That must be so frustrating for you. It is hard to have symptoms and no answers. Even though i am no doctor, I have read that lesions don't always show up on MRIs. The Health Pages has a good explanation of the complexity of diagnosing MS.
Did they do a spine MRI? Often lesions can be on there too.
I wish I had some great and wise words for you, but I am not even diagnosed myself...still going through my tests.
I hope you find out something soon. Even finding out that stress caused stuff is better than nothing in my opinion.
You know your own body so continuing to be proactive is a good idea. In the meantime, find things to enjoy and celebrate :D
Normal results are good for sure. Can't say with absolute certainty you'll not get MS, but least it's said to not be on the table right now! Woo hoo!
So, since you have still have some things going on, did this Doc make any suggestion as to where to go from here?
Thank you for you're feedback:)
Shell- that's the thing he told me to sit back and wait. If new symptoms happen or things get worse than I'm always welcomed back. But as of now my nerves are healthy, my spine is healthy, and my brain his healthy. ( not sure how my spine is healthy since he never gave me a MRI on it). He said those tests he ordered would have showed even the slightest abnormality if something wasn't right...
He said for whatever reason muscle twitches and parasethia can happen to be begnign. At this is what he believes to be my case.
That's the 3rd doctor now that says relax I don't have MS. My GP only referred me to give me a peace of mind, my opthomologist concurred, and now this neuro.... I feel that I lost support with this " good news" because now my girl friend and family think I'm fine.
My next plan is to see a naturopath md doctor who is a great detective of finding out mysterys like me. I just hope I find out soon. I'm sick of people telling me it's anxiety. Thanks for hearing me out! I'll continue to update this saga as new details unfold. Take care until then:)
I will have my results tommorow and I hope they will be all normal like yours are. I know I will be frustrated that I still did not find the cause of my symptoms, but CNS diseases are very hard to deal with, so I will be so relieved if I do not have MS like my PCP and Ophtalmologist think I do.
That being said, I realy understand how frustrated you are, and I hope you will soon find out what is the cause of all that you are going through.
have u been taking any vitamins?
Good luck Tomorrow!!!! I hope one way or another you get a peace of mind!!!!! Let us know how it turns out.
I have only been taking Fish oil, L-carnitne, and CLA. The reason I take those is they do a great job of helping lose belly fat with combination of good nutrition and exercise. Summer is on its way and I need to get my boat body ready:)
Ferri, lol, I like the supplements! I'm going on a clean diet starting tomorrow and beginning my work out program. Summer is coming.
I get it. The test results are bittersweet. We don't want them to be abnormal but in a way it gives an explanation to the unexplainable.
When all my tests supposedly came back normal and my doctor finished my last Neuro appointment with prescribing medicine without explanation and did not have any of my tests to back up what was wrong with me. I felt abandoned.
When I had another smaller flare, I didn't know what to do... Both specialists I was seeing left me feeling alone without a plan so it is VERY good that even though your tests are normal you have a plan if you get sick again. You can call!
Truthfully, that is all I really care about... I want a doctor to give me a plan even if it's just "I'm here. Let's wait and see." Well, I really need them to figure out what's wrong with my vision too... that's a pretty big problem at the moment. ;)
(((Hugs from limboland)))
I don't know your sx or your history and I am not a dr, nor do I claim to know what you have but ALL my tests were normal too. For 18 yrs, all normal, even head MRI. It wasn't until they finally did a spinal MRI that they found lesions.
Since MS is disease of brain AND spine, not sure why they wouldn't look in your spine since they looked in your brain. My two cents is they cannot rule out MS until they do spinal MRI and have it come back as normal too.
my body could pass for a boat. oh ahhh. think the imp got lose and got myself on that one. but it was such a good one liner. LOL :-)
Glad your tests came back normal. I know its frustrating to have something going on and not know what. I've had a c-spine MRI but not a T-spine, but my neuro knows there is something there because of abnormal findings on exam. even with that and questionable brain MRI you can still get told "wait and see" card. sometimes it's all you can do. because if something is going on it will let it be known. lest that's been my experience.
I do hope you find your answers but hope too you enjoy getting your boat body ready.
Thats what I thought. Im surprised he wouldn't have thought to give me a MRI on my spine. Especially since he was so thorough right from the beginning by ordering all those different tests.
Is it common for the doc to order a brain MRI and a spinal MRI at the same time?
How many different spine MRI's need to be ordered to rule out MS?
Has anyone else had the same issue where the doc only gave an MRI on the brain and skipped the spine?
Now I'm worried again and I'm still convinced I have MS. Do you think I should call the office in the morning and tell the receptionist to leave a note for the Doc saying that I want a spinal MRI? I'm not sure how or what to say without looking like a hypochrondiac. Any advice is welcome please.
Yeah I totally agree!!!!!!! Did you're doctors order a spine MRI also? Was all you're MRI's ordered and taken at the same time? I'm just confused why I wouldn't have gotten one. I'm a bit worried honestly. But oh well. Stay patient and hopefully we will have our answers soon!
Keep me updated please on you're journey.
