HEADACHES AND MS

[bengalcats]

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.

[bengalcats]

THANKS ZZZZZZZZZ I AM JUST GOING TO TRY AND RELAX NOW AND HOPE SOME OF MY SYMPTOMS GO AWAY. MY DR CANNOT EXPLAIN WHY I HAVE THEM SO FOR NOW I WILL STOP SEARCHING UNLESS THINGS TAKE A TURN FOR THE WORSE. THANKS FOR YOUR SUPPORT.

[bengalcats]

great news to all, my spinal tap came out clean and i do not have MS!!!!! thanks to all of you for your help with my questions and for all your kind words. i wish all of you good health.

[zzzzzzzzzz]

Congratulations!!!! Thats wonderful news! Did the Neuro have any idea what the problem actually is then? I still wonder about Complicated migraine. You said that it would be too simple an explanation and I do know what you mean - felt the same - I almost felt insulted at the very suggestion that I could go through all that and be told its a migraine, but thats where the complicated bit comes in and the more I read about it, the more I can believe it. And as I said, there is preventative medication available. I did'nt want to take it because I didn't like the side effects, but my doctor pointed out that I could end up with more perminant damage or even a stroke if I don't take it. Complicated migraines bring a higher risk of perminant damage from what I've read, so I'm doing what I'm told for once. Best wishes to you.

[bengalcats]

I will not know my results till tuesday, will post for you to know. I never had headaches in all my  15 or so years of these other problems untill this past sept where i had a headache for a month straight, they did say it was migraines, no medications helped and i tried four different kind , i doubt that migraines could cause all my other symptoms, that would be to simple of a diagnosis, i wish it were only migraines. well I will keep you posted. check back tuesday for my results. Happy Easter.

[zzzzzzzzzz]

Hi, Did you get those spinal tap results yet? How have you been?. I haven't been too good in the last couple of weeks, so I went complaining to my doctor again, and she insists that its probably complicated migraine. So I got on the net again and did some more research, and I have to admit that it does look like it could be. Just wondering if thats been a suggestion for you given your headaches - you don't have to have headaches all the time to have it - which is what confuses people. It is possible to have a migraine for months like I did and only have occasional headaches during that period. I found it hard to believe it could be the right diagnosis for me as I had some lasting neurological deficits from it, but aparently that can happen too - particularly with basilar artery migraine. Could be worth looking into if your results are negtive. I am now on preventative medication - hopefully that will make a difference.
Good luck.

[zzzzzzzzzz]

How weird! I just checked again, and my post was there this time. Wonder what happened there. Great the headache is gone. Will post again later.

[zzzzzzzzzz]

oh buggar!!!!(popular phrase in NZ - to be used when highly exasperated) I put a post on here yesterday - thought it was a pretty good one too, and I find today that it never came up! Strange because I know they confirmed that it had been posted. Maybe 'they' don't want me to post anymore because I ramble tooooo much. Actually, it wasn't all that long yesterday - just wanted to know how you are and if the headache has gone. Did you go the ER? Just hope you're OK - have been thinking of you. I went to the doctor myself today as I have crashed again - was doing so well too, but took on more work and obviously overdid it - its so hard to know where your limits are until you've passed them. I work about 15 hours a week and it looks like I'll have to accept thats all I can do for now. I think theres alot of freedom in acceptance - fighting just makes me more tired. So today I began proceedings to register as officially disabled. This means I have access to more oppertunities, I just didn't want to accept it till now. I would love to post my email adress, but I'm a little nervous about showing it to everyone - don't know how I can find the post with yours on it. Gotta go - all the best to you sweetie.

[bengalcats]

yes my headaches is gone, the headache was a resultof my lumbar puncture, i had to go back for a blood patch on friday and the headache went right away, it wasnt much fun. I will know on the 18th if I have MS or not, i am really scared to find out. some where out there my testing is complete and the answer is in my medical file just waiting for me to come in, i wish i hadnt gone for the puncture cause i do not know if i want to know! this is crazy, i complain cause   no one can tell me whats wrong and now that i may get an answer i dont want to know!!! my nerves are very bad right now, i hope if i do get bad news that i can learn how to move forward!! keep me posted on the doctor tomorrow!

