Aa
Not yet diagnosed but scared !
hi all, i just joined as i cant find an addecuate answer and was hoping you may give me some advice.I'm 26 yr old female, i had a pain in my left eye with slight blurrines 2 yrs ago, the pain lasted for one week then it went away. Then last year i got the same symptom and i went for a check up in eye hospital, they send me for an mri scan as they couldnt find what is causing it, I had an mri brain scan as well as a scan of my eyes. After that i received a letter from my doctor saying there was an evidence of demyelination due to inflamantation in the optic nerve. I called the doctor for explanation as obviously i didnt know what that means :) - he said my eyes are ok but i have demyalination on my brain. Im due to have an appointment with neurologist this month on 22d. I have read so many mind distructing things on internet about MS that i feel very much depressed and a day doesnt go without fearing the feuture.
I feel great at the same time, i dont have any numbness or other worrying symptoms, I signed up to go to the gym, I take vitamins and drink smoothies :), i go to a chiropractor who is doing adjustments for me and it makes me feel full of energy. He found out that i don get good supply of CSF to my brain and that this is the cause. Im not sure if they found any lesions on the brain as he couldnt explain this on the phone but my GP said they might start me on medications. My question is how will they know its ms for sure and the medications to put me on when i dont have anything so much severe to be treated.? Arent they suppose to make more tests ? I know neurologists dont approve Chiropractic care but theres many evidences even Montel Williams prooved that if you go to one your symptoms may disappear and even elevate the disease. Does any of you go to one and how do you feel? I feel very scared as i dont know what the future will bring- im sure you will say everyone of you felt the same, i dont think the disease is making me depress- butthe things i read on internet in regards of it makes me feel low! I dont want to start on meds just yet as they can be very damaging especially when i havent been diagnosed yet. What do you think guy? thanks in advance
I feel great at the same time, i dont have any numbness or other worrying symptoms, I signed up to go to the gym, I take vitamins and drink smoothies :), i go to a chiropractor who is doing adjustments for me and it makes me feel full of energy. He found out that i don get good supply of CSF to my brain and that this is the cause. Im not sure if they found any lesions on the brain as he couldnt explain this on the phone but my GP said they might start me on medications. My question is how will they know its ms for sure and the medications to put me on when i dont have anything so much severe to be treated.? Arent they suppose to make more tests ? I know neurologists dont approve Chiropractic care but theres many evidences even Montel Williams prooved that if you go to one your symptoms may disappear and even elevate the disease. Does any of you go to one and how do you feel? I feel very scared as i dont know what the future will bring- im sure you will say everyone of you felt the same, i dont think the disease is making me depress- butthe things i read on internet in regards of it makes me feel low! I dont want to start on meds just yet as they can be very damaging especially when i havent been diagnosed yet. What do you think guy? thanks in advance
I can't think of add anything to add to the excellent advice you've been given above. I completely agree with everything that's been said and just encourage you to do your best not to let your mind go to the worst case scenario, as that's something the vast majority with MS will never, ever experience. It is a diagnosis that certainly requires some adjustment, but it is nowhere near as bleak for most of us as it initially seems. Just take a deep breath and take things one step at a time.
Thank you ver much for replying ! What you are saying makes sence and you actually explained better than the doctors! Looks like they cant be bothered with patients.. England has a very good structured health system but the doctors most of the time are wuite neglecting and if you ask questions sometimes they give you limited information. As someone previously commented ... Dr. google is not a good alternative for answers ;))
COMMUNITY LEADER
Good morning (lol it is over my side of the planet)
You previously said...."I had an mri brain scan as well as a scan of my eyes. After that i received a letter from my doctor saying there was an evidence of demyelination due to inflamantation in the optic nerve. I called the doctor for explanation as obviously i didnt know what that means :) - he said my eyes are ok but i have demyalination on my brain."
It's actually a bit odd for your doctor to be telling you that your eye's are okay or healthy, when the letter you received was stating your MRI showed evidence of demyelination in the optic nerve. The health of at least one of your eyes, is not healthy or normal if you have evidence of optic nerve damage, demyelination in the optic nerve is usually Optic Neuritis (ON) in MS.
There seems to be some misunderstanding, visual issues are very common in MS but permanent and or total blindness would be a very 'rare' worst case scenario!
