twitching, short of breath, irritated bladder, etc - BrainTalk Communities - Neurology Support Groups

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aklapMember Posts: 128From: ripon, wi, usaRegistered: Jun 2002

posted 11-09-2003 10:47 PM

Hi Kingfisher, I started out in the PN board too. Actually before that I lurked at the www.aboutbfs.com boards (Benign Fasciculation Syndrome). I was having all sorts of fascics (plus PN). After going gluten free - the fascics disappeared almost completely!! Recently I had been consuming some gluten that I was un-aware of...and the twitching came back. Since I figured out I was consuming gluten and stopped it - poof - twitching gone. As well as the additional burning, tingling and a host of other fun stuff. Do you have burning, tingling, pain, numbness? Fascics are a common thing with PN. It's not uncommon to be symptomatic and pass the blood tests. If you haven't done so already take a look at "The Gluten File" post by JCC - she's the resident expert here. Lots of good info there. Boy, if you have a family history - I think I'd definately give it another try. This is a good board for that. Very helpful, very caring. Good luck in your quest.Al [This message has been edited by aklap (edited 11-09-2003).] IP: Logged

kingfisherMember Posts: 468From: Northern CaliforniaRegistered: Jul 2000

posted 11-09-2003 11:40 PM

Thanks Becky and Al,I recognize a lot of those symptoms that JCC listed on the "strange neurological symptoms" thread--- like new floaters, hair loss, irregular heart beat,and frequent yeast infections. JCC seems to be referring to B12 deficiency though? No doubt I have a variety of deficiencies, but I haven't been able to correct anything because I havn't tolerated supplements.Al--- my fasciculations are actually almost gone. But I'm trying to put the whole puzzle together. They started about six years ago, and were very intense for the first year, and then very gradually got better. I had many visual disturbances then too, but I had very little of the burning or tingling. At the time, my doctor was pretty convinced I had MS--- but the MRI didn't show anything. I am really glad to hear that your fasics go away with a gluten-free diet. I don't remember anyone ever mentioning gluten sensitivity on the Neuromuscular forum, even though I spent lots of time there. Thanks, kingfisher

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paty91356Member Posts: 244From: Southern CaliforniaRegistered: Mar 2000

posted 11-10-2003 06:46 PM

Kingfisher...I was interested in reading that you have shortness of breath, and doc thought you had adult onset asthma, but asthma medication doesn't work...I have the same problem...I had asthma as a kid, and keep describing my breathing problem as "tightness" in breathing, and as I remember it feeling when I used to start with asthma when a child. He tried the inhaler on me, and it didn't do any good at all.Could you describe your symptoms more?I also have Idiopathic Peripheral Neuropathy and that is how I happened to stumble on this site...Thanks,Paty IP: Logged

