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new symptoms - MS? Or what else?
hi,
I would like to ask someone - please - could these be MS symptoms - or what? It has been about a few weeks since I have been experiencing some new symptoms (which my doc sais "its nothing" .. ) .. I can feel quite strong "burning" pain/feeling now (skin?? muscles?? - I cant say; mainly in abdominal area and on the back side of my neck) + I have now more frekvent muscle jerks (fasciculations?) + muscle weakness + face & tongue tingling/paresthesias + at the same time I can feel my brain "works as in a kind of safe-mode" sometimes (I cant concentrate on more than 1 thing at a time, I keep forgeting things etc...) other my "old" symptoms have also slightly worsened since then (oscillating/moving vision field, dizziness, L´hermite sign, tinnitus etc.), but nothing came out of the blue, each symptom has been only slightly worsened day by day ... Could this be associated with MS - or what else if not MS? (For a long time I have had susp. for MS, but after the test did not show anything but 4 "o" bands in CSF, my doc changed his mind and now he sais "this has nothing to do with MS", but does not say what it is then ..) .. thanks alena (sorry for my English is not perfect) |
MS or advanced B12 deficiency are two possibilities
They are supposed to isuspect and investigate advanced B12 deficiency when symptoms resemble MS. But many do not do it at all, and most do not know how to do it right. Symptoms of B12 deficiency vary tremendously, so there is no typical presentation, but long undiagnosed deficiency often causes damage similar to MS. And symptoms can be severe before lesions show on an MRI.
See B12 threads on the vitamin deficiency forum here on this board. Do take this seriously. It is tragic to become disabled unnecessarily for lack of an expensive and safe vitamin in the appropriate dose. rose |
Possibility of Fibromyalgia?
Hello Alena,
I'm not a professional so this is just my personal sceanario. I have severe Fibromyalgia. It has progressed via severity of symptoms each year. Although it is said FMS is not progressive, I believe in progressiveness due to symptom severity growing and losing more abilities each year. I also thought I had MS as may people with FMS do. I would have bet on it. Then I had 2 brain scans and both were normal. Have you ever been checked for FMS? The diagnosis is one which is usually not one which some Drs. care to refer to. It took me so long before I was dx'd. Just a thought, but I experienced much of what you speak of. TTT |
(((((((((Alena))))))))))).
Let me just say that if you (or anyone else dx'ed with MS or fibro) have not yet had a head/neck MRI, you need to get one. Both fibro and MS (and many other conditions) have been dx'ed due to symptoms that result from the presence of Arnold-Chiari Malformation, the herniation of the cerebellar tonsils in the lower back of the brain. The herniation may be extremely small and seem insignificant, but even a 1-5 mm herniation (which is typically only seen by a well-trained radiologist or neurosurgeon) can bring on seriously debilitating symptoms for some patients. Good luck... LIZARD :) |
Alena,
I had many of the symptoms you mention when I was B12 deficient. Here are the symptoms I had, and they all resolved over time with oral doses of vitamin B12 (1000-2000mcg daily). http://jccglutenfree.googlepages.com...ciencysymptoms Cara |
hi all,
thanks for your care and responses, yes, I was considering all those silly symptoms could be somehow B12 def. connected - but - although I have thousands little different symptoms every day, the most troublesome for me is (besides the muscle weakness) the tinnitus (neverending sound that comes frome "somewhere above" my head) - and - vision problems: all I see is constantly moving back and forth, swinging /jerking /wiggling or whatever else - which makes me constantly even more dizzy than I am .. - which seems not to be typical for B12 defficiency, as my doc said - and when I had been checked for B12 deff. - the results came back ok; I have never been checked for FMS - as I have never had any pain (but the abdominal area "burning" feeling, which is quite new to me - and which I am not sure If I can call it "pain" .. ).. I have had "Evoked Potentials" test (normal) and MRI (brain, C spine) - both normal; only the spinal tap showed 4 "o" bands plus (as doc said) quite high levels of IgG and also some IgM elevation. My neurologist still keeps saying "I am healthy" :) Thank you all for your responses and info (I would not have ever believed B12 defficiency could cause so many problems ..) a. |
Quote:
