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HEADACHES AND MS
CAN YOU PLEASE TELL ME IF HEADACHES ARE A SYMPTOM OR SIDE AFFECT OF MS.I HAVE BEEN HAVING HEADACHES SINCE SEPT WHICH IS RARE FOR ME, I HAVE NOT FOUND ANY MEDICATION PRESCRIBED OR OVER THE COUNTER THAT TAKES THE PAIN AWAY ,ALONG WITH THE HEADACHES I AM HAVING TINGLING IN ARMS ANG LEGS NEARLY EVERYDAY AND MORE NOTICABLE AT NIGHT, HAVE PAIN ALONG MY SHIN BONES TOO.ALSO PAIN AND STIFFNESS BELOW MY NECK RIGHT WHERE YOUR NECK ENDS AND THE BACK STARTS.THE PAIN IN MY LEGS DOES NOT GO AWAY WITH ANY PAIN KILLERS. I HAVE READ THAT PAIN THAT IS FROM MS DOES NOT RESPOND TO ANY PAIN MEDICATION. ALSO COULD YOU PLEASE TELL ME WHERE IN ONES BRAIN WOULD MS SPOTS OR LEISIONS SHOW UP, IS IT MORE COMMON IN A CERTAIN AREA? AND HOW ABOUT HOW LONG AFTER A PERSON FIRST EXPERIENCES SYMPTOMS RELATED TO MS MIGHT IT SHOW UP ON AN MRI? I HAD 2 NORMAL MRI AND A THIRD ONE STATING A FEW SMALL PUNCTATE T_2 BRIGHT SIGNAL FOCI IN THE SUBCORTAL WHITE MATTER MATTER BILATTERALY WHICH ARE NON SPECIFIC AND NOT DEFINITELY PATHOLOGIC. I REALLY WISH THAT THOSE KINDS OF THINGS COULD BE WORDED SO THAT PEOPLE WITH OUT A MEDICAL EDUCATION COULD UNDERSTAND THEM WITH OUT CONFUSSING THEMSELVES. I ALSO OCCASIONALLY EXPERIENSE BOUTS OF VAGINAL NUMBNESS AND THE ONLY DISEASE THAT I HAVE THAT LISTED AS A SYMPTOM IS MS, AT THIS TIME IN MY LIKE I AM READY TO FIND OUT JUST WHAT IS HAPPENING TO ME BECAUS EI SPEND SO MUCH VALUABLE TIME SEARCHING THE NET FOR ANSWERS WHEN I COULD BE DOING MORE CONSTRUCTIVE THINGS. OVERALL I AM VERY GRATEFULL FOR THIS SERVICE THAT IS BEING OFFERED HERE AS ITS IS VERY HELPFULL.
Headaches, tingling, and vaginal numbness are not specific symptoms for MS, and do not particularly suggest MS.
MS is diagnosed primarily by discrete episodes of neurological dysfunction such as loss of vision of one eye, clumsiness or weakness of one side of the body, inability to walk or pass urine, double vision. Rarely there can be loss of sensation in a focal distribution ie on one side of the body. These episodes last for days to weeks then resolve, then return at a point later in time. This is the type of clinical pattern when doctors look for typical MS. With 3 normal MRIs the diagnosis of MS is unlikely, although a cervical spine MRI is also important to show MS, and may be indicated in the evaluation of your neck pain anyway.
T2 bright signal spots are quite common in the general population, especailly as we get older. Most commonly they are due to hardening of the arteries, or migraine.
The only type of pain 'specific' for MS is bilateral trigeminal neuralgia. This results in sharp shooting pain in both sides of the face. In a young person, this sign can suggest the diagnosis of MS.
Problems in the neck are quite common causes of headache. Perhaps a detiailed evaluation of your neck might reveal somethings that can be treated apart from pain medications. If there is an underlying cause of the pain, symptomatic treatment with painkillers may not be effective alone. If no definite cause is found, perhaps detailed pain management assessment coud help. For instance, this type of service is provided at the Cleveland Clinic Pain Management Center.
MS is diagnosed primarily by discrete episodes of neurological dysfunction such as loss of vision of one eye, clumsiness or weakness of one side of the body, inability to walk or pass urine, double vision. Rarely there can be loss of sensation in a focal distribution ie on one side of the body. These episodes last for days to weeks then resolve, then return at a point later in time. This is the type of clinical pattern when doctors look for typical MS. With 3 normal MRIs the diagnosis of MS is unlikely, although a cervical spine MRI is also important to show MS, and may be indicated in the evaluation of your neck pain anyway.