Unilateral optic nerve damage is the more common experience for pwMS who are diagnosed with ON, around 80% MSers at some stage are diagnosed with ON but approx 90% is unilateral. So whilst bilateral ON can still happen it's just not something that normally happen's and most patients with optic neuritis actually recover functional vision with minimal deficit within one year.
Theoretically for an MSer with ON to have total and permanent blindness, you'd first need to have bilateral ON (uncommon) and on top of that also have had multiple attacks of both the optic nerves (uncommon) and or sufficient level of damage for vision to be unrecoverable (rare) and all told if you really think about it, the odds of total and permanent blindness is not worth you even thinking about......
At this stage you really should try to keep open minded, you honestly may not develop or already have MS, keep breathing and try not to overly worry to much!
Cheers...........JJ
You previously said...."I had an mri brain scan as well as a scan of my eyes. After that i received a letter from my doctor saying there was an evidence of demyelination due to inflamantation in the optic nerve. I called the doctor for explanation as obviously i didnt know what that means :) - he said my eyes are ok but i have demyalination on my brain."
It's actually a bit odd for your doctor to be telling you that your eye's are okay or healthy, when the letter you received was stating your MRI showed evidence of demyelination in the optic nerve. The health of at least one of your eyes, is not healthy or normal if you have evidence of optic nerve damage, demyelination in the optic nerve is usually Optic Neuritis (ON) in MS.
There seems to be some misunderstanding, visual issues are very common in MS but permanent and or total blindness would be a very 'rare' worst case scenario!
Unilateral optic nerve damage is the more common experience for pwMS who are diagnosed with ON, around 80% MSers at some stage are diagnosed with ON but approx 90% is unilateral. So whilst bilateral ON can still happen it's just not something that normally happen's and most patients with optic neuritis actually recover functional vision with minimal deficit within one year.
Theoretically for an MSer with ON to have total and permanent blindness, you'd first need to have bilateral ON (uncommon) and on top of that also have had multiple attacks of both the optic nerves (uncommon) and or sufficient level of damage for vision to be unrecoverable (rare) and all told if you really think about it, the odds of total and permanent blindness is not worth you even thinking about......
At this stage you really should try to keep open minded, you honestly may not develop or already have MS, keep breathing and try not to overly worry to much!
Cheers...........JJ
One more thing.. I had mri for my eyes and it turned out they are healthy. But im worried if im diagnosed with ms for sure it can lead to total blindness is that true? As my optic nerve was inflamated before which was my symptom...
Tell me about world turning upside down! I feel as my life has ended i feel depressed and today i had a panic attack due to worryung so much.. I really need some reassurance ..i feel im different from other people and my life wont ever be the same as it was although i feel quite normal and trying to be positive but before i get a definite diagnosis i dont know what im going to do.you are saying it all depends on where i have the inflamation does that mean they will be able to predict how it will go...? Probably not as every person is different. I just hope it stays with the same symptom til the end...i know bening ms is rare byt ut happens and im secretly hoping it wont develop... Thanks for the responses
Sure you are scared to be diagnosed with MS and of the treatment. It is like other illnesses like diabetes you have to follow what the neurologist says.
There is nothing wrong with a chiropractor unless you use them instead of the medication to slow progression. MS progression can happen with or with out symptoms. MS lesions can go away in the beginning. I had it happen. You want to get on medication to keep optic neuritis at bay.
Every case of MS is different. Do not think you will get every symptom. It all depends on where you have inflammation or nerve damage.
Many people do really well on the medications. In the past before the medications MS was a very crippling disease. The drugs have side effects but you won't get all the side effects.
The diagnosis stage is one of the hardest. It is like your world is turned upside down. It gets better.
Alex
There is nothing wrong with a chiropractor unless you use them instead of the medication to slow progression. MS progression can happen with or with out symptoms. MS lesions can go away in the beginning. I had it happen. You want to get on medication to keep optic neuritis at bay.
Every case of MS is different. Do not think you will get every symptom. It all depends on where you have inflammation or nerve damage.
Many people do really well on the medications. In the past before the medications MS was a very crippling disease. The drugs have side effects but you won't get all the side effects.
The diagnosis stage is one of the hardest. It is like your world is turned upside down. It gets better.
