[Checkmate]

Hi, I'm new to the MS thread. I've been on the CRPS thread for a couple of years though. Recently I've been diagnosed with vit. B12 defieciency (142). Nerve conduction studies showed slower nerve conduction. I had all the tests associated with vit. B12 defieciency done the last one was the perietal nerve antibody test. It came back negative as did the folate test and the blood smear. So what is causing my B12 to not be absorbed? I've been taking 5000mg of B12 and it has risen to 500. To go along with all this I've been having tremendous fatigue, which only gets worse the more I do. I am still working thank God, but don't know long I can continue because this fatigue just keeps getting worse. On the weekends all I do is stay inside, I have no desire to do anything. It also seems to me that my cognitive ability is sliding. Before all my symtoms started I was walking 3-5 miles a day and had lost 70 pounds. Now I'm back up to where I started. The fatigue is mostly in my shoulders. It feels as if I have the weight of the world on them. I guess my question is could this be an early stage of MS? Appreciate all opinions.

Thanks for your consideration, Richard Smith

[SallyC]

Hi Richard, welcome to our side of the street. Your symptoms could be the start of a lot of illnesses, including MS. Does your Neuro think that's a posibility?

[Checkmate]

I'm not sure what he thinks. Like I said I've lived the last 3 years with thinking I have CRPS. I still might have it I fit many of the signs for that. All this neuro stuff seams to be all connected in one way or the other. Different people are affected in many different ways. I just know all my symtoms not just the fatigue are getting worse. I just got the results from my perietal antibody test and they were negative. So what is causing my B12 to be low? I guess we figure that out and we might have a few answers. I read that if you have a demyelinating neuropathy that the body will use up its stores of B12 in an effort to slow nerve demyelination. They did a spinal tap but I'm not sure what he was checking for. My neuro doc isn't the easiest person to communicate with. He didn't even now what glia is.

[Mariel]

Richard, there are other diseases than MS which could cause your symptoms. I do not know what CRPS is. I have another disease which affects nerves, Porphyria. I probably have that in addition to MS. It's worth checking out online as most neuros don't even consider it. But they should. It should be ruled out even if it is rare.

[SallyC]

Originally Posted by Mariel

Richard, there are other diseases than MS which could cause your symptoms. I do not know what CRPS is.

Complex Regional Pain Syndrome

[Mariel]

Thanks for the definition, Sally. If Richard has a lot of pain it might be Porphyria. I don't have as much pain with porphyria as I had when young, as the hormones of youth are one of its worst triggers. When men get it, like Richard, it is rarer but more difficult to handle.
I was constantly looking for pain help, and failing, since I could not take most medications for pain. I finally found one when I knew I had porphyria and found the right one on a safe/unsafe drug list...but I struggled with little help and lots of ridicule for years. I tried every New Age technique available...meditation, Reiki, Jin Shin Jyutsu, Touch for Health, and every off-label pain med, such as Elavil, which caused dramatic but short paralysis. Jin Shin and Touch for Health were among the things that helped.
My husband was kind to me throughout this long search. I miss him and I know you miss your DH, Sally. Do you hope to meet him again some day, as I hope to meet mine?

[BethO2L]

Could this be CFS (Chronic Fatigue Syndrome).

It's a neurological disorder that is viral based. It can cause any number of issues including fibromyalgia.

There's a great doc at Stanford University doing great work with this. If you go to youtube and put in stanford univ and chronic fatigue syndrome you can view a couple of videos that he's has done, one is an hour long presentation he's giving to other MD's...it's very interesting...you might look into it,,,can't hurt..

I hope you figure this out...hang in there..

[SallyC]

Originally Posted by Mariel

My husband was kind to me throughout this long search. I miss him and I know you miss your DH, Sally. Do you hope to meet him again some day, as I hope to meet mine?

Yes, I like to kick him in the shins for leaving me so early.

[Checkmate]

Thanks everyone for your opinions on this. I just got a clearer picture of this. I have a dx of CIDP or chronic inflammatory demyelinating polyneuropathy. They want to start me on IVIG. I had also looked up information before I got the call saying I had the protein in my spinal column. Has anyone had IVIG? I know it is expensive so the insurance will have to pay or I won't be able to have it done. Again thanks all. You know sometimes it takes awhile to get someone to listen to you. Peace and love.


Richard

[Mariel]

Richard, we love to help and receive help, so come back and tell us what they find. It's fascinating (and cruel) that you have this CIDP. That sounds like an umbrella dx for several or many diseases. But now you know you have something--not imagination. I have not taken IVIG but some here have, mostly not for MS but for other things they have. Most of us, I would say, have more than one disease, especially if we've been "collectors" for some time.