T2 bright signal spots are quite common in the general population, especailly as we get older. Most commonly they are due to hardening of the arteries, or migraine.
The only type of pain 'specific' for MS is bilateral trigeminal neuralgia. This results in sharp shooting pain in both sides of the face. In a young person, this sign can suggest the diagnosis of MS.
Problems in the neck are quite common causes of headache. Perhaps a detiailed evaluation of your neck might reveal somethings that can be treated apart from pain medications. If there is an underlying cause of the pain, symptomatic treatment with painkillers may not be effective alone. If no definite cause is found, perhaps detailed pain management assessment coud help. For instance, this type of service is provided at the Cleveland Clinic Pain Management Center.
please describe your headache better. is it 24/7, worse in the morning, worse later in the day, dull and aching, throbbing and worse with exercise, is there nausea, sensitivity to light, is there muscle tension in your forehead, does your nose feel blocked all the time, any neck pain, what blood tests have you had so far? there are a million variables in headaches, please be specific
my headaches started in sept and the first one lasted for several weeks without going away with any pain medication, it was like a weird pressure in and all over my whole head.I finally had a ct scan with contrast taht was normal and had blood work for everything you can think of, everything was normal.i do not have any sinus presssure or nose problems, occasionally the lower part of my neck bothers me. the tingling i have had off and on for a long time, it comes and goes so usually i have learned to ignore it , it wasnt untill the headaches came that it started to get worse. i simply have a bad feeling that i have ms, i am seeing another neurop this week.
`The tingling came before the headaches, i have had it many years , it comes and goes but this time it was worse and lasted longer.how does one know if it is a relapse or not? that confuses me as i have had a host of symptoms that come and go for apx 12 yrs now, so would that mean i am having a relapse? the mri said it was only a very few spots and did not call them lesions and didnt offer anything else in the way of a possibility, said it was most likely from my headaches, but since i have a history of other things i still think its ms, just cant get it out of my mind.i do appreciate all of your responses, they honestly do help and it is so nice of you to take the time to try and help people like me!
my headaches , i feel like someone cracked me over the head with a bat!!!!in sept when they started it was just alot of pressure but now they are worse and different, i really feel like my skull is cracking, no i do not have any nausea, lights do not bother me, i do not have any pressure or pain in my face or forehead and is not worse with exercise, it gradually comes on and then will last all day, i have found no pill to help. i have been tested for lupus, lyme, arthritis,and just about everythingb else in the way of bloo. you name it i was probably tested for it. all tests were negative.
Hi, Can you please post back and tell us what the new neuro says?. I would be most interested to know as I have been experiencing very similar symoptoms myself - some variations and extras, but everything you have said, I have had. Its all calmed down alot now, except for constant tingling toes, visual problems, occasional tingling/weak calf muscle, dizzyness and headaches. My neuro said he thought it could be complicated migrains. I had a hard time beleiving this - I had been so sure it would be MS as everything seemed to fit (I too had vaginal numbness) but the MRI (without contrast) was normal, and so the neuro said it was very unlikely. I researched the migraine possibility, and yeah - they can be pretty horendous in a small preportion of sufferers, but I have a hard time imagining that they would cause constant tingling toes that never change!
The other possibility for you of course, is Lyme - if I don't say it, somebody else is sure to on this site. Yes, I know you've been tested, but apparently the tests can return false negatives....Anyway, good luck and I hope you find an answer soon - I know what you mean about spending too much time doing this - I've managed to cut it down to twice a week - I'm very proud of myself!
The other possibility for you of course, is Lyme - if I don't say it, somebody else is sure to on this site. Yes, I know you've been tested, but apparently the tests can return false negatives....Anyway, good luck and I hope you find an answer soon - I know what you mean about spending too much time doing this - I've managed to cut it down to twice a week - I'm very proud of myself!
what did your dtr say about the vaginal numbness??mine told me to ligfht some candles!!! for crying out loud its not that i am not in the mood I just cant feel anything!!!I see a neuro tomorrow and am frightened to death, my apt is at 10;45. if I am not screaming with fear I will write back here tomorrow and say what he thinks.