jccMember Posts: 5281From: WIRegistered: Dec 2000

posted 11-10-2003 09:00 PM

Hi Kingfisher~ Yes, the symptoms I mentioned in my entry of the thread were related to my B12 deficiency, and they did all resolve on mega dose B12 and some other vitamins. Becky's were relative to her gluten intolerance (although she may have had an underlying B12 deficiency...who knows? malabsorption/nutritional deficiency is what celiac disease is all about.) Stacey has been dx'ed first with B12 deficiency, then with gluten/casein intolerance, then with Lyme disease. I had been dx'd with B12 deficiency, but my doc never exactly explained to me that it was the cause of all my neurological problems. I found my way to Rose in the PN forum, and through the help of many others...I finally uncovered gluten sensitivity was likely underlying my B12 and other nutritional deficiencies, and that my daughters neurological and GI problems were gluten related as well. It is possible for B12 deficiency to cause many of these symptoms, but gluten sensitivity alone can cause many of them...either through causing nutritional deficienies or through a more direct immunological attack. I do have one paper regarding celiac disease presenting with Nystagmus. I posted this information to someone as a long shot...and look what happened!http://neuro-mancer.mgh.harvard.edu/ubb/Forum1/HTML/003965.html Unfortunately this person never returned that I know of...which is too bad because I would love to know it the quick results were permanent ones. Yes, the elimination of gluten must be complete, and also the response time can vary from days to months (even years), and can take longest with neurological symptoms. I try not to advise people to skip diagnostic testing, but truth is that you don't need a prescription or doctors approval to make dietary changes or take vitamins. So many of us go around in circles for so many years that we sort of get tired of jumping through all the hoops, and paying the bill to boot. So, if you choose to forego the diagnostics I would concentrate on being sure you are strictly gluten free...and give it at least a six month trial...AT LEAST. Also, if you can't get tested for a B12 deficiency, I would recommended taking mega dose B12, and finding a multivitamin and B complex supplement you might be able to tolerate. Have you looked at Freeda Brand (no preservatives, dyes, etc) for multi's? What type of B12 have you tried? Shots are always another option there if you can't find an oral supplement. The fact that you have bad reactions to medications makes me wonder about Porphyria. I don't know much about it, but I do know there are medicines which can trigger attacks, and that it can cause PN and many other symptoms of nutritional deficiency. There is a Porphyria forum here at MGH, too. You should be able to find medications listed as ok or not ok for porphyria somewhere on the Porphyria forum. Maybe browsing the list will give you some clues. BTW..I definitely remember you from the PN forum, and I bet from BEFORE I knew it was gluten sensitivity haunting my family. I think it is pretty neat because my entire diagnostic journey is laid out in the forums at MGH. I would have never found these answers for my family without MGH, and I guess that is why I feel compelled to stick around and spread the info I've found through the help of so many here . You might also want to try eliminatin casein because it can also cause neurological problems in some people. Have you been tested for Lyme disease? You might want to visit the Lyme disease forum, because many people turn up positive to Lyme disease after years of negative tests. Just one more thing to consider...but give the gluten/casein thing a good effort first. How did your mother happen to try a gluten free diet? jcc

[This message has been edited by jcc (edited 11-12-2003).] euro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000345.html

[Guest guest]

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these are definitely my symptoms! However, I have been on the

gluten free diet pretty strictly for 2 months and haven't noticed a

big change. This seems to say you might need at least six months.

Maybe I haven't given it enough time? Hopefully that is the case.

Also, I have all the symtpoms of vit b12 deficiency but actually my

b12 level is high. I tested at 1000 and normal range is up to 878.

My doctor blew it off but when I was looking on the internet I found

one reference to iron deficiency anemia! Thanks for all your links.

Also, on the thyroid issue, I just had a free T3 it was 2.75(1.7-

3.7) and a free thyroxin. I was .9(.7-1.9). My doc thinks I am

ok. What do you think of my results? Do you think progesterone

supplementation will help my thyroid? I read that progesterone and

testosterone both raise cholesterol. Since I just started them, I

am concerned my cholesterol will get worse. However, my sister said

that cholesterol tests can be affected by what you ate the night

before. She said they had a patient that ate a bag of pecans the

nite before and tested at 700! Let me know what you think. And

thanks for the prayers! I appreciate it

love,kathy

> >

[Guest guest]

Kathy, wait it out on the diet and see how you feel. It may take about 6 months. Also, if you are having b12 issues, you may not be able to feel the full difference, as that can make you so tired and depressed! I know sometimes, when my levels were high, Mercola would say I wasn’t uptaking the mineral properly. Weird huh? The blood was showing an overload. He was usually right, and would back it up with a hair analysis. look into that b12 more.

Your t4 seems borderline low. Perhaps thyroid would improve on some progesterone , it did for mine as well as many others, (patty too) your levels don’t say you need thyroid treatment that much. Again, stick it out for 6 months too. I say, after what I have read, IMO- almost every women over 35 needs some supplementation, in this estrogenic environment! Even if small. We are loaded with them. Stick with it girl.

