Thanks all :)
DEFINITELY switching neurologists! I met with mine briefly to discuss MRI results... C spine MRI came back with no changes from 2 years ago (again though, no contrast, etc.. they were pretty much looking for degeneration only), so neuro said the degeneration there wouldn't be causing the symptoms. She pretty much said it could be B12 (we checked it like 5 times, including once last week! and she should know that...) and wanted to do another EMG to check for carpal tunnel?? My hands have mostly been fine, comparatively....
We also asked if there was a chance it was MS or something, because I had thought she'd pretty much ruled it out last time since there were no lesions on the MRI 2 years ago, and she basically said we could do a brain MRI if I wanted. Didn't say if she thought I should have one or not, just said we could... and tried to schedule one on the same machine as last time :/ Can't wait to get a neuro that has any idea what's going on and actually looks at my chart, talks to me, etc. Eesh.
Anyway, I hope you all are doing well! Thank you again for all of your replies :)
Sorry I'm just getting back to you. Been a strange week.
In answer to your question, yes and no. When I switched to a new neuro, he spent a good while with me, reading over everything I've already done and listening to what I had to say before doing a light version of the typical neuro exam. He stopped after the foot scrape thingy and testing my knee reflexes though which were both positive, I guess. I'd had them done a thousand times, but he saw them differently than my first neuro. This being the case, he did order a new MRI (a lot of drs have preferred imaging centers, etc, and like to use the people they know who do the scans just how they like them). I also had to redo the VEP which was no biggie, but many other tests that I'd already done did not have to be repeated. Honestly though, even if I would have had to do it all again, I think it would have been worth it. Best of luck to you and I hope you get some answers soon.
Laura
I'm sorry you ended up in the ER, with still no final answers, but at least you were examined whilst it was happening so the abnormalities will be noted in your records. The tests that are scheduled, "c-spine MRI and an EEG" are commonly RX.
The c-spine MRI will be probably looking for any changes from the last c-spine you had and considering the last time had "some sign of degenerative disease in my cervical spine" i'd say thats possibly what the focus is on at the moment. btw pwMS can have clinical signs on both sides of the body, 'predominantly' though they have had MS for a long time, both side pre-dx is usually whats classed as a 'red flag' leading aware from MS.
"degenerative disorders of the cervical spine. These affect adult patients of any age, with a tendency for particular disorders to affect certain age groups. Cervical disk herniations are more characteristic in the young (less than forty-years old), while cervical spondylosis (spon-dee-low-sis) and stenosis (sten-oh-sis) are typically found in older patients."
http://www.spineuniverse.com/conditions/neck-pain/degenerative-cervical-spine-disorders OR http://emedicine.medscape.com/article/305720-overview#a0199
EEG is probably commonly used to test brain waves for migraine and epilesy but it will also "help find out if a person has a physical problem (problems in the brain, spinal cord, or nervous system) or a mental health problem." etc see
http://www.webmd.com/epilepsy/electroencephalogram-eeg-21508
I'm not really sure if cervical disc disorders can cause 'all' your sx, maybe, i tried looking for neurological connections and other than the word mentioned occationally, i didn't come across anything specific. This is pure speculation but if you seperate sx of migraine and sx of cervical disc issues, then they're basically all there. So again speculating but its possible that they are not connected to each other or possible that one condition is exaserbating the other in environmental situations eg school.
Its a long road sometimes to dx, its true there are many conditions that mimic MS, so try as best you can to stay relaxed, whilst they try to work out whats going on, it just may not be MS. As i said it can take a long time to dx so pace your self and remember to take care. :-)
Cheers............JJ
I hope your LP goes well!
I really want to switch.. it's overwhelming though. When you switched, did you have to start all over? :/
I agree with Kyle. I'd replace your neuro. And now. Doctors have an absolute responsibility to tell you why they want you to put any drug in your body as well as why they want you to do any tests. After all, it's your body and the ultimate decision should be yours.