There are a few of us who make a lot of noise about B12 deficiency because most people would never believe it could cause so many serious problems. When my doctor's office called to say my B12 was a little low and I should take high dose B12 (1000mcg daily), (after 3 years...8 doctors), I thought it was an insignificant finding, or worse yet, a cheap attempt at a placebo fix. My doctor never took the time to explain it was the cause of all of my symptoms!! That is when someone forwarded me to rose :). So, I actually had a doctor who flagged it (most will miss it if it falls within normal range)~ and I almost still missed the boat. Do you know the actual results of your B12 testing? People can begin having symptoms with normal levels. I had been having symptoms for 3-5 years before my low normal level 294 (150-1100) was found. I've always wondered what my level was when I started having symptoms. So... there are definitely other things to consider, but do not overlook this possibility..even if your doctor says your B12 was OK. Normal isn't always good enough...so be sure to check that actual test results. Vision problems including optic neuropathy, dimming, blurriness, nystagmus, can come with B12 deficiency. One more link... on B12 deficiency and neurologic symptoms: http://www.emedicine.com/neuro/topic439.htm Your symptoms could also be consistent with Celiac Disease, too, which can present with neurological symptoms, with or without GI symptoms. Lots more about that in The Gluten File linked below my name. If you have family history of autoimmune disease or GI symptoms..all the more reason to consider. Here are some other things "they say" should be considered when dealing with MS-like symptoms. Quote:
Cara |
You may need to reconsider
Quote:
Marilyn In general, people without herniation may not suffer symptoms associated with brainstem compression but, rather, with lack of CSF flow and raised ICP. These symptoms tend to mirror those of PTC and include some of the ones listed below. Headache (esp. if daily or at lower back of head) frontal headaches as well Painful tension in neck Fatigue Migraines Dizziness Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus Tingling / numbness in the extremeties General imbalance / clumsiness Memory loss Restricted movement Intolerance to bright light / difficulty adjusting to light change Vertigo from position change or sudden standing Difficulty walking on uneven ground / feeling ground under feet Poor / degraded motor skills Difficulty driving Difficulty negotiating steps Pressure / pain in the neck Pressure / pain behind the eyes (soreness in the eyeballs) Back pain Neck spasms Insomnia Ringing in ears (like the tone heard in a hearing test) Swaying Pain when changing position Tingling / crawling feeling on scalp Intolerance to loud / confusing sounds Decreased sensation to touch in extremeties Decreased sensitivity to temperature Pain & tension along ear / eye / jawline Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes Drooling Spontaneous vertigo Hand tremors Poor blood circulation / cold hands & feet Sinus / mucous problems Sleep apnea Decreased muscle tone Pressure in ears / ears feel stopped up Nausea Difficulty reading / focusing on text Depth perception problems Burning sensation in extremeties / shoulder blades Menstrual problems / severe cramping during period Fluid-like sound in ears (like water running) Loss of sexual interest / lack of sensation in pelvic area Pulling sensation while sitting / standing Intense itchiness w/profuse sweating Slurred speech Gag reflex problems / lack of gag reflex Pressure / tightness in chest Loss of bladder control Frequent urination Dehydration / excessive thirst Electric like burning sensations Unequal pupil size Loss of taste Popping / cracking sounds in neck or upper back when stretching Dizziness Loss of smell / problems with sense of smell Dry skin and lips Sudden / abrupt changes in blood pressure due to awkward position of head Hiccups associated with drinking carbonated beverages Skin problems Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints. |
Wow -
so many of those chiari sx on that list are so similar to sx I had back in 2003. But oddly mine were due to my RSI {repetitive strain injury} / TOS {thoracic outlet syndrome} and have mostly faded or resolved with good treatment & off work. here's my list from back then- PAIN & SYMPTOMS Hands Sharp cramping pains in back of hands- with use - like writing, holding small objects, picking up small things- pins, tweezers, toothbrush Clumsiness of fingers Fingers stiff sometimes Loss of strength Tightness in back of hands Sharp stabbing pain sometimes when reaching around or twisting wrists = pockets, zippers, buttons Occasional swelling and color changes esp. if arms elevated very long Cold weather increases discomfort Wrists