Alex
COMMUNITY LEADER
Hi and welcome to our little MS community,
I totally 100% agree with ess!
I have some genuine concerns that you are possibly more vulnerable to shonkie practitioners at the moment, you are understandably frightened and you have some level of misinformation about a medical condition (MS), which you 'could be' diagnosed with at some stage......... please don't waste your money or your health on someone who makes these types of fraudulent claims, i'd highly recommend you get away from this chiropractors!
"Montel and Chiropractic Care
Montel Williams was quite vocal about the relief that he felt after his visit with Dr. Kerr. Before his visit he claimed that he was in pain “24 hours a day, seven days a week, 365 days a year.” And after his doctor referred him to a chiropractor, he insists that he walks differently, has reduced pain symptoms, and has regained strength in his leg. He believes that this is the result of Dr. Kerr helping his pelvis realign itself." http://chiropractorhouston-thejoint.com/katy-freeway/can-chiropractic-care-help-ms-patients/
Montel Williams unfortunately doesn't actually 'prove' anything in regards to MS, it is only an anecdotal story with no scientific study results to back up further claims in regards to MS. It is possible his pelvis was out of alignment and that was what was causing him considerable pain and weakness in his legs but structural issues are not primarily caused by MS though they sure would make dealing with MS a lot more difficult......
Try and remain open minded at this stage and if you can..........breath!
Hugs..........JJ
I totally 100% agree with ess!
I have some genuine concerns that you are possibly more vulnerable to shonkie practitioners at the moment, you are understandably frightened and you have some level of misinformation about a medical condition (MS), which you 'could be' diagnosed with at some stage......... please don't waste your money or your health on someone who makes these types of fraudulent claims, i'd highly recommend you get away from this chiropractors!
"Montel and Chiropractic Care
Montel Williams was quite vocal about the relief that he felt after his visit with Dr. Kerr. Before his visit he claimed that he was in pain “24 hours a day, seven days a week, 365 days a year.” And after his doctor referred him to a chiropractor, he insists that he walks differently, has reduced pain symptoms, and has regained strength in his leg. He believes that this is the result of Dr. Kerr helping his pelvis realign itself." http://chiropractorhouston-thejoint.com/katy-freeway/can-chiropractic-care-help-ms-patients/
Montel Williams unfortunately doesn't actually 'prove' anything in regards to MS, it is only an anecdotal story with no scientific study results to back up further claims in regards to MS. It is possible his pelvis was out of alignment and that was what was causing him considerable pain and weakness in his legs but structural issues are not primarily caused by MS though they sure would make dealing with MS a lot more difficult......
Try and remain open minded at this stage and if you can..........breath!
Hugs..........JJ
Thanks for your reply. I get really anxious when it comes to diagnosis etc. im VERY confused and scared of bad news. Im still not married. Or have children. I was thinking to do my driving test but now i think this will prevent me from driving so i kind of given up on doing the test, although its quite early to think if it will in the future. I try to stay positive but sometimes i cant. Im scared to think what will happen and i dont even have someone to look after me.. I live in UK but originally im Bulgarian. I go on Google to try find something that will make me find a hope and think positively. Every time i see someone on the street in a wheelchair i get anxious! I think it will be me sooner or later. I wanted to go university but gave up on this as well... I know urs bad but what can i do i feel so depressed i cant stop thinking about the consequences.
I don't know whether or not this is 'real testimony.' I don't even know who wrote it--maybe it was your chiropractor.
But testimonials are not science, they are anecdotes. One experience of one person, if it's even true, and it probably isn't.This is a perfect example of 'anyone putting anything on the web,' that I warned against above. Read up on the scientific method, which explains how new knowledge is obtained.
Ask your GP about this, and tell him what your chiropractor says. If you don't trust your GP, find another one. Just don't waste your time and money on this charlatan.
But testimonials are not science, they are anecdotes. One experience of one person, if it's even true, and it probably isn't.This is a perfect example of 'anyone putting anything on the web,' that I warned against above. Read up on the scientific method, which explains how new knowledge is obtained.
Ask your GP about this, and tell him what your chiropractor says. If you don't trust your GP, find another one. Just don't waste your time and money on this charlatan.
