MRI's and brain lesions in CFS patients

[moonchild]

hi mithriel, thanks for the reply and i'm interested to hear a bit of a different perspective on the results and readings of them...haven't actually seen the report or the scans or anything yet, so yes, all i know is what the receptionist told me. which i think was 'that there were no focal abnormalities to explain the symptoms'. i'd assumed that if any lesions showed up the neurologist would have wanted to see me. who know though, maybe she does know about these little ones and CFS.

was interesting too, i was talking to a friend who is a radiographer the same day and she was saying that so much depends on the person who is operating the system and their expertise and experience (she's hoping to do the MRI training soon and i was surprised to find that it's a couple of years long).

bring on that day of understanding, answers and certainty!!

 

[lostinthedesert]

I had lots of neuro symptoms - megaheadaches, vertigo, twitching, spasm, loss of coordination, memory and vision problems. My mri appeared normal but my mr spectroscopy showed overall reduced oxygen utilization in my brain and one quadrant that was worse than the others. Many of my neuro problems were helped by cholestyramine treatment and abx for the super Staph i was carrying. I still have fierce Mcs 8( . neuro stuff comes and goes but not like before .... Dr shoemaker said that many of his Cfs and mold patients show ubos but they frequently seem to go away with treatment. He sees many folks who were told they have ms. Peace, S

 

[moonchild]

hmmm, had never heard of shoemaker and the whole mold theory before in all the time i've been sick - and suddenly they're both popping up over and over...what are Mcs? (finding i'm not up on half the lingo being used on here. feeling very ignorant about something that's been part of my life for SO long)

 

[gracenote]

hmmm, had never heard of shoemaker and the whole mold theory before in all the time i've been sick - and suddenly they're both popping up over and over...what are Mcs? (finding i'm not up on half the lingo being used on here. feeling very ignorant about something that's been part of my life for SO long)

Hi moonchild.

I think mcs is referring to multiple chemical sensitivity.

Here is Shoemaker's website.

http://www.biotoxin.info/home

I've learned a lot since coming on these forums. There's a LOT of good information here. It can be a little overwhelming at times.

 

[moonchild]

thanks gracenote - knew it was going to be something that would make sense the second i saw it!

 

[Frickly]

I had symptoms identical to MS before I started my treatment. I had an MRI and the doc said there were no lesions but did find one spot that looked like an old trauma to the head. Did my mother drop me on the head when I was a baby? Hmmmn.....

 

[lostinthedesert]

Yup. That's it. My phone seems to insert caps randomly. Sorry if that was confusing. Shoemaker helped me but certainly did not cure me. He does best on folks who have not been ill for too long. I have been ill since at least 1986. I have only used his more proven treatments - csm, abx and also tried epo (helpful but too expensive). after years of taking csm my neuros still get worse if i do not take a maintenance dose of csm - leads me to believe that i have an internal source of neurotoxins. Peace, S

 

[moonchild]

XMRV could potentially be causing neurotoxins internally couldn't it?? i've been ill for a long time too so wonder about the whole shoemaker thing...can't figure out how you know if you even have that type of mould or not - certainly don't want to be going and walking away from my home with nothing on the offchance it could be that.

and back to the trigeminal neuralgia that was brought up earlier...everything i've read tells me that this is a sharp shooting pain? my face pain is constant (although it flares like everything else of course) and very generalised. more of a dull sensation but very intense, and sometimes throbbing pain. so severe though that it means talking is incredibly painful and even upsetting.

all so complicated. i feel like a detective trying to put the pieces together, but still feel i'm no closer to the answer. and not sure how much longer i can deal with being in this much pain.

 

[gracenote]

XMRV could potentially be causing neurotoxins internally couldn't it?? i've been ill for a long time too so wonder about the whole shoemaker thing...can't figure out how you know if you even have that type of mould or not - certainly don't want to be going and walking away from my home with nothing on the offchance it could be that.

and back to the trigeminal neuralgia that was brought up earlier...everything i've read tells me that this is a sharp shooting pain? my face pain is constant (although it flares like everything else of course) and very generalised. more of a dull sensation but very intense, and sometimes throbbing pain. so severe though that it means talking is incredibly painful and even upsetting.

all so complicated. i feel like a detective trying to put the pieces together, but still feel i'm no closer to the answer. and not sure how much longer i can deal with being in this much pain.

It is all very complicated and frustrating and time consuming and difficult. Here are some possibly helpful links for you.

Have you done Shoemakers VCS test? You can do it online. You can see how you test for neurotoxins. Online VCS Test

And there are kits you can get to test your house for molds.

And moonchild, have you seen this thread? It talks about trigeminal neuralgia. Chronic Neuropathic PAIN & topical capsaicin

I think we need to do these things one step at a time knowing that we can only do what we can do. That's all. And that's enough.

 

[jackie]

Thanks Grace! I hadn't seen that link re: neuropathic pain and capsaicin until you added it here for Moonchild! Although I also have Trigeminal Neuralgia...I desperately need something for my post-herpetic pain (chronic shingles). In particular my upper shoulder area...which feels like a 3rd degree burn or like that bad sunburn (you?) described?

And Moonchild...were you dx'd with only T.N. or another facial nerve problem as well (such as Bell's Palsy or something? or any shingles - they aren't always apparent if they are inside along the dermatomes (?), I believe. I feel for you...so awful when you can't escape this never-ending pain!)
jackie

 

[moonchild]

hi jackie...no, i haven't been diagnosed with anything in terms of the facial pain. have seen a couple of specialist dentists about the possibility of TMJ and was referred the the craniomandibular physio i've been seeing for the last 9 months or so. she was so sure she'd be able to help me in a couple of sessions but pain-wise we're really not much further ahead now. she talks about the trigeminal nucleas (sorry, can't spell today, trouble seeing the screen) and thinks it a disturbance of that which is causing the symptoms. from what i've read about TN it doesn't sound like what i have. and the capsaicin i have to have another look at - think i might be too sensitive to the main ingredient.

no-one really seems to have any ideas, or rather the ideas they've had have all been proven not to be the case and there don't seem to be any more ideas about what may be causing it. the neurologist thought perhaps it was 'just' the fibromyalgia pain choosing to concentrate there for now. whatever it is i need something to help SO much.

anyway, off to the physio this evening and will hopefully get to see a copy of the MRI report then if it was sent to her as requested. will ask her more about TN too.

(hope this makes sense! not up to even reading it back today i'm afraid and sorry if i've missed something)