I would also consider switching to an MS specialist and I'd do it now while your sx's are in full swing. Even if this turns out to be MS, s/he will be adept at recognizing what else it might be instead. They do seem to have an eye for it though.
I went to a neurologist for 4 months with no real solutions. She could never make a firm dx, but was sure that 90% of my sx's were idiopathic and all in my head and wanted me to do a serious operation for the other 10%. She even promised me that I could not and would not have MS. It took just one appointment with a neuro who's not even a specialist but has a lot of MS patients and he was alarmed at my previous possible dx - it was so far off base - and got me started testing for MS right away. I'm still in limbo waiting to have my LP done again, but he's ruled out everything else and says he'd like to observe - frustrating again, but at least I have a better idea of what's going on than I did (most of the time).
Another thing - there are plenty of people who are dx'd with MS who have problems on BOTH sides. For some it's one side or the other, but for others it's both feet/legs, etc. I've heard it called the snowflake disease because every case is unique.
I've also heard that there are around 100 diseases that can mimic MS sx's. Sounds like you've ruled out some of them, but I'd proactively go at ruling out the rest of them with the help of a doctor who will listen and explain. Best of luck and I hope you get answers sooner rather than later.
A doctor that doesn't have time to exlpain anything is a doctor that needs to be replaced. That's completely unacceptable.
Kyle
Thanks Sarah :) I'm glad your LP experience wasn't too bad :) That does make me feel better, it still sounds so scary but maybe if it does come up again I'll be better able to handle the idea of it. Also, I'm sorry you had to go through so many neuros! I'm kind of scared to change mine.. though, also scared to ask her questions, obviously :/ She's slightly intimidating...
Anyway, sorry if it comes across like "DIAGNOSE ME!" haha. I'm mostly just wondering if anyone here has had similar experiences. I haven't actually heard anything on this forum about people being given an EEG? Or been put on a week's worth of steroids when they don't know what's going on for unknown reasons?
Also, I have seen a lot of "that doesn't sound like MS" to other people, and I guess I was jsut wondering if mine does sound unlikely to be MS, because the doctor doesn't seem to be considering it at all, which means she doesn't see any reason like to do a better brain MRI to try to (get closer to) ruling it out conclusively.
I dreaded the LP for years and years and when I had it done, I didn't even know it had been done..........the only thing I felt was the pressure from the bandage being put on because he held his finger there for a minute for finger pressure.........
you may have to visit several neuro's. I went thru 3-4 before I found one who was genuinely interested in solving my problem and he was recommended. I travel 465 miles one way to see him, gladly,the other 4 were " in town".
keep a journal, it will be important later! Keep looking and you are welcome back anytime......we are not doctors but collectively have been keeping our own notes!
Sorry to post so much. I hope everyone is doing well.
Ended up in the ER Wed night because the fiance was so scared since I had slurred speech (still comes and goes now), myoclonic jerks, and eye pain/random movement/occasional feeling like they're rolled back in my head and can't get them forward/couldn't see...
They did a bunch of tests (blood work, CT scan, EKG)... everything was normal (except the neurological exam.. couldn't walk heel to toe, really brisk reflexes, weakness). They sent me back to my neurologist yesterday who wants to schedule an c-spine MRI and an EEG. She also gave me methylprednisolone, gabapentin, and cyclobenzapr. But she didn't have time to explain ANYTHING. I'm so confused, I have NO CLUE what she's testing for or why she decided to give me those meds (though I've googled them)... She did mention the degeneration of the spine but I didn't think that could cause head issues too? And she seems to have completely ruled out MS.. which is good, right? But it's frustrating because I'm not sure why...
I feel like a drunkard walking around school... floating spots in my vision, jerks, balance issues, occasional slurred speech. Eesh. And I feel like there's NO ONE I can talk to! My fiance and mom are the only ones that know what's going on and they get just get scared when I say anything. I am so depressed and alone and crazy :/ And have no clue what's going on.
Thanks guys. I think I'm going to try to make an apt with a GP first and see. Also, I hadn't realized, but I guess it's not likely MS after all because the weakness/shakiness/numbness/burning/tingling is on both sides usually? (Looking at Spagheddi (sp?)'s post..)
