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Doctor Ordered Mri Of Brain
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What's the verdict ????? Hypothyroid for sure, or just maybe ???? blink.gif

Thanks for input----

Hypothyroid - that is my bet. Change Drs to a Dr that understands Hashimotos and tests Free T4 and Free T3 levels, and Thyroid Antibodies. Have you read much about Hashimotos Thyroid ? TSH testing is nearly useless is you have Hashimotos. So are the T4 if it isn't Free T4 and unbound etc. You need to understand that Hashimotos is an autoimmune attack on your thyroid by your body's own immune system...

http://www.stopthethyroidmadness.com/hashimotos/

WHAT IS HASHIMOTOS? Hashimoto

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Deb

Your post was a catalyst to make me do some more research for what I am doing. My background made me feel comfortable with this experiment. And I found a lot of support for it on medical sites and actual people using large amounts like I am sublingually.

My intention is not to take this much forever. No. A month to 6 weeks to see what it does for my neuropathy. If better, I will gradually reduce until I get to a dose that keeps me symptom free.

Here are just a few things I found:

Using Vitamin B12

(cobalamin, cyanocobalamin, hydroxocobalamin, methylcobalamin)

Recommended Daily Intake (Healthy Individual): 6 mcg.

Dosage (therapeutic): By injection: from 1000 mcg every few days up to 10,000 to 25,000 mcg/day. Oral (including sublingual) and nasal gel: probably 500-25,000 mcg/day. Sublingual and (especially) nasal gel products may rival B12 shots in their ability to increase blood levels. Studies like that of Mayer et al. suggest the cyanocobalamin form of B12 typically used in supplements isn't as clinically effective as methylcobalamin.

Cost: moderate.

Side effects, cautions, contraindications: Evidently none.

NO TOXICITY LEVEL for B-1 B-2, and B-12, The Sky is The Limit

There is no toxicity level known for B1, B2, and B12, and a few manufacturers make a separate B12 with 500 mcg, 1,000 mcg, 3,000 mcg, and even 5,000 mcg (take 1 to 3 times daily, stick under your tongue and let it dissolve underneath your tongue for more efficient absorption). I get at least a total of 5,000 mcg of B12 over a 24 hour period (used to take 20,000 per day for a while), and have notices that my musical abilities and coordination have greatly improved since I have been taking the larger dosages, as B-12 helps ones "Mental/Physical Coordination" (good for musicians and athletes). Many people take a separate B12, in addition to a "multi B" (As the amount of B12 in a B-100 is so small, typically only 100 mcg or 0.1 mg).

ZONE 1 - any dose of cyanob12 or hydroxyb12, oral or injected, daily, weekly or monthly,

a small amount of healing, needs tests to confirm, can correct blood abnormalities. There is no mention of dose proportionate healing in the literature.

ZONE 2 - Doses of methylb12 or methylb12 and adenosylb12, 120 mcg to 25,000 mcg oral or sublingual, 5mg appears to be sufficient for single sublingual dose, <=5mg injection. Dose proportionate healing, at least at relatively lower levels to 1500mcg/day is noted in the literature. Several sublingual doses per day are more effective than a single dose. Serum halflife starts out at about 20-50 minutes for unbound cobalamins. Widespread healing is a naked eye event. Probably adequate for 95% of healing outside the brain and spinal cord.

ZONE 3 - Sublingual doses above 60mg in 90 minutes. sc injections >= 7.5 mg.

This is the beginning of the zone of upregulation of neural healing in humans. The threshold is at around 7.5-15+mg sc injection. Hypothecized that this much is needed to cause diffusion transfer into cs fluid in the few minutes of highest concentration before clearing by kidneys 10mg methylb12 sc appears adequate and NOT proportionate over range 7.5-25mg as long as the threshold was reached. I use a 0.5cc 5/16 inch 31 gauge insulin syringe. Injections must be done daily. Symtoms start returning within 3 days. There is no "loading" effect contrary to common belief. The "loading" protocol might keep PA folks on the edge for years but it won't allow neural healing or toxin protection

My feet are regaining feeling in this zone after 15 years of increasing numbness not reversed by 3 years sublingual and 2 years 5mg injections daily. I'm not the only one reversing numbness.