Hahah that was a good one... Hopefully you will find you're answers soon as well!!!!! If you don't mind me asking what exam was it where there were abnormal findings?
parts of the neurological exam. slightly brisk reflexes of knees ankles, can't lift toes up on right foot, can't walk a straight line if my life depended on it, nor touch my nose. close my eyes i fall down. then again put my feet together i fall down. LOL neuro says i would fail a field sobriety test, good thing i don't drink but you can't tell it by the way i walk. :)
drag my left leg more then really walk with it but at lest not totally dragging it any more.( well not all the time) leg weakness, right more then left. but then this all started with my right leg and it didn't improve much. right arm tremor. then in march added tongue tremor but it has gotten better.
my brain MRI is inconclusive because my age is against me on that. so I'm told.my next test is an LP. will be setting that up in June.
been in limbo last 5 years. mostly I just need to be able to keep working. that gets harder and harder. fauge has gone to completion of energy so I give up doing things I want so I can make it to work the next day. If I had the money i would really consider getting a wheelchair so I can go to the mall;stores;'walking' the walking bridge with friends that really like to do that. or even to go visit friends when they are in the hospital. I couldn't do that this week because i knew i couldn't walk anywhere near that far.
I do know how frustrating it is to wait. yeah sometimes it even s ucks. yet, I know others that have more problems then I do. I just have to deal with today. each day, I just have to deal with that day. not always easy but makes life better. laughing at myself and humor makes it right good.
sorry, didn't mean to rant so much. guess it's the steroids making me talkative and sleepless. at lest my neuro is willing to treat the symptoms. I am greatful for that.
Hang in there sometimes its a long road.
It is easier to see lesions on the brain than the spine. Also, most people with MS (80%) will present in the brain rather than the spine. So, it is natural for the dr's to FIRST look at the brain. For some reason, many seem to stop there.
I had three neurologists in 18 yrs and three gp's. Two of the neurologists and all three of the gp's only ordered the head MRI's. My current neurologist, is the one that ordered the spinal MRI.
Not sure what normal dr's do but if I am any example, many of them don't seem to look past the brain. I would call and request a spinal MRI or get a second dr's opinion.
Wow thanks for sharing! I cant imagine being in limbo for 5 years. The possibility of that really upsets me. I've been dealing with my symptoms only since December and I already feel like its an eternity. I'm glad you're neuro is treating you're symptoms at least:) Hopefully you will get some answers with you're LP in June.
Thank You for a great explanation on why its so difficult to get a spinal MRI. Wow I didn't know 80% of MS patients will present lesions in the brain. I guess that makes sense to check up there first. I just don't get why they stop there. Don't they teach this doctors in med school that the spine is attacked as well.
So let me get this right. Statistically overall its rare to get MS. Then on top of that, its rare to only have spinal lesions.(20%). Then on top of that to have all normal evoked potentials and a neurological exam I'm sure that we can say is rare too. So am I really this frickin unlucky? I mean seriously I never could win a raffle if it was out of 3 people. I never have won anything. Its always the person next to me. Now with this MS crap it looks like I'm beating all the majority of the odds!!!! That would be just my luck.
So I guess there really isn't anything to be happy about with my ''good results''. Instead its just going to make it that much more difficult for me to ever get a diagnosis. I read that men get hit a lot harder. Thats not good for me. I need DMD's now while I'm only 29. I have no closure at all and now my anxiety is though the roof.
I left a message to the doctor stating that my upper spine hurts and burns. He will call me tonight or in the morning. Im just going to say something like
'' yeah my spine is hurting, is it ok to get an MRI to see if anything would be causing these symptoms?"
Maybe that would be better than saying "Why didn't you test my spine for lesions, 20% of MS patients only have lesions in their spines"
Sorry I don't mean to be writing a novel. Can any type of MD write a prescription for a spinal MRI? Worst case scenario I have a friend that is a MD but he is not a neurologist.
My neuro called me back earlier and after I told him my spine is burning in my upper back he immediately cut me off and said I want you to get a cervical MRI and a thoracic MRI. I guessed I jumped the gun on this doctor. I'm very happy, one way or another I will get a peace of mind. If the MRI is clean then I'm burying the whole MS thing and looking for another cause. If it is MS then I'm ready to fight it. I'll be sure to let everyone know the results.
Hi i feel your frustration. I have had positive stuff for MS and still no diagnosis......
Have you had all the mimics of MS excluded there are loads.
Thats just a few...........................
The problem is so many of them show the same symptoms. I have had friends who have been diagnosed with M.E. only to be later diagnosed with MS...
Some diagnosed with MS, and then diagnosed with M.E. and so on and so forth.
The good thing is there is nothing going on as yet with your CNS so perhaps its time for you now to go and enjoy your life, keep a journal and if anything changes you can keep this to show your neuro if and when you need to see them again.
Its a waiting game.
Did you know for example that Montel Williams (american chat show host) he took NINETEEN years to get an MS diagnosis.
So anyway i would go and enjoy your life...and see what happens. Big hugs. maria