Unexplained deteriorating balance & coordination

afishyfish

I'm a 30 year old male. Since I was about 16 my balance and coordination has been deteriorating. To look at me walking you’d swear I was drunk. I fall over in the dark, I have problems putting key’s in holes, and my handwriting is really bad. I’m on my 4th neurologist and still I’m still none the wiser.
The prognosis is ‘Sensory Neuropathy’. I hate that word; ‘Prognosis’.... “we don’t know what the problem is, or how to cure it. But here’s a name for what you have”. ..... “Thanks a lot!”
I’ve had an array of blood tests, brain scans, spinal scans, lumbar punctures, MRI’s, ECG’s and about a million other things I can’t remember. Nothing showing.
I’ve now started investigating alternative medicines. I’m sort of working on the theory that a mouth full of mercury fillings could be the answer. I’ve since had the fillings removed and started a course of Chelation. I did a challenge test which showed higher than average (yet not huge) levels of Mercury and Lead were found.
So the fillings are gone, and the Chelation has begun. (Albeit early days here) And no sign of any sort of improvement.
This is an extremely long shot, but I’m running out of ideas. Anybody ever heard of anything like this before?
Thanks.

brianthomas

Never heard of it mate. But i'm a big fan of acupuncture. Do yourself a favour and book in for at least a chat and tell them what you said here. They do great work. It's worth a try right? Good luck.

afishyfish

Thanks. I'll give it a lash.

opinion guy

Of the neurologists that you've seen have any of them been Neuromuscular specialists ? Thats who you need

Wicklowrider

Re the MRI's, did you have any done on the neck spinal area? Did any doctor test your reflexs by "flicking" your fingers? I'm wondering if you may have constricted your spinal cord.

afishyfish

Hi.
Yes, have ad scans done the length of my trunk. But thank you. I'll mention it the next time I see my neurologist.

afishyfish

opinion guy wrote: »

Of the neurologists that you've seen have any of them been Neuromuscular specialists ? Thats who you need

I honestly don't know. I assume at this stage (having being refferred time & again), that I'm barking up the right tree. But I'll check this too.

Clean Sheet

Hi,

Have a look at this:

http://thosewithvisualsnow.yuku.com/topic/6321/Vestibular-Disorder-Connection

Think I have a bit of this, it was a lot worse a few months ago but not too bad now. Got a bang to the head playing football and it started, not sure if that's what caused it. Some days are worse than others.

sam34

modnote: please stop suggesting potential diagnoses.

afishyfish

I don't have anything else on that long list. Besides, each day is pretty much the same (just a little bit worse) The moderator is not happy with this thread, so if there are other suggestions I would appreciate pm's. (if allowed)
Not sure about having a 'long term illness' forum which bans diascussing potential diagnoses.
But they're the rules.
Thanks to all.

sam34

afishyfish wrote: »

I don't have anything else on that long list. Besides, each day is pretty much the same (just a little bit worse) The moderator is not happy with this thread, so if there are other suggestions I would appreciate pm's. (if allowed)
Not sure about having a 'long term illness' forum which bans diascussing potential diagnoses.
But they're the rules.
Thanks to all.

we don't allow people to suggest potential diagnoses here because the vast majority of posters are not medically qualified and thus cannot diagnose. taking such medical advice from randomers on the net is dangerous, fullstop.

if you read the forum charter you'll get an idea of what the forum is about.

dlofnep

Hey,

Can I just say that I've had very bad 'brain fog' along with poor health (see my thread undiganosed circle of hell: http://www.boards.ie/vbulletin/showthread.php?t=2055990896) since getting mercury fillings a few years ago in which fit the descriptions you've been saying. I recently had them removed, and I'm about to start natural chelation myself. I've been told that DMSA can be very tough on the body, as it strips many essential minerals - so I'm going to try chlorella and cilantro.

Have to tested your mercury levels? I'm sending on mine to a lab tomorrow - I have to take pre and post DMSA levels. It's worth checking it out so you have a measurable level to check back in in 6 or 9 months from now. Chelation can take up 6 months to over a year to notice a change from what I've seen. I have a DVD on the process of removal and detox, which showed a lady who had very poor brain fog - and felt alot better 6 months after chelation, so stay positive.

Keep me informed as to how you get on.

condra

OP do you have any other problems such as insomnia, allergies, fatigue, tummy trouble, or indeed Ear/Nose/Throat problems?