ZONE 4 - Limited research evidence. Intrathecal methylcobalalmin appears very promising.

Zone two appears sufficient for most healing. Those with numbness and more severe neurological symtoms would likely benefit from higher dose methylb12 injections in addition to daily sublingual doses for Zone 3 healing.

__________________

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He also mentioned Hashimoto thyroid---- But I think he is focused on the possible MS before we chase any more rabbits-- : )

Some days, I feel almost normal energy-- some days I am dragging ------

However, the symptom of left facial numbness and tingling with distortion to my hearing in left ear sounds more like MS than hypothyroidism. I also have numbness and tingling everywhere that comes and goes, and feelings of weakness to an arm or leg that lasts for anywhere from 24 hr to 3 or 4 days. I have "vibrating" feelings at times. I have visual disturbances also. All symptoms come and go but each year, I am a little worse. Stress and overexertion make me much worse.

I want to have the brain MRI to rule out MS---- I have put it off long enough.

I responded above about the hypothyroid. I actually have some of the same symptoms as you've mentioned. They come and go, too. I also have partial deafness in both ears (since my early 20's - I'm now 45). I've had vibrating sensations for about 10 years now. And lately (since I started thyroid replacement), my legs feel heavy and weak. (I'm thinking I might need a higher dose of thyroid - but it could be something unrelated to thyroid, too.) Oh, stress and overexertion make me much worse, too. I can't take any stress at all.

As I've said, I do have Hashimoto's (and celiac). And, I'm really interested in hearing how your MRI goes, and your results. Could you let us know? Good luck with it.

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Ummm...is your doctor using the "old" TSH guidelines????? They were changed some 5 years ago.

http://thyroid.about.com/cs/testsforthyroid/a/labs2003.htm

You are clearly HYPOTHYROID.

And being hypothyroid can lead to all sorts of neurological conditions that mimic MS. ALL of those tests may be a BIG waste when all you need is proper thyroid medication.

I was HYPOTHYROID at 2.8 TSH. And I take Armour which will suppress TSH. I do not feel well unless my TSH is around .03.

The thyroid problem and anemia also tie in with Celiac and gluten sensitivity.

You will need to get your iron stores up so that you can utilize your thyroid medication properly. There is A LOT of fabulous info here:

www.stopthethyroidmadness.com

It is up to you if you want to go through with the MRI. But if it were me, I would print out the NEW TSH guidelines and take them to my doctor and ask to be treated. I mean demand to be treated. :angry:

Shay, I'm so glad you mentioned the thyroid. Mine too is over 3, but previous dr told me it was normal. I'm going to a new Dr in a couple weeks that is open to the new range so I'm hoping she will give me something. what brand of thyroid meds are you taking? I've heard Armour is good.

Thanks.

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Hi Shay,

I am very interested in B12 as my husband was diagnosed with a B12 deficiency about 10 years ago & has been doing injections of cyanocobolamin every 2 weeks or so ever since. He can tell when he needs it...it took about a year of his horrible headaches & dizziness to recede. About 4 years ago he developed psoriatic arthritis & we believe he is has either a serious gluten sensitivity or celiac (my husband's blood tests were negative, but he has so many symptoms & his nephew has severe celiac ). Have been on a gluten free diet for 10 months now.

ANYhow, what I really wanted to ask you was...

What does this excerpt from what you wrote mean?

There is no "loading" effect contrary to common belief. The "loading" protocol might keep PA folks on the edge for years but it won't allow neural healing or toxin protection

Are PA folks psoriatic arthritis folks?

What do you mean by "the edge"? Of health? And where did the tie to PA come in (if, in fact, you meant psoriatic arthritis)?

Thanks.

And thanks to all of you for creating this thread because my husband's brother (the father of the nephew with celiac) has been both diagnosed with MS & also, undiagnosed with MS because of spots on his brain which ended up disappearing once his severe neuropathy slowly dissolved. We are trying to convince him to both go gluten free & start taking B12.