Hi 2904. Welcome. :)
OK, first things first. You need to stay away from Dr. Google. Really. Google will ALWAYS take you down the rabbit hole of scariest outcomes. I know it's hard to wait in limbo, but for your own peace of mind you must try not to worry. Yes, you need further tests, but focus on NOW, on right this minute. Be aware of how you feel right now because now is all any of us ever has. The future hasn't happened yet, you don't know what it will be, so worrying about it only distracts you from being here right NOW and allowing yourself to enjoy the moment and how good you feel.
After walking away from Dr. Google, you have to know that there are several things that can cause demyelination in the brain, MS being only one of them, and that determining the cause of that demyelination is not generally an easy task. The GP who ordered your MRI is doing exactly right in not trying to diagnose you (he is truly not qualified as a GP to do that in this case) and in sending you to a neurologist who IS qualified to diagnose problems of the nervous system. He or she will determine whether your case is MS, by ordering tests to rule out other things that can mimic MS, and by taking a detailed history of your symptoms. The test results plus the history is how the neurologist will determine what the problem is. Often times this process can take a while, but for some of us it can be quicker. No matter how quick it is though, it will likely feel like a long time to YOU, when you're sitting there with no answers. We ALL know that feeling, believe me.
Only after you have been definitely diagnosed with MS, or probable MS, will you be put on any of the medications used to slow the progress of the disease. These meds are NOT "very damaging", they are just medications with side effects. ALL medications have side effects, which most people never experience. The important thing to know about side effects, is if you have them and they are truly negatively impacting your life, you simply quit that medicine and try another. No one is going to force you to stay on a med you can't tolerate. This is how all meds work, not just the ones for MS.
You also need to understand, that MS is largely silent in its damage. How you feel is not linked to how much damage MS may be doing behind the scenes. This is why it is dangerous to assume that feeling good means you are not progressing. If it is MS, you ARE progressing, which is why the medications to slow that progression and the incremental damage which accumulates over time, are so important.
Another thing to know, is that MS is highly variable. There is no standard course of this disease. Montel Williams' experience has zero bearing on what the next person with MS will experience. People are often very wrong about why this or that symptom comes and gos. It is human nature to wrongly attribute causation of a symptom to another event that is close in time to that symptom. So someone gets a flu shot, and in a few days gets the flu. "The flu shot gave me the flu!". Well, no, the flu shot with killed virus can NOT give you the flu...you just got the flu because you were actually infected prior to getting the shot, or were exposed and infected before the shot could reach full protection level. So Montel Williams attributing the disappearance of a symptom to chiropractic care, is understandable, but wrong. The fact is he can't know, any more than any of us can.
Finally, chiropractors are far far less qualified than anyone with an MD after their name, to diagnose *anything*, let alone qualified to say whether or not you are getting a good a good flow of CSF to the brain or to say that this supposedly inadequate CSF flow is the cause of your eye problem or, ultimately, the cause of MS. NO one knows what causes MS, and beware of anyone who says they do. Understand, I'm not anti-chiropractor - I saw one for years myself for back and neck pain, and I feel it helped that pain for quite a few years. But my chiropractor never made wild claims to be able to treat more than pain caused by spinal misalignments, nor did I go to her for more than that. It's when they make pronouncements they have no business making, they are being less than ethical, IMO.
Please ask more questions any time. There are very knowledgable people here who are happy to share and hopefully give perspective to the worried. We've all been there.
Karen
* Added after reading Ess's stuff: Yes! Stay away from this chiropractor. They are NOT trained as doctors and if they make claims like he is making - that he can treat MS, they are taking you to the cleaners for their own gain.
OK, first things first. You need to stay away from Dr. Google. Really. Google will ALWAYS take you down the rabbit hole of scariest outcomes. I know it's hard to wait in limbo, but for your own peace of mind you must try not to worry. Yes, you need further tests, but focus on NOW, on right this minute. Be aware of how you feel right now because now is all any of us ever has. The future hasn't happened yet, you don't know what it will be, so worrying about it only distracts you from being here right NOW and allowing yourself to enjoy the moment and how good you feel.