You guys sound just like me , headaches mine are usually behind my eye, tingling arms shins some vaginal numbness , weakness, .I could add insomnia, night sewats ?? menopause. My lastest MRI with constrast of head and spine showed 2 non specific lesions. This same thing happened to me 13 years ago, it slowly went away.After a spinal tap , no oligbands or protein my Dr. ruled out MS. I am being treated for seronegative lyme ? fibromyalgia ? chronic Fatigue. I sometimes still worry it could be MS. Ihave been on doxycyline x 2 months and have slowly been feeling better and better. All my lyme tests including spinal tap were negative. I live in a wooded endemic area and have pulled ticks off.
just what does non specific mean? and where were they located??Im so scared I cant stand this anylonger, I feel like tomorrow my life will be over when I see my new neuro! how will I cope?
how bad does the spinal hurt??
You will cope sweetie- because you'll have to. You've obviously been through quite a bit of this before and you're still going. If you have'nt already been to your appntmnt before you read this, you need to understand that you will get no real answers this time - maybe some suggestions, but no neuro is going to diagnose you in one session - this is just the beginning of another journey and its going to take some time before you have piece of mind handed to you. So you have a choice - you can wait till then for it, or you could decide to create it for yourself.
The most helpful thing the woman at the MS society said to me was "you need to prepare yourself for the likelihood of it taking at least a year to have a deffinate diagnosis". How was that helpful?. Well - standing before her was a cot-case - terrified to death of the coming MRI and subsequent physicians appointment. That physicion had told me I had definate signs of nerve damage in my brain and eyes - I then had to wait for 4 weeks for the so-called urgent MRI, and then a further 10 days to hear the results. All I could think about was the future and if I would have one. But that lady's words pulled me out of that spin. I thought 'am I going to spend the next year feeling like this? - with my life on hold and the people around me suffering for it?' All I had thought about was the coming appointment and what the scan would say - as the phys was obviously confident of the results - but doctors can be wrong..... Its now been 6 months since then - I only got to see the neuro 6 weeks ago. That was a long wait, but I was OK, because I was getting on with my life - to the best of my abillities and it feels so good. I can't work as much as I could before, but I will never take it for granted again. I love my work and I feel so lucky to be able to do it TODAY - even if its for 1 hour - never mind tomorrow, I'll cross that bridge when I come to it. Lifes too precious to worry so much sweetie. Do everything you can, while you can and enjoy it. If its MS, its MS and you will go on. And life does'nt have to be hell - it can still be great - It'll just look a bit different from what you planned.
Oh yeah - neuro said nothing about numb vagina because it was all part of the bigger picture I guess and as I don't have a partner (I'm a single mum) it was the least of my worries.
All the best to you sweetie - I really hope you take this message in the way it was meant - know what you're going through and how hard it is - just wanted you to know that its possible to feel better without depending on a diagnosis.
Good luck
The most helpful thing the woman at the MS society said to me was "you need to prepare yourself for the likelihood of it taking at least a year to have a deffinate diagnosis". How was that helpful?. Well - standing before her was a cot-case - terrified to death of the coming MRI and subsequent physicians appointment. That physicion had told me I had definate signs of nerve damage in my brain and eyes - I then had to wait for 4 weeks for the so-called urgent MRI, and then a further 10 days to hear the results. All I could think about was the future and if I would have one. But that lady's words pulled me out of that spin. I thought 'am I going to spend the next year feeling like this? - with my life on hold and the people around me suffering for it?' All I had thought about was the coming appointment and what the scan would say - as the phys was obviously confident of the results - but doctors can be wrong..... Its now been 6 months since then - I only got to see the neuro 6 weeks ago. That was a long wait, but I was OK, because I was getting on with my life - to the best of my abillities and it feels so good. I can't work as much as I could before, but I will never take it for granted again. I love my work and I feel so lucky to be able to do it TODAY - even if its for 1 hour - never mind tomorrow, I'll cross that bridge when I come to it. Lifes too precious to worry so much sweetie. Do everything you can, while you can and enjoy it. If its MS, its MS and you will go on. And life does'nt have to be hell - it can still be great - It'll just look a bit different from what you planned.
Oh yeah - neuro said nothing about numb vagina because it was all part of the bigger picture I guess and as I don't have a partner (I'm a single mum) it was the least of my worries.
All the best to you sweetie - I really hope you take this message in the way it was meant - know what you're going through and how hard it is - just wanted you to know that its possible to feel better without depending on a diagnosis.