[zzzzzzzzzz]

How are you? has the headache gone? did you get help for it? I hope you did go to the ER. I went in recently to ours when the pain in my back got so bad I couldn't function. We are discouraged from going unless its an emergency, but they were so great and its amazing the drugs they can actually give you that the doctor never would. I am off to my doctor tomorrow to demand more action. I don't know if it'll do any good, but I'm going to try again. It seems most of them think that if they give you some pills to mask the symptoms, then they've done their job.
I have been in daily pain for 5 years now from my thorasic spine and I didn't even get an xray till last year - what I have to do to get an MRI I don't know. Xray showed arthritis and my Dr said - get used to it - you're getting older - everyone gets back pain when they get older. Well I'm sorry, but I don't know anyone my age who has to live like this. Anyway, gotta go and take my girl swimming. Life goes on. Thank god my daughter gives me a reason to carry on living every day. Hope you're OK. -Sheila

[bengalcats]

seems like we are in the same boat, it doesnt seem fair to live this way and you being a single parent has to make it harder, i have a 7 yr old so i do know whatits like but i also have a spouse to help, have you ever posted your email here? they say we arent supposed to but when i first signed up i put mine in one of my posts, i didnt realize as i was so desxperate for help from anyone, i sent them a note to apologize and they said they could remove it if i wanted but i didnt get back to them yet, i saw other peoples emails here too,i will probably call my dr or go to the ER today as my headache is massive, dont know how i am even writting, i was up at 4 AM on here cause i couldnt sleep, will keep in touch.

[zzzzzzzzzz]

Sorry to hear about your headache. Apparrently spainal taps can cause them - my mother had this problem, but they messed hers up and moved her way before they were supposed to, and apparently thats why she had problems after. Could be and sounds like a migraine. The pain on moving your eyes can be caused by this. I have just had a day off work with one too. Been overdoing it because I was feeling good and instead of keeping things at that level in order to stay good, I went and took on extra work! So now I have to dissapoint people by cancelling stuff. What do you do? I am a painter/Artist and Painting teacher. I am lucky to be self employed in that I can decide when to work, but its not as simple as that - I have my agent and students wanting a piece of me. Its nice to be successful, but I do wish it had happened at a different time. I am 37yrs and a single parent to a 6 yr old daughter.
My eye problems are very frustrating as they are inconsistant. They started soon after the rest of the symptoms kicked in. Nystagmus 1st and then one day my vision went really weird. If I dared walk through a street or a supermarket aisle, the movement would make me feel sick. Colours were brighter for a while and everything was blurry. I couldn't read or watch TV, because of the movement but I still painted because it kept me sane. Ironicly, I had had my eyes examined 2 weeks before this problem began, so when I went back, the optometrist was amazed that they had changed so much. He said 1 eye was turning in and gave me glasses with a prism to straighten the vision. What a relief! I had seen the hospital physician the week before and he said I had Bilateral interneuclear opthalmoplegia (damage in the eye muscles)- said he could see the nerve damage through his opthalmoscope - one of the things that made him so certain of MS (this condition is mostly caused by MS). I certainly had the symptoms of it and yet, it was not picked up on the MRI taken 3 weeks later (I can't help wondering if my uncontrolable nystagmus during the scan blurred the picture) My eyes did go on to get worse, but the optometrist would not change my glasses as the condition is unstable. It improves and worsens periodicly. The Neuro decided that as I had had a slight squint as a child, (which resolved in my teens) the 'illness' I've had has probably brought it back. But it was never like this. The Neuro did not have time to check with an opthalmoscope to see if the Physician diagnosed correctly, but he said he did not think I'd had Interneuclear Opthalmoplegia (based on.....?). I guess he spent most of our hour trying to explain why it can't be MS because of the MRI results. When I showed him my list of symptoms at the beginning of the consult, he said "looking at this list, if you had not had a normal MRI, I would have expected MS too". He won't be doing any LPs or any other tests at this stage - prefering to "wait and see".
I know I should be thrilled to bits at having a normal MRI, but I'm not. In fact I feel almost cheated - I don't dare tell people that because they'll think I'm nuts or worse. I feel like - how can anyone be so ill and have nothing show up on the scans? I feel so undermined by it. I've tried so hard to keep a possitive attitude throughout this and I think I've done bloody well. But the truth is I've been shutting it all out because I'm bloody scared too.
God I'm rambling again sorry - I guess I mussed have needed to get that off my chest - bit down today - will hopefully return to former cheerful self tomorrow - cheers

[bengalcats]

YES PEOPLE LIKE ME DO UNDERSTAND VERY WELL, WHATS WRONG WITH YOUR EYES?? SO SORRY I CANT TAKE THE PAIN RIGHT NOW.

[zzzzzzzzzz]

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.

[bengalcats]

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.

[bengalcats]

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!

[zzzzzzzzzz]

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.

[bengalcats]

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.

[CCF-Neuro-M.D.-PW]

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.

[bengalcats]

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!

[bengalcats]

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!!

[zzzzzzzzzz]

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.

[erpatti]

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.

[erpatti]

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

[joshua217777]

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?