Sharp burning pain in wrist joints after use- handled large engineering documents–9/30/03 - OK now Bracelet feeling - topside 2”- 3” from wrist, Left > Right Tightness/pulling in that area now when forearm gets tight Fine sharp pains lengthwise 2” from wrist, underside only- minimal now R wrist bone sticks up higher than L? Different shape ? Forearms Tightness and a deep ache on top side of forearm -elbow to wrist- Deep ache is gone – tightness comes and goes with use Mid forearm underside aches- minimal now Tingling/ tight/pulling/stinging sensations just under skin- with use Hypersensitivity sometimes on top side Left worse than Right -usually Elbows Spots of tenderness above and below joint after moderate lifting or use L > R - elbow puffy and slightly numb at the inner crease area – minimal now L > R - sensitivity to fabrics and light pressures – minimal now Ulnar nerve symptoms 11/03 – 2/04 –upper body therapy {neck/shoulders} resolved most sx Point of both elbows get sensitive and have a small sore spot sometimes --NEW -11/04 - mostly gone now 1/05 When arms are extended palm up- wrist planes and elbow planes don’t match ?? When R shoulder is very sore can’t rotate R arm fully to extend it forward –1/12/05 Shoulder- R & sometimes L Sharp pain and a pulling pain when reaching to the side up/out and to the back -less now but still sometimes after any moderate use Crunching noises sometimes- minimal now Stiff, sore and tight some mornings after sleeping on that side Neck Tight, strained, sore spots – usually have to stretch daily to keep loose Crunching noises - minimal now Sometimes feels like I’m wearing a tight necked shirt Sometimes feels like my collar bones are getting pulled upward into my throat At times it felt like I could hardly hold my head up Whooshing pulse sound was on right side of neck –summer/fall 03, now more on left side - positional / tightness combination? Bruitt? Upper Back & Upper Chest Tight, burning and achy spots in upper back when head has been in a forward or downward position for any moderate length of time- better now since off work but starts if I read a book for too long or do gardening Tight, strained, heavy feeling if arms are forward/elevated very long Sharp pains or dull aches at times under shoulder blades and in various muscles in upper back—after moderate use Armpits/Pecs get tight and strained feeling at times Misc. Vision changes {comes and goes}= Double/blurry, light sensitive, more floaters, very watery Dizziness / lightheaded problems mostly occurring in 8/03 – 2/04 Headaches at back of head same time frame- none now Memory fades same time frame Concentration problems- fluctuates with symptoms Stuffy ears and sinus- fluctuates with symptoms Weak voice – cracks and scratchy throat- fluctuates with symptoms Trouble swallowing - fluctuates with symptoms Over doing of activities causes trigger points or spasms in upper body Weakness, fatigue and heaviness of arms, shoulders and upper back when holding arms out or up- while driving I need to change arm/hand positions frequently Delayed pain after use Hypermobility is an issue also My self treatments Rest, Heat, Ice, Stretching, Hydration, Self massage Trigger point therapy, Acupressure, Relaxation/ Breathing Postural awareness & ergonomics Vitamins & mineral supplements Chiropractic care *********************************************** alena- Do your symptoms seem to be whole body? What muscles feel weak? nice to meet you. Jo [I can feel quite strong "burning" pain/feeling now (skin?? muscles?? - I cant say; mainly in abdominal area and on the back side of my neck)] this part makes me think about RSD a little bit. |
hi,
wow (as you, Jo55, said :)) too, I am always surprised when reading how the neuro "staff" can be tricky :) so many symptoms mimic so many various diseases .. thank you all, interesting .. Cara, I dont know actual results for my b12 testing; but my first symptoms (dizziness, sleepyness, tinnitus and leg weakness and slurred speach) appeared about 10 years ago; now it has been about 1 year when my symptoms have worsened much more (in fact many new symptoms have appeared - limping, walking like drunk due to ballance problems, memory problems, exaggeration of vision problems etc.. ) .. Jo: my symptoms come and go - and I can feel my pareshesias, muscle cramps, tingling etc. all over my body (not only in extremities, each day different ) + the muscle weakness I can feel mostly in my right hand and legs .. and - please (sorry, my English) - RSD stands for Reflex Sympathetic Dystrophy ?? Marilyn, I am sorry about your daughter´s experience .. thank you for the Chiari tip .. thank you all, take care, alena |
That long relapsing and remitting history
is not likely due to B12 deficiency.