LegacyUser

Hi fishy dude

I was just wondering what tests you had done for mercury and who is chelating you.

this came up recently on dlofnep's thread and I posted the followin that i'm copying here for you:

hi dlofnep

Regarding mercury, I want to share some information.
The first thing to say is the blood and urine mercury levels are useless for diagnosing chronic mercury toxicity - check any reference book it will confirm this.
The second thing is taking chelators is not a simple risk free process. There is a danger of something called 'redistribution'. In other words the chelators can stir up mercury in the body and it can move around the body and potentially make things worse (turns out chelators are poorly effective - they only remove a small percentage of mercury with each dose).
Now not all doc's who use chelators 'believe in' redistribution. My advise is before starting chelators ask your doc about redistribution - if he says it doesn't exist - walk away.
The good news is you can minimise the chances of redistribution by changing the dosing, dosing times and schedules. The bad news is its tricky and complicated and most docs know nothing about it.

I recommended you check out a guy called Andy Cutler who is a PhD chemist and has several books on the subject.

You can also find more information and people’s stories on some yahoo groups including:
http://health.groups.yahoo.com/group...tal-chelation/
http://health.groups.yahoo.com/group...ose-chelation/

Whatever you do if you do get diagnosed with mercury do your homework first before taking any chelators. Read everything about it. I don't know what your background is but if you have biochemical knowledge it will definitely help. Quiz your doctors. I personally attended one of the 'chelation clinics' mentioned previously in this thread and they f**ked me up good and proper (note this was not the clinic you have attended - but ask the guy about redistribution and ask him about Andy Cutler's frequent dose chelation protocol - if you are not happy with answers walk away)

Also are you sure its mercury - think about your exposure risks - how many amalgams youg ot ? did they make a mess putting them in ? Ever broken any thermometers ? Played with mercury as a kid (sosooooooooo many people seemed to do this!) do you eat alot of tuna ? (if you do STOP, NOW)


Anyhow - good luck with it!

Indeed not taking chelators with fillings in is a point I forgot to make. But redistribution can occur even if you don't have fillings in. Its an inherent part of the process of chelation

Oh_Noes

I had to have a lengthy course of chelation for iron toxicity but I didn't feel any better/worse after it. I didn't feel any different at all really. I do know where you're coming from in terms of the general feeling of steadiness and how it seems to have faded sometimes but I always attributed it to poor dietry habits and sleeping patterns on my part. Yours sounds a lot more serious though.

I have kidney trouble now which is from the amount of iron I had in my blood and that's affecting me in all kinds of ways. I'm not trying to diagnose or prescibe anything but would like to suggest you have a look at some elements of Eastern medicine like yoga and meditation. I know a lot of people who benefit from things along those lines, or even going to your local chinese medical practitioner. Only in a complimentary way though, not as an alternative to whatever treatment you currently recieve.

afishyfish

A-non-y-mouse wrote: »

Hi fishy dude

I was just wondering what tests you had done for mercury and who is chelating you.

this came up recently on dlofnep's thread and I posted the followin that i'm copying here for you:

I'm taking DMSA under dr. Gabriel Stewart
http://www.chelation-ireland.com/

I did a challenge urine test under 1500mg of DSMA
This showed up high levels of Mercury and Lead

By the way, thanks for pasting in that article. Very interesting.

afishyfish

condra wrote: »

OP do you have any other problems such as insomnia, allergies, fatigue, tummy trouble, or indeed Ear/Nose/Throat problems?

Is 'OP' original poster? as in me?
Sorry, not down with the lingo?
If it's me, then no. Just the coordination and balance issues. Everything else is tickity boo.

afishyfish

dlofnep wrote: »

Hey,

Can I just say that I've had very bad 'brain fog' along with poor health (see my thread undiganosed circle of hell: http://www.boards.ie/vbulletin/showthread.php?t=2055990896) since getting mercury fillings a few years ago in which fit the descriptions you've been saying. I recently had them removed, and I'm about to start natural chelation myself. I've been told that DMSA can be very tough on the body, as it strips many essential minerals - so I'm going to try chlorella and cilantro.

Hi dlofnep,

I'm taking the DMSA (3 days on, 11 days off) I take vitamins and minerals to replinish what I lose during the 3 days on.
Side effects are negligible. Possibly a little tired, but as likely to be psychosomatic.
I'm also chelating naturally on the side. (can't hurt)
I'm also taking chlorella and cilantro. But you should consider adding Lipoic Acid to the list as it's believed this is one of the few chelators with the ability to cross the blood/brain barrier.
There's also evidence to suggest Milk Thistle, N.A.C., and vitamin C also chelate mercury.

Have to tested your mercury levels? I'm sending on mine to a lab tomorrow - I have to take pre and post DMSA levels. It's worth checking it out so you have a measurable level to check back in in 6 or 9 months from now.