Good luck
my new neuro thinks I do have ms and i am getting a spinal on monday, I have hyper reflexes and neuropothy in my feet, my fears are so elevated I just want to die, how will I learn to cope??????????????????????????????????????????????????????
you are not alone, we are all going through this. I have had 2 spinal taps . They numb your back first , you only feel a little pressure. You might get a headache after, just stay flat and drink alot of water. They look for oligbands and protein that go up in autoimmune problems like MS.Did the Dr. prescribe any antianxiety meds. I am a nurse and I was totally obsessing about my symptoms and MS. I couldn"t sleep my mind just kept going . My Dr. said I was like a run away train. My anxiety made my symptoms worse. He said he had to stop the train to see where I was. Now that I am calmer and sleeping, my body is healing. Stress and the unknown make everything so much worse. This is the second time in 13 years I have been through this. Good luck
Spinal tap- My neuro said my problem are migraines. She diagnosed me with migraines. My MRI said tiny areas of nonspecific increased white matter signals. She said many different causes possible. Old stroke, I doubt im only 29 and never have had one, MS, migraines. She didnt mention anything what the radiologist said because I found the report on the MRI cd I went in to get from the hospital and she didnt know it. Radiologist said could be microvascular disease or previous traumatic injury. Took 10 days for her to get to my report, but my report was made out the day of my MRI. No return phone calls until the 10th day and they answered and said she was looking at my report. Yea right. They then made me wait a week before even telling me my results. I get in there and she wants to get me out. I feel something wrong in the back of my neck but she wouldnt even look at it. Just gave me prescriptions for drugs for migraines. Then she hurried up and left before I even got out of her office myself. Anyways she said she doesnt think I have MS and nothing to worry about. I have no characteristics of MS. No family history either. She diagnosed me with migraines. Then she said she wanted me to do a spinal tap for a MS panel. I was like huh? Just look at my neck where I feel like my problem is. Ive got the impression shes kind of in it for the money. Im wondering, you think neuros would order spinal taps and other tests, just for more office visits and more money?
The spinal tap is just one more way of ruling stuff out. My radiologist read my MRI of head and c-spine as neg. I work in an ER and made him read it that day. Two weeks later at my neuro appt I see the neuro circle these two small areas . Tells me it could be CNS lyme or active MS. After spinal tap{ which was neg for lyme and ms} she said well even migaraines can do that. I am alot older than you but have certainly had my share of headaches. Get the tap , if an autoimmune response like Ms is present there is elevated protein and oligbands, any infection could show up too. Sounds lke yous will certainly be neg.
Sorry I haven't been back to you hun - been a little unwell myself in the last few days. But I have some important things to say to you. Remember that my physician told me that he thought it was MS - in fact worse than that, he said it was a demylinating disease and when I looked that up, I discovered theres worse things than MS. So of course I totally freaked out and expected the worst. Then the lady at the MS society got very angry when I told her what he'd said. She said that no doctor or specialist should ever say they 'think' its MS - there are other possibilities that need to bee ruled out. Still I went through hell anyway because he'd said it. The MS society lady is right - I went through hell for what? As I said he was so shocked at the MRI results because he thought he knew. And guess what - I had hyperreflexia and neuropathy in my legs and feet - plus I had the babinski sign.
Hang in there hun. I think that erpatti makes a really strong case for anti-anxiety meds - are you on any? I took then for six months just to get me through that terrible time and I really don't know how I could have managed without them - they helped enormously.I took a bit of persuading at first as I always believed that I shouldn't need such things, but I sure did. I'm off them now and I feel great - no withdrawls or anything because I was ready.
My best wishes to you sweetie - good luck for tomorrow and be strong.
-Sheila.
Hang in there hun. I think that erpatti makes a really strong case for anti-anxiety meds - are you on any? I took then for six months just to get me through that terrible time and I really don't know how I could have managed without them - they helped enormously.I took a bit of persuading at first as I always believed that I shouldn't need such things, but I sure did. I'm off them now and I feel great - no withdrawls or anything because I was ready.
My best wishes to you sweetie - good luck for tomorrow and be strong.