However, the methylcobalamin form of B12 can be helpful even when B12 is not low. So, I would take it while continuing to explore. Best wishes, rose |
Wow...I can also relate a little bit to so many of the things being mentioned here. I agree that these mystery neurological complaints and symptoms can be caused by so many different things!
I had many hand/forearm complaints... I couldn't WRITE anymore without moving my entire arm with a pen stuck in 'frozen' position in my hand. I had sharp stabbing pains in the wrists and forearms especially thumb and first finger (among other places in my body), very stiff hands, aching painful forearms etc.. I dropped things out of nowhere all the time. Vitamin B6 deficiency can cause carpal tunnel type symptoms, too, and for me...I think that was it. When my B12 deficiency was uncovered, I went on an overal supplement plan, which included extra P5P B6, magnesium, fish oil, and also a multivitamin. I had so many symptoms, too, just like the rest of you, that could "fit" with a number of conditions.....like fibromyagia, lyme disease, thyroid disease, etc. The only symptoms I have left are periods of brainfog and some lingering memory and concentration problems (still could not ever remember a number from a glance in the phone book to dialing it), but they are not nearly as bad as they were...still very frustrating at times. I also have very occasional and mild buzzing and twitching. When I was at my worst, I could not, for example, add two two digit numbers together; it was mentally exhausting just to read; I couldn't process verbal conversations around me at all (just heard blah, blah, blah); I couldn't articulate well, stuttered and often dropped off mid sentence with no recollection of what I was talking about; word finding problems..wrong words popping out all the time (this still happens but not every other sentence..maybe just a couple times a day); and a couple of times I even got lost/disoriented when driving when I was going to what should be a familiar place....and that is getting into scary cognitive problems. I had the couple of vertigo attacks (lasting days each time), also episodes of feeling like I was dropping from the sky, etc, all that stuff. Just from a vitamin deficiency. My early symptoms were on and off over the course of 3-5 years more like flares (like the urninary tract symtpoms...had several 'flares' of that over a couple of years). My ear ringing, buzzing, and clicking noises was definitely on and off over many years, but the "phantom" ear pressure and pain came near the end. I say "phantom", because on exam there was no fluid or infection. But, then, everything started worsening rapidly, with new symptoms piling on at more rapid pace during the last six months before my problme was finally uncovered. My oldest daughter, who we now know was B6 deficient, had "morning hands" during her childhood, and especially in the morning (hence us calling it 'morning hands'), couldn't button, tie shoes, dropped things, etc. My youngest daughter had a fleeting episode of slurred speech once just before we discovered her gluten sensitivity, but had more episodes of sporadic weakness (limp body fatigue), leg drag, staggering, droopy eyelids (she couldn't lift them open on occasion, usually in the morning shortly after arising, but it would happen, say, while eating breakfast...and last a couple of minutes) and a lazy eye. All as a result of gluten sensitivity~ all resolved on a gluten free diet. She does not have Celiac Disease. If you haven't had a chance to check out The Gluten File yet, I hope you will. Especially the pages on neurological manifestations of gluten sensitivity/gluten ataxia, and the diagnostic pages. Alena, just keep on looking~ and I hope you will find some answers one day soon. It can be a big long process of elimination and continued testing, and very hard to keep on going to the next doctor, next doctor, next doctor. Take breaks from it when you need to, but you may need to be very persistent to find answers. I agree with rose who suggests you take B12 and supporting vitamins (multivitamin, B-complex) while you continue to search... and of course always keep in touch with your doctor and keep him informed of things you are taking, including supplements ;). Lots of information on safety/dosing on roses' pages or mine. Do you have any family history of autoimmune disease? Good luck! Cara |
Alena, I know I'm late posting to this thread but I just joined and started reading.