Best~

RO

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http://www.medicinenet.com/pernicious_anemia/article.htm PA is pernicious anemia, a severe B12 deficiency. Not everyone with a B12 deficiency has PA. Here is another good site: http://www.yourhealthbase.com/vitamin_B12.html

Depending on which doctor you talk with, taking extra B12 may or may not be beneficial. My PCP says he feels taking B12 just gives you "rich" urine, but, he then says he has many patients who swear by the difference in their life from taking B12, so he says there may be something to it and he has no problems with me taking B12, or even asking for B12 shots. Doctors will tell you your B12 is fine as long as it falls within the "normal range" status. Yet, a person who has a level of 200 actually has a level that is too low. "Normal ranges" may be normal for one person, and way out of line for another.

I never had my level checked before I started taking B12, so now, I will never know what it was. I have not had B12 shots, so I am not sure what the type of B12 is for those. Taken orally, B12 should always be methycobalamin, our bodies can not process cynacobalamin nearly as well. I started out with 1000mcg and one year later, my level was at 1237, now I take 3000mcg and my level recently was 1013. I too can tell when my B12 is low, my neuropathy flares.

My neuro told me there is now a nasal spray B12 that works very well. He says the method I take B12 is up to me, no one method is better than another. He is a very highly respected neurologist, top in his field.

I hope some of this has helped you.

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RO,

I am not a medical doctor. I do have a Phd in Holistic Nutrition. But I acknowledge my limitations. I am a researcher by nature and I recommend that you do your own research with regard to anything I say. :)

But I interpret that quote to mean (for those with PA) that taking a massive amount of B12 early in treatment and then taking smaller amounts at periodic intervals will not heal the neuro symptoms. As your husband has discovered on his own. He has to take the shots on a consistent basis now for 10 years.

For those with moderate to severe neuro symptoms, "front loading" a massive amount of B12 and then taking a smaller amount once a month may not "heal" them. They need it consistently (like your husband).

Incidentally, I skipped my B12 for 2 days to see what would happen. Neuropathy got worse. I think I am building on a major deficit. So I am sticking with the original plan of 25000 or so a day (sublingually and transdermally) for 6 weeks. Will reassess then.

My Doctor works with me. She is a Holistic MD in Brandon FL. Not hard to find her online. She knows my education and background and allows me a lot of "experimentation" with her blessings. She, like me, recognizes that the human body is so very complex that not one person can know it all. She is open to learning from her patients. I love that about her. I could go tomorrow and ask for B12 shots, but I tend to be pretty self sufficient. Going to her only when absolutely necessary.

If my experiment works over the next 6 weeks, then it might just be more convenient for me to get her to Rx the shots so I can give them to myself at home every 2 weeks.

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thanks for the reply. And, yes, I agree...everyone should do their own research. I constantly do! But, I am so appreciative of all you who do as well & share your findings...whether they be articles or personal experiences.

Now I get it. My husband did "front load" at the very beginning. He took injections daily for a long period of time. Then went to the every 2 weeks. His doctor had told him that he should then go to once a month. But, when he did, his symptoms returned & he made the decision on his own to do the injections every 2 weeks.

This is all very interesting. When he was tested for B12, they almost missed it as his levels of B12 were in the low of normal range. But, his methylmelonic acid levels were sky high. That's what tipped his doctor off. Thank goodness!! Unfortunately, we were so elated that a solution to this was presented that we didn't even question WHY his levels were so off. Perhaps that would've led to a gluten discovery sooner....however, I guess that was 10 years ago & all the info I'm privy to now wouldn't have been available.

Does anyone have knowledge of injectable B12? I'm just wondering if perhaps cyanocobalamin is not the best injectable.

Thanks again!!!

RO

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Most people have reported greater improvement with: hydroxocobalamin injections

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If you don't mind me asking, how did the MRI go?