After walking away from Dr. Google, you have to know that there are several things that can cause demyelination in the brain, MS being only one of them, and that determining the cause of that demyelination is not generally an easy task. The GP who ordered your MRI is doing exactly right in not trying to diagnose you (he is truly not qualified as a GP to do that in this case) and in sending you to a neurologist who IS qualified to diagnose problems of the nervous system. He or she will determine whether your case is MS, by ordering tests to rule out other things that can mimic MS, and by taking a detailed history of your symptoms. The test results plus the history is how the neurologist will determine what the problem is. Often times this process can take a while, but for some of us it can be quicker. No matter how quick it is though, it will likely feel like a long time to YOU, when you're sitting there with no answers. We ALL know that feeling, believe me.
Only after you have been definitely diagnosed with MS, or probable MS, will you be put on any of the medications used to slow the progress of the disease. These meds are NOT "very damaging", they are just medications with side effects. ALL medications have side effects, which most people never experience. The important thing to know about side effects, is if you have them and they are truly negatively impacting your life, you simply quit that medicine and try another. No one is going to force you to stay on a med you can't tolerate. This is how all meds work, not just the ones for MS.
You also need to understand, that MS is largely silent in its damage. How you feel is not linked to how much damage MS may be doing behind the scenes. This is why it is dangerous to assume that feeling good means you are not progressing. If it is MS, you ARE progressing, which is why the medications to slow that progression and the incremental damage which accumulates over time, are so important.
Another thing to know, is that MS is highly variable. There is no standard course of this disease. Montel Williams' experience has zero bearing on what the next person with MS will experience. People are often very wrong about why this or that symptom comes and gos. It is human nature to wrongly attribute causation of a symptom to another event that is close in time to that symptom. So someone gets a flu shot, and in a few days gets the flu. "The flu shot gave me the flu!". Well, no, the flu shot with killed virus can NOT give you the flu...you just got the flu because you were actually infected prior to getting the shot, or were exposed and infected before the shot could reach full protection level. So Montel Williams attributing the disappearance of a symptom to chiropractic care, is understandable, but wrong. The fact is he can't know, any more than any of us can.
Finally, chiropractors are far far less qualified than anyone with an MD after their name, to diagnose *anything*, let alone qualified to say whether or not you are getting a good a good flow of CSF to the brain or to say that this supposedly inadequate CSF flow is the cause of your eye problem or, ultimately, the cause of MS. NO one knows what causes MS, and beware of anyone who says they do. Understand, I'm not anti-chiropractor - I saw one for years myself for back and neck pain, and I feel it helped that pain for quite a few years. But my chiropractor never made wild claims to be able to treat more than pain caused by spinal misalignments, nor did I go to her for more than that. It's when they make pronouncements they have no business making, they are being less than ethical, IMO.
Please ask more questions any time. There are very knowledgable people here who are happy to share and hopefully give perspective to the worried. We've all been there.
Karen
* Added after reading Ess's stuff: Yes! Stay away from this chiropractor. They are NOT trained as doctors and if they make claims like he is making - that he can treat MS, they are taking you to the cleaners for their own gain.
Im not trying to argue here but please have a read through this ...
http://mywifehasms.blogspot.co.uk/2008/04/chiropractic-care-for-multiple.html?m=1
And tell me what you thing whether its real testemony or not ? Thanks i might give up on him...
http://mywifehasms.blogspot.co.uk/2008/04/chiropractic-care-for-multiple.html?m=1
And tell me what you thing whether its real testemony or not ? Thanks i might give up on him...
Beware of this man! He is not a medical doctor, let alone a neuro. He may have patients who've had lesions heal, because some lesions do heal, but it wasn't anything he did.
He is making dangerous claims, all the while taking your money. Chiropractors make adjustments to the spine--they don't treat the immune system. Contact the governing board or society of chiropractors in your area and ask if they treat MS, and if not, why not.
I'm sure no one on this forum would endorse seeing a chiropractor for MS.
ess
He is making dangerous claims, all the while taking your money. Chiropractors make adjustments to the spine--they don't treat the immune system. Contact the governing board or society of chiropractors in your area and ask if they treat MS, and if not, why not.