MS is a difficult diagnosis for a number of reasons. There are so many things that need to be quantified including previous history. My question to you is this...have you been examined by an optomologist for signs of Optic Neuritis? I had a friend who had some vision problems, only occasionally, but enough for him to make an appointment and that's how his MS was found. Just a thought....I wish you much luck! |
agreement about B12 : )
Hi Alena,
I agree with the many here who have spoken of B12 and how it helps. I found this article yesterday about a doctor in England who prescribes it more than most... and was getting into trouble with the establishment, until 900+ of his patients stepped forward to talk about how much they'd improved. I put the article on my site because when I just use links, the links often "die" after months or years. http://health-boundaries-bite.com/Co...MPRESSIVE.html |
Alena Possible MS
Those were the exact symptoms I had several years ago and I had testing finally done by IGeneX Lab. It was from a tick the disease is called Babesia, I also have Lyme Disease. Took many doctors and surgeries and finally a good Lyme Literate MD and the tests confirmed my Diagnosis. Please e-mail me at pam482@hotmail.com if you want to correspond. tangye5
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I didn't realize Alena posted on Neurotalk, I've seen her archived posts in BrainTalk. I have the SAME exact visual problems and the only thing I have is Myasthenia Gravis. This isn't the typical eye lid drouble or double vision, but just as exactly as you describe. This all started in April for me. My doc thinks it's the Myasthenia causing it after ruling out MS and a bunch of other things. If anyone has anything to add, please let me know. i've been tested for Lyme twice, negative both times. I go to the Mayo in a couple of weeks to speak to the neuro muscular specialist.
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Im going to keep bumping this thread because its important to me that the valuable information alena has provided along with my same issue it will hopefully help someone else one day. Since i started with the exact visual issues as alena i have additional symptoms that have appeared. Alena was very creative that she created a visual simulation of what she was seeing that was grabbed by the migraine aura foundation based out of Germany. Her posts alone have given me hope abd confirmation this was not psychosomatic. Her gif is called autokinesis. Anyways, since i started ive noticed coordination problems, more noticeably in my dominant hand of course. I have to try harder to coordinate writing and other movements. Proprioception has become an issue as my heels feel like they lose sense of the ground, almost like vertigo, but more sensational. Alena complained of this as well. Mris have been normal (including dye and of spine )as well and spinal tap, eeg, lyme testing, blood work, and paraneoplastic blood tests. Ive done nothing since April because it gets tiring and discouraging. Anyways, i suspect ataxia, perhaps recessive condition rather than ms or mg. Ms is much more common than rare genetic. ataxic disorders although ataxia is a symptom. I am having another mri soon with not much optimism. I also had extensive balance testing at the university of miami that indicated a failed caloric response and possible convergence disorder. Dont give up if youre an individual that comes across this one day. I hope i can find an answer to help others because ive seen others posting on other sites. They are not recent though. I do ask that if you're an individual that reads this and feels i dont belong writng on this forum to kindly move on to another thread. When i first posted on the ms forum i was asked by a nurse with mg to not post there because i could be upsetting other members. You dont know what me and this young lady are going through and im truly just hoping this is helpful one day. I wish everyone the best and i will folliw up in time. The benefit of alenas posts gave me atleast a timeline of her progress. Happy holidays.
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Im going to keep bumping this thread because its important to me that the valuable information alena has provided along with my same issue it will hopefully help someone else one day. Since i started with the exact visual issues as alena i have additional symptoms that have appeared. Alena was very creative that she created a visual simulation of what she was seeing that was grabbed by the migraine aura foundation based out of Germany. Her posts alone have given me hope abd confirmation this was not psychosomatic. Her gif is called autokinesis. Anyways, since i started ive noticed coordination problems, more noticeably in my dominant hand of course. I have to try harder to coordinate writing and other movements. Proprioception has become an issue as my heels feel like they lose sense of the ground, almost like vertigo, but more sensational. Alena complained of this as well. Mris have been normal (including dye and of spine )as well and spinal tap, eeg, lyme testing, blood work, and paraneoplastic blood tests. Ive done nothing since April because it gets tiring and discouraging. Anyways, i suspect ataxia, perhaps recessive condition rather than ms or mg. Ms is much more common than rare genetic. ataxic disorders although ataxia is a symptom. I am having another mri soon with not much optimism. I also had extensive balance testing at the university of miami that indicated a failed caloric response and possible convergence disorder. Dont give up if youre an individual that comes across this one day. I hope i can find an answer to help others because ive seen others posting on other sites. They are not recent though. I do ask that if you're an individual that reads this and feels i dont belong writng on this forum to kindly move on to another thread. When i first posted on the ms forum i was asked by a nurse with mg to not post there because i could be upsetting other members. You dont know what me and this young lady are going through and im truly just hoping this is helpful one day. I wish everyone the best and i will folliw up in time. The benefit of alenas posts gave me atleast a timeline of her progress. Happy holidays.