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If you don't mind me asking, how did the MRI go?

ditto

My Mississippi

I'm anxious to hear what they found also as i have bright objects from my MRI too

Judy

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Hi All,

Well, I was all ready and pscyhed up to go for the MRI and they called me early that morn to cancel it due to Tropical Storm Fay. :o

Of course this gave me more time to research brain MRI------ Bad idea ! :P and now I'm working up my courage to reschedule----- :D

I'll keep you posted----- :)

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"The majority of people who get an MRI show nothing. And keep in mind that MS is really a syndrome and MANY people who are dx MS later show no signs of the disease once they go on a gluten free diet and/or clear up their candida. Some also go into complete remisssion on the Swank diet."

Shay I have been dx with MS for 9 years now and have never heard it call a syndrome. As far as I know it is an autoimmune disease. While there in no cure for MS there is medication on the markert that will slow the progression. It hasn't been an easy ride for me I am on my forth medication hoping that this one with help. The MS has been real aggressive on my eyesight and I have just be dx with retintits pigmatosa (sp) so either way the out come for me could be blindness.

I started the gluten-free diet 1/08 after many years of stomach problems and docs not being able help me. My sister-in-law gave me the idea. It has helped my stomach bunches and I knwo in the long run it will help with my health in general.

My B12 lever was also checked in the beginning and at the point it was fine but withing the past year it has been low so I am now on B12 injections.

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Chrissy - Check out "The MS Recovery Diet" as I feel it condenses all of the information/research on a diet/MS connection . What is autoimmune disease? Why does the body attack itself in the first place? It doesnt make sense for the body to attack itself. There is always a trigger. My research indicates a dietary component to MS. Sometimes that diet leads to Candida overgrowth and the fungus is the trigger. Sometimes it is a specific food like gluten or casein.

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Shay it just so happens that the book is at the library so I have placed a hold on it. It makes sense to my that something had to trigger the MS and I am all for doing what I can the natural way to help my healing. I do kow that since I have been gluten free that I have lost 30lbs and my stomach for the most part has been doing better. I have been finding that I seem to be more sensative for certain fruits like apples and bananas whichs make my stomach burn, but they didn't before. The last time I ate an egg I want to barf please excuse my colorful language. I can eat things with egg in it like cake but not just a plain egg ick.

I would love to eat my fresh vegies and find fruits I can tolerate, maybe I will have to do can or frozen, I seem to handel berries ok. I am just having a hard time being disciplined in eating them or some days in eating at all.

Like you say the MS had to come from somewhere. Now if I can make you go back there haha.

Chrissy

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My Dr ( naturopath as well as normal Dr ) found she had a patient with MS that only started to improve after being totally gluten-free, and wearing a mask to feed her chickens. The chicken's feed had wheat and the dust was Glutening her. After wearing the mask for a while her numb patches improved.

I have four or five autoimmune diseases - all happening or coming out of remission - in the last few years. I blame the chicken pox vaccine I had in 2001. I did not know that people with autoimmune diseases should not have live vaccines....

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Chrissy - Check out "The MS Recovery Diet" as I feel it condenses all of the information/research on a diet/MS connection . What is autoimmune disease? Why does the body attack itself in the first place? It doesnt make sense for the body to attack itself. There is always a trigger. My research indicates a dietary component to MS. Sometimes that diet leads to Candida overgrowth and the fungus is the trigger. Sometimes it is a specific food like gluten or casein.

great post by kinda scary............ :ph34r:

in a nut shell.......if i read right....... your saying that according to this book the un dx celiac for like 20 years can lead to MS? I probably read it wrong and if so i'm sorry!

since i have the bright objects on brain MRI this is kinda scary but i know these have to be in special places in there. Probably should have re read the thread again before posting.

thanks again for the post!

Judy

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I didnt include the term Celiac in my description, nor does the book focus on it. Instead, the book focuses on the different dietary factors that can lead to MS. One of them is gluten. This diet excludes, gluten, dairy, eggs, yeast, legumes and limits animal fats. It is not an easy diet. But the book is a good read and well thought out and researched IMO. Another book I read focuses on Candida and a diet/regime to conquer it. This can lead to remission in many MS patients. It does not surprise me that dietary changes can help many illnesses.