-Sheila.
thankyou for your encouraging words, i forget, do you have ms? its hard to keep up with all these posts with who has what disease. i am truly scared, actually freaking out today, crying all the time from fear, everything else has been ruled out. so you have neuropathy? do you still have it will it get worse? what about hyper reflexes?? god i cant stand this fear, i want to colapse, i do not know how i will be strong. i wont be back on for a few days to say how my test went, but thanks for thinking of me!!
hi to all, just wanted to say i finally had my lumbar puncture today , and to anyone who fears of having one it was honestly virtually painless so there is nothing to fear, now i await results.
They made me feel better[,the forum dr comments] but i will still worry till i get my results on the 18th. i am surprised at how easy the test was, but i have heard that it really hurts some people, guess i was lucky, i would go back for another one without hesitation.keep in touch as to how you are doing ok!
Hi, Great to hear you tap went OK. And so encouraging to read what the Forum Dr said! Good, Straight forward info which puts into a nut shell all that I've read in laymans terms. I strongly feel that the neuro was very wrong to say he thinks its MS. No, I have not been diagnosed with MS. My MRI was negative so the Neuro's words were "I think we can reasonably rule it out at this time" Obviously hes covering his but as there is the odd case of negative 1st MRI, but its pretty rare. Still don't know exactly what the deal is tho as I had all the symptoms the Forum Dr mentioned plus others and as I said, a few problems still persist 6 months later. The neuropathy is persistantly in the toes of my left foot. They cramp, move by themselves, buzz, tingle, and have nerve pain at times. This sometimes spreads up the side of my leg, but is always in my toes. I've kind of gotten used to it now - I don't notice it as much - its the not knowing what causes it that bugs me at times. Still, I try to keep as busy as possible so that I don't think about it. Will it get worse? Who knows - The neuro is addopting a wait-and-see approach to see if it comes back.
oh so did you read the response i got from the neoro dr from 3-26? i was checking right before i left for the hospital and finally there was an answer, it made me feel alot better, have you thought about switching neuros? it took me four neuros till some one would actually say it may be ms and ordered a lumbar puncture, it has been 15 years since i have been searching! keep me posted with how you are!
Switching Neuros? Hahahahaha. I live in a lil old tin pot city in New Zealand. Population of around 30,000. We have a public hospital here with no Neuro. Instead we have Physicians who have the job of seeing whether you're sick enough to see a neuro. Took me 2 months to get to see him - tried to go private to jump the queue, but that would have taken even longer because everyone was trying to do that. The public hospital is free, the private system costs alot. I then got a referal 6 weeks later after the MRI results came through. I had the choice of one Neuro - an hours drive away in a bigger city - He has an excellent reputation thank god. I asked if there was any other choice, and was told I would never get into the others in other large cities as there is a serious shortage of Neuros in this country. I was told it could take a year to see my particular neuro in the public hospital sytem so I had to pay a lot of money and wait another 3 months to see him for a hour privately. He said he'd like to see me again, but I can't afford to. So I'm just hanging in there hoping I don't get any worse. The good news is that He said I will get in to see him quickly at the hospital if I become very ill again as he wants to do tests while I'm ill and not ages later like last time. Hopefully I won't need to do that, but I have a feeling this won't be the end of it - my eyes are going funny again and I'm feeling hot and dizzy - hopefully its nothing. God I ramble on sorry. I just like talking to people who understand. Healthy people just don't wanna hear about it. Hope you are well.
thats a shame you have to wait so long to see a dr, i have the freedom to see any dr any day of the work week, and trust me i have been to alot of them with this undiagnosed problem of mine, i am having the worst nightmare of a headache, i wonder if its from the spinal? NEVER HAD ONE THIS WAY BEFORE, I LAYED FOR 3 HOURS AFTER WORK TODAY AND THE PAIN , OH I JUST WANTED TO DIE, IT WENT AWAY A LITTLE BUT NOW THAT I GOT BACK UP IT IS SO BAD AGAIN, I AM CRYING AND I AM VERY SCARED, I WISH I COULD TALK TO PEOPLE ON THE PHONE INSTEAD OF SEARCHING HERE EVERY DAY BUT I HAVE MADE SOME GREAT FRIENDS HERE. I HAVE TO GO, ITS BAD RIGHT NOW.MY EYES HUIRT WHEN I MOVE THEM, I PRAY THIS DOES NOT MEAN OPTIC NEURITIS.
YES PEOPLE LIKE ME DO UNDERSTAND VERY WELL, WHATS WRONG WITH YOUR EYES?? SO SORRY I CANT TAKE THE PAIN RIGHT NOW.
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