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I apologize for the duplicate its difficult posting from a phone. I would like to add my doctor is not ruling out ms but my vision issues to me don't align. I don't have optic neuritis or constant nystagmus along with negative mris. Its all been disheartening though because at 28 i wish i felt normal and my vision was better. Its a struggle to perform everyday activities especially working on a computer buf im still working full time and masking my problems as much as possible. I took out a 20 year life insurance policy a year and half ago before im diagnosed with anything to protect my wife financially s and a full term policy as well. I am protected by the medical leave of absence and have short term and long term disability through work in conjunction with their life insurance. Ive done everything i can in the past 2 years to put things in order. 2015 is my year to hopefully get an answer because i am losing my EPO whichcovers everything 100 percent that is in network to a PPO in 2016.
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Hello Elena!
It most certainly could be, but when you mention about the tongue and the vision, sounds a lot like a migraine as well. You can 'apparently' get these symptoms without the actual migraine. Lots of things can be a cause of this. Goodluck with everything, keep on them to do follow ups of the MS, because you are right, they are spot on symptoms <3
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I'm following up as promised. Still no diagnosis lol. It's not funny, but honestly, what else can I do? I went through so much the past couple of years. I'm having balance issues now which I originally thought was leg weakness. I'm getting a slipping/sliding sensation in my feet, indicating a prioproception (spelling may be wrong) disorder. MRI (now my 8th I think) still negative. I did not get contrast with my last one because I'm becoming allergic and it's intense. Blood work a few days ago indicated a slightly high MCH level. I did not see b12 on there which I was surprised because I requested that from my physician. Soooo, I'm left in the dark. I've started B12 supplements and exercise has decreased the past several months due to fatigue and other factors. I'm a little scared at times, I'm not even 30. Being scared doesn't really benefit anyone so I don't talk about it or show it. Anyways, in the past I was told this was anxiety by peers or physicians and for the record my balance testing at the University of Miami was normal but showed some issues, specifically with my eyes and tracking. I think Alena's visual issues are abnormal saccades. Dropping sensation, prioperception disorder. Feeling drunk sensation, could be sensory ataxia or cerebellar maybe. The cognitive issues, which I occasionally experience but hide to the best of my ability by writing things down and using my phone as a resource, can be due to overload of the senses. If you think about it, if your brain is trying to process so much, vision, balance, sense of touch, etc. and there's a disorder or disconnect, it bogs you down. I wish I had an answer to provide. I was hoping by now I would be able to help someone else out. I have a low positive titer for Myasthenia Gravis, but this condition does not cause sensory issues like I experience. I have the following:
Numbness Coordination problems (walking easily, but not extremely noticeable, putting a car key in the door is difficult) Muscle weakness (Could be MG, who knows, treatment doesn't improve symptoms too much) tongue, legs, arms, fingers, hands, neck Vision issues describes EXACTLY like Alena. Insanely accurate, but it gave me hope that it wasn't psychosomatic lol. Minor Cognitivie Issues Depression/Anxiety (which I think any normal person would have some of due to the circumstances) I'm still plugging away. I don't know my next step. I've thought of alternative medicine, even B12 shots but they're on back order at this local wellness center, my physician won't approve unless I'm low. I easily saw over 20 physicians and had probably close to 100 tests between labs and other diagnostics. There's an issue, but it's not extreme enough for them to notice. It's crazy, because I'm not the same person. I do not dwell on this, but what does bother me is that if there is a simple fix such as diet or vitamins, I don't want to miss out. On the flip side, if it has taken this long to figure out, what are the chances they could even treat it? I've been more nervous lately about my walking, I'm scared of losing my independence to a wheel chair. I don't know. I'll keep you guys posted if anything new happens. I just wanted to reply as a courtesy. Eddie |
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