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I didnt include the term Celiac in my description, nor does the book focus on it. Instead, the book focuses on the different dietary factors that can lead to MS. One of them is gluten. This diet excludes, gluten, dairy, eggs, yeast, legumes and limits animal fats. It is not an easy diet. But the book is a good read and well thought out and researched IMO. Another book I read focuses on Candida and a diet/regime to conquer it. This can lead to remission in many MS patients. It does not surprise me that dietary changes can help many illnesses.

It does not surprise me that dietary changes can help many illnesses either. I totally agree with you

I know you didn't include the term celiac. I guess after seeing so many posts here on 'what was your trigger' for celiac disease........i was wondering if gluten could be the 'trigger' for MS. 2 of my friends who have MS have found the foods you listed helped them after they deleted them for their diets.

Since there seem that the gluten ataxia issue also, guess they are totally different, I agree. Just got my brain wondering. The book does sound good. Not going to worry about the 'what if's' until i have too i guess. I'm doing all the right things i can for my eating health now, so will just let it be.

thanks again for the post and info.

Judy

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great post by kinda scary............ :ph34r:

in a nut shell.......if i read right....... your saying that according to this book the un dx celiac for like 20 years can lead to MS? I probably read it wrong and if so i'm sorry!

since i have the bright objects on brain MRI this is kinda scary but i know these have to be in special places in there. Probably should have re read the thread again before posting.

thanks again for the post!

Judy

Judy, When bright objects are found on an MRI and they are not in the correct location to be diagnostic of MS they are often diagnostic of celiac. If you google UBO's and celiac you should see some information come up although most of it is not from the US.

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Judy, When bright objects are found on an MRI and they are not in the correct location to be diagnostic of MS they are often diagnostic of celiac. If you google UBO's and celiac you should see some information come up although most of it is not from the US.

Thanks Ravenwood, I looked awhile ago but do it again. Appreciate your reminder! Think I learned about the 'places' they have to be in the brain from you actually :lol:

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This is all so amazing! it's like the puzzle pieces that have been missing my whole life (and those of a few very close family members & friends) are all coming together.

Soooooooo many Dr.'s with no answers!

I've had 2 MRI's one in about 2004 and one just a few months ago, with contrast injection, and the needle nerve testing later. Not exactly pleasant but not painful.

All showed nothing, yet I have numbness, tingling, loss of control of hands and arms, nerve twitching, and always always the headaches.

At my follow up apt I told my Neurologist I was just Dx with Celiac, "hmm interesting", he said nothing about the relation between celiac and neurological problems.

When I ask any of my Dr.'s about supplements the usually roll their eyes and say they are a waste of money....and MRI's are not apparently.

(although I do have peace of mind there is no Brain tumor that's a good feeling!)

2 have recommended Glucosamine, and fish oil...My GI said the folic acid is a good idea

I'm doing as much research about all this as I can (my brain will only absorb so much at a time)

I've started

B vitamins

Folic Acid - because I am on sulfasalazine for Colitis, which disrupts your body's absorption of F.A.

magnesium

calcium citrate w/ D

glucosamine chondroitin w/bosswellia

E

caprylic acid - seems like this REALLY works on yeasts

all must be introduced slowly...because I can barely get enough food in me but I think I'm on the right track.

Goodness!

So much information! :D

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My GI said the folic acid is a good idea

Please stop the folic acid, and get tested for B12! Folate supplements can mask a severe B12 deficiency, and the pins and needles as you describe are classic book for a severe B12 deficiency. The damage may be permanent if you delay treatment...

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Please stop the folic acid, and get tested for B12! Folate supplements can mask a severe B12 deficiency, and the pins and needles as you describe are classic book for a severe B12 deficiency. The damage may be permanent if you delay treatment...

ok thanks!

So far I don't think any of them have ordered vit/mineral deficiency tests when I brought up malnutrition with my GI he said "yes, yes, there are lots of things caused by the celiac but you are not eating gluten and they will get better"

I plan on going back to my general care Dr (an Internal Med Dr) after my apts with specialists are done and ask her to test for deficiencies and my thyroid.

Thanks for the input!

I am finding so much useful info here!

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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