You are right, is you weren't fasting for your cholesterol, girl, it could have been so wrong! Take it again later and fasting, with only water. That's how it is supposed to be done. Don’t worry kathy, you are getting better, just remember to jump over the toads in the road to see all the yellow bricks laid out for you! Love your friend,

Re: twitching, short of breath, irritated bladder, etc - BrainTalk Communities - Neurology Support Groups

-these are definitely my symptoms! However, I have been on the gluten free diet pretty strictly for 2 months and haven't noticed a big change. This seems to say you might need at least six months. Maybe I haven't given it enough time? Hopefully that is the case. Also, I have all the symtpoms of vit b12 deficiency but actually my b12 level is high. I tested at 1000 and normal range is up to 878. My doctor blew it off but when I was looking on the internet I found one reference to iron deficiency anemia! Thanks for all your links.Also, on the thyroid issue, I just had a free T3 it was 2.75(1.7-3.7) and a free thyroxin. I was .9(.7-1.9). My doc thinks I am ok. What do you think of my results? Do you think progesterone supplementation will help my thyroid? I read that progesterone and testosterone both raise cholesterol. Since I just started them, I am concerned my cholesterol will get worse. However, my sister said that cholesterol tests can be affected by what you ate the night before. She said they had a patient that ate a bag of pecans the nite before and tested at 700! Let me know what you think. And thanks for the prayers! I appreciate itlove,kathy> >

[Guest guest]

Thanks julie for the encouragement and advice. Unfortunately, my

cholesterol was fasting. But my sister said even so, what you ate

the night before can impact you. I am not as upset as I was. I am

just going to tweak my diet and get tested again in the spring.

LWhat were your b12 levels? Two years ago mine was 1400. Almost

twice the norm. Do you think dr mercola is worth it for me to see?

I have already followed alot of his suggestions. He is probably 2.5-

3 hours away and probably alot of money that my husband's insurance

won't cover. Three years ago, i saw a Dr. Busse up in chi town that

a massage therapist recommended. I wanted to go to Dr. Mercola but

she discouraged me and said Busse instead. Well after just 3 visits

I owed almost $2000 and insurance didn't cover most of it. What did

he suggest for your high b12 levels--anything? Let me know what you

think. Thanks so much!

Hugs,kathy

> Kathy, wait it out on the diet and see how you feel. It may take

about 6 months. Also, if you are having b12 issues, you may not be

able to feel the full difference, as that can make you so tired and

depressed! I know sometimes, when my levels were high, Mercola would

say I wasn't uptaking the mineral properly. Weird huh? The blood was

showing an overload. He was usually right, and would back it up with

a hair analysis. look into that b12 more.

> Your t4 seems borderline low. Perhaps thyroid would improve on

some progesterone , it did for mine as well as many others, (patty

too) your levels don't say you need thyroid treatment that much.

Again, stick it out for 6 months too. I say, after what I have read,

IMO- almost every women over 35 needs some supplementation, in this

estrogenic environment! Even if small. We are loaded with them.

Stick with it girl.

> You are right, is you weren't fasting for your cholesterol, girl,

it could have been so wrong! Take it again later and fasting, with

only water. That's how it is supposed to be done. Don't worry kathy,

you are getting better, just remember to jump over the toads in the

road to see all the yellow bricks laid out for you! Love your

friend,

> Re: twitching, short of breath,

irritated bladder, etc - BrainTalk Communities - Neurology Support

Groups

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> -

>

>

> these are definitely my symptoms! However, I have been on the

> gluten free diet pretty strictly for 2 months and haven't

noticed a

> big change. This seems to say you might need at least six

months.

> Maybe I haven't given it enough time? Hopefully that is the

case.

> Also, I have all the symtpoms of vit b12 deficiency but actually

my

> b12 level is high. I tested at 1000 and normal range is up to

878.

> My doctor blew it off but when I was looking on the internet I

found

> one reference to iron deficiency anemia! Thanks for all your

links.

>

> Also, on the thyroid issue, I just had a free T3 it was 2.75(1.7-

> 3.7) and a free thyroxin. I was .9(.7-1.9). My doc thinks I am

> ok. What do you think of my results? Do you think progesterone

> supplementation will help my thyroid? I read that progesterone

and

> testosterone both raise cholesterol. Since I just started them,

I

> am concerned my cholesterol will get worse. However, my sister

said

> that cholesterol tests can be affected by what you ate the night

> before. She said they had a patient that ate a bag of pecans

the

> nite before and tested at 700! Let me know what you think. And

> thanks for the prayers! I appreciate it

> love,kathy

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