I did an initial test for levels a couple of months ago, and will be doing another in 2 weeks. (At the end of my third bout of DMSA.)

dlofnep

I've read about Lipoic Acid already, so I'll be certainly including it. Have you tried it yet yourself? Can you tell me how long you are on DMSA? Improvements aren't usually seen until between 6 months to a year from the cases I've read.

Are you getting DMSA on prescription, and if so - what are the costs? The reason why I'm asking is because I'm on illness benefit, and I've been forced to privately follow up this myself, due to poor understanding of it in Ireland. Would I be able to get DMSA on prescription? I suppose, it's something I'll have to ask my GP. I'll drop into him when I get my mercury level results.

I've been taking 3000MG of vitamin C every day, along with milk thistle 3 times a day to prep my body prior to starting chelation. I also drink blueberry juice, which is antioxidant rich.

afishyfish

Yes, I'm taking Lipoic Acid as part of my littony of daily meds.
Last Tues/Wed/Thurs was my second 3 day stint. My third bout starts Tuesday of next week.
No noticible change as yet, but it's very early, as you said.
As far as I know Medical card, disability benefits, etc. are no good for DMSA. Even VHI won't recognise it. Had to stump up for it myself. I'll check how much I paid and let you know.
Who are you seeing regarding this? I'm seeing Dr. Gabriel Stewart.

dlofnep

I was up in Drummartin Clinic. I will speak to a TD if they cannot front the cost of my DMSA. I have about 20-30 euro a week in disposable income, so it doesn't leave a whole lot of space for me. I'm trying to get assistance from the health board with my illness benefit to subsidise the rest, as I only get 147 a week.

I'll work something out. If you could price up the costs of all your supplements and medicines on maybe a monthly basis, that would be great.

sam34

one post deleted.

as before, please do not suggest a potential diagnosis.

opinion guy

AFAIK DMSA is not licensed in Ireland

afishyfish

dlofnep wrote: »

If you could price up the costs of all your supplements and medicines on maybe a monthly basis, that would be great.

Apologies for the delayed reply.

I paid €155 euro for 60 250mg DMSA capsules
About €2.58 per pill.
The dosage is 6 caps per day for 3 consequetive days. Then laying off for 11.
So every 2 weeks, it's €46.45
About €100/month

I don't have a record of what I spend on my other meds (supplements)
These include:

Vitamin B complex
Vitamin C
Vitamin E
Chlorella
N.A.C.
Lipoic Acid
Glutathione
Co-Q-10
Various multi vitamins (usually Berocca)
Metex (Herbal type remedy)
Hy-Pylori (Herbal type remedy)

Prices for the above are easily found on line or in any health store.

dlofnep

Thanks. If it's only 3 days on, 11 days off, then I think that should be manageable if I try buy them in bulk while I have a few hundred euro saved - otherwise I won't have enough disposable income to get it.

Rest of the supplements, I usually have milk thistle, vitimin c, b complex, and multivitamins around the house. I have Glutathione at the moment, but almost gone. It's quite expensive for such a small supply.

cltt97

Not sure if it's still on, but I was up in the Square a couple of weeks ago in Holland and Barret and they had loads of vitamins/minerals etc on a buy one get another for 1 cent offer, so I stocked up big time....

afishyfish

They have similar sales every other month. There's always some promotion on. I'm not knocking h&b. I often shop there myself. But as far as I'm aware their vits & mins can be slightly sub-standard.
Example: Their Chlorella is not broken cell wall. This means the body will find it difficult to absorb. More expensive brands break the cell walls (a costly process - but necessary for the absorbsion of the nutrients)
What appears to be a good price may not be good value.
Caveat emptor.

afishyfish

To anybody still following this thread. I got a diagnosis of friedreichs ataxia.

Scruffles

afishyfish wrote: »

To anybody still following this thread. I got a diagnosis of friedreichs ataxia.

it isnt what anyone wants to hear but 'congratulations' on finaly getting a label to it!

afishyfish

Thanks. It is nice to finally know.

sadie06

Hello afishyfish.

I didn't see this thread first time around, but as I read your initial post, I immediately thought of FA as I have had experience of it in my mother's family. I recently worried that I had late onset FA, but in fact received a different diagnosis.

I'm sorry to hear you have had this confirmed, but I would say embrace the diagnosis and every bit of help available to you, in terms of physio, occupational therapy etc. Our family member turned down most offers of help, which was a shame.

I would also say do not be too scared reading stories and googling, which I'm sure you are doing. My experience from going to the FA association meetings year on year is that everyone's journey is completely different.

Best of luck adjusting, and for the future.