I'm sure no one on this forum would endorse seeing a chiropractor for MS.
ess
Hi and thanks for responding. Chiropractors treat the immune system and the nerve system to work better which makes sence as to stop the disease progressing. He never said ge will cure me byt said the afjustments can slow the progression and he has patients with ms when their lesions disappeared. I have read a out such cases as well through nedical reasearch etc. it makes sence that if your body is functioning better it can stop damaging itself. Also he specialise in ms as well and has over 25 yrs of experience . I called other chiropractors but they said they dont deal with ms patients. Before i start any frugs i want to be fully tested first and diagnosed as im not diagnosed just yet. My concern is whetger to continue with the chiropractor or not, he siad i need to get treatment for a year at least because it doesnt work quickly and it takes some time.it does cost me a lot of money and i just need some kind of reassurance as i dont know who to believe anymore. I was thinking to do a year course of treatment with him and then do mri and if everything is the same to stop seeing him as its not making any sence to continue- obviously he didnt influence anything. Thanks
Hi and welcome.
I want to reassure you about some things. The treatment drugs for MS are not damaging. Don't believe everything you see on the internet. Anyone can post anything on the web, and there's some crazy stuff out there. I urge you to read only good medical sites provided by well-regarded researchers, hospitals, and MS societies. There you will find accurate information.
I have nothing against chiropractors, but they absolutely cannot and do not treat MS. They're not trained for that. Only certified neurologists, and preferably ones who specialize in MS, have the knowledge needed for MS.
You have now had 2 bouts of optic neuritis, which is very common as the first symptom of MS. It's good that your vision has not been harmed, so let's hope things stay that way. Demyelination in your brain, which was seen from your MRI, means that some of the 'wiring' in your brain has lost its protective coating. Fortunately that doesn't always cause symptoms, but as the disease continues and there is more demyelination, the results can be very serious indeed, not to mention permanent.
You are female, you are the classic age for MS to start, and you have evidence from testing that has led experts to conclude you have MS. As you prepare to see the neurologist, make notes on what you don't understand, and write down your questions. Feel free to ask here about any aspect of MS. Read lots of posts here.
There are good books and other publications about MS written by knowledgeable people. I urge you to get a couple of these and read them before you see the neuro. But don't read anything by someone having something to sell. There are no products or diets that will make this disease go away, though a healthy diet and exercise are certainly a good idea.
I have been living with MS for a lot of years, and so have a great many others here. Some are more affected than others, no question about that, and no one would choose MS, of course. But few of us need wheelchairs, and most are able to live rather normal lives. There are far worse diseases.
Do talk to your neuro about treatment drugs. You want to be as informed as possible as you make that decision. Some people choose not to treat their disease, but most do. I'm one of the big majority who do, as I believe it will offer the best chance to avoid real disability.
ess
I want to reassure you about some things. The treatment drugs for MS are not damaging. Don't believe everything you see on the internet. Anyone can post anything on the web, and there's some crazy stuff out there. I urge you to read only good medical sites provided by well-regarded researchers, hospitals, and MS societies. There you will find accurate information.
I have nothing against chiropractors, but they absolutely cannot and do not treat MS. They're not trained for that. Only certified neurologists, and preferably ones who specialize in MS, have the knowledge needed for MS.
You have now had 2 bouts of optic neuritis, which is very common as the first symptom of MS. It's good that your vision has not been harmed, so let's hope things stay that way. Demyelination in your brain, which was seen from your MRI, means that some of the 'wiring' in your brain has lost its protective coating. Fortunately that doesn't always cause symptoms, but as the disease continues and there is more demyelination, the results can be very serious indeed, not to mention permanent.
You are female, you are the classic age for MS to start, and you have evidence from testing that has led experts to conclude you have MS. As you prepare to see the neurologist, make notes on what you don't understand, and write down your questions. Feel free to ask here about any aspect of MS. Read lots of posts here.
There are good books and other publications about MS written by knowledgeable people. I urge you to get a couple of these and read them before you see the neuro. But don't read anything by someone having something to sell. There are no products or diets that will make this disease go away, though a healthy diet and exercise are certainly a good idea.
I have been living with MS for a lot of years, and so have a great many others here. Some are more affected than others, no question about that, and no one would choose MS, of course. But few of us need wheelchairs, and most are able to live rather normal lives. There are far worse diseases.
Do talk to your neuro about treatment drugs. You want to be as informed as possible as you make that decision. Some people choose not to treat their disease, but most do. I'm one of the big majority who do, as I believe it will offer the best chance to avoid real disability.
ess
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