your circulation is revved a little. Keeping moving will always be to your best interest even if it is not what you were once used to or if you have to take it slowly.

Best of luck and don't give up.
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Re: Creatine Kinase+c reactive protein+muscle atrophy

Postby raindog on June 5th, 2012, 7:02 pm

ImOK wrote:Sorry to hear about your problems. Early on I was tested with the thinking that I had some kind of immune system disease but it didn't work out that way - there seems to be a lot of them though and many have cramping and twitching as a symptom. We've had a few from here Dx'd with some (Hashimoto's, Sjogren's syndrome) and also there was a guy that had a inability to process a protein which caused his twitching and atrophy. Why I'm saying this - it seems to take a really good doc with research experience to sort this stuff out as none of it is 'common' but it can be done as we've seen. I know many who have had to really go the circuit before they were Dx'd so you have to persevere - try asking the doc at your next appt ''with all that you see in my tests and symptoms, if you had this occurring to you, where would you go next for help?'' Sometimes doctors, like the rest of us, get frustrated and don't have answers but if you are direct like this at least you will have a path to follow.

You didn't say why you are on massive doses of Gaba - did he give you an alternative or any suggestions? Press him on it. Over-medication causes its own problems but this is so highly variable to the individual. My neuro said that time is also a factor - no client should stay on one Rx for long as the body adapts and then they end up with all the problems of over-medication and few of the benefits.

In the meantime help yourself by doing some breathing techniques and meditation - it really does calm the nervous system. Before doing your Pilates, do a gentle warm up so your circulation is revved a little. Keeping moving will always be to your best interest even if it is not what you were once used to or if you have to take it slowly.

Best of luck and don't give up.


Some very good advice here. I have had good results in respect to severe cramps with new era mag phos

http://www.amazon.co.uk/New-Era-Mag-Pho ... 725&sr=8-1

i take 3 a day, i also have a pint of water with 1 teaspoon of baking soda/ bicarb every morning. Worth a try. :wink:
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Re: Creatine Kinase+c reactive protein+muscle atrophy

Postby dreadpirateroberts on June 9th, 2012, 11:14 am

I have had elevated creatine kinase (500+) and moderately elevated c reactive protein (5+, then 1.6 on retest). My neuro sees no problem. I work out a lot and get cramps in my feet after the work out. I take 20 to 30 mg of baclofen after a workout and it really helps with cramping feet. My dx is actually cramp fasciculation syndrome. Ask your doctor about baclofen.
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Re: Creatine Kinase+c reactive protein+muscle atrophy

Postby BFSBurger on June 13th, 2013, 1:54 am

ImOK wrote:Early on I was tested with the thinking that I had some kind of immune system disease but it didn't work out that way - there seems to be a lot of them though and many have cramping and twitching as a symptom. We've had a few from here Dx'd with some (Hashimoto's, Sjogren's syndrome) and also there was a guy that had a inability to process a protein which caused his twitching and atrophy.

Was just searching the archives, and ran across this post. Found these comments to be interesting. Never heard this from anyone else here before. Can anyone confirm or deny the above information? So strange to me that there are no hints or ideas as to what BFS may be, but I run into posts like this which provide just that.

B
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Creatine Kinase+c reactive protein+muscle atrophy

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