I just wish I knew what was going on! The past couple of days I've been having a lot more muscle spasms and a lot more facial/neck burning sensations (spasms at all are new this week... before it was always just slight tremors only I could notice and feeling weak/shaky..., and *most* of the burning were in the hands and feet). Last night was the worst... full body jerks every 30 sec or so for about an hour :/ And there have been occasional ones in classes, which has been awkward. I'm much more used to having symptoms not outwardly noticeable! I have noticed the symptoms seem worse when I haven't slept enough... up late a couple of nights in the past week finishing hw and the days following were miserable.
I totally get what you're saying about doctors thinking you're crazy!! I had one tell me that my symptoms would go away if I just got a job and stopped concentrating on them. After that I was afraid to go to another doctor and six years later I finally decided to stand up for myself and make some noise! MS kept coming back to my mind and because I wasn't willing to let it drop I finally got the tests I needed. I was diagnosed in October 2011. No one knows your body better than you do! Good luck!!
Chris
Hi zrde :-)
If I read your original post correctly your only MRI studies were done 2 1/2 years ago? That's a lifetime ago. As Lulu pointed out, symptoms can manifest before lesions appear on MRI's.
As to the LP, fear not. Many of us have had them and lived to tell the tale :-) Mine was completely painless and a total non-event.
You have unresolved symptoms that may or may not be related to MS. Don't assume, based on 2 1/2 year old MRI's, that it's not MS. Let a qualified MS specialist figure that out. Keep looking!
Kyle
Firstly, thank you, thank you, thank you for responding! It really means a lot to me. I've been watching this board for a while before ever posting, and I really respect the knowledge and understanding you all have and I appreciate you taking the time to answer my questions.
You have all seemed to agree that it still could be MS or a number of other things...I was just wondering, what are some common alternate diagnoses after being in "limboland" as you put it? I know they've tested for lyme, thyroid issues, B12, etc etc as well... would any of that still be likely after having negative tests?
Also, there is a lot of stress in my life, what with school and all, but no more than I'm used to. I'm certainly not used to this kind of reaction to stress.
I suppose I should go back to a doctor, though honestly I'm not sure the best place to go. Last run through, I went to many GP's, who ran blood tests and then kind of ignored me when the results came back normal. My neurologist, though very friendly, seemed done with me at the end of last time... Also, I'm not sure how much this matters considering there are still many possibilities to consider, but her specialties were sleep disorders and headaches? Is it important to have a neuro that specializes in MS to be able to rule it out or confirm it?
Also, I know that previously my neurologist made it sound like the next step would be a spinal tap if we were to continue the search. I know it's supposed to be terrifying, painful, and dangerous... did any of you have to get spinal taps? Slash if I were to go back and that were the next step, would you suggest it is worth it? :/
Sarah, thank you for the information. I'm not sure why but I was under the impression that if you had something like degenerative disease they would not even consider MS. Logically, it makes sense they could in fact both occur simultaneously. Did you find both at the same time? Also, I didn't know there were things a CT could find that an MRI couldn't, to be honest.
Hi and welcome from me too :-)
Hmmm I have to agree with whats already been said, if you were my daughter i'd be making sure you go back to the neurologist and i'd also be insisting on the internationally accepted MS protocol and a better strength MRI, 1.5's are the most common MRI strenght but i would think open bore is way outside the norm looking for MS.
It's true that your sx could be from numerous things other than MS and feasibly it could even be a combination of migraine and degenerative issues but its pretty hard to rule something in or out if it hasn't been properly tested. Think of it like this, the play station 3 is a much better unit, providing better details, pictures etc than the playstation 1, same sort of applies with the MRI. So from my way of thinking, MS isn't totally out of the realm of possibilities at this stage.
Aghhhhhh stress, being young, female yada yada yada well all so true but you know no matter what your age, if something is wrong, really wrong you'll know it. You better than anyone else, will know if your some one who often overly worries and gets too anxious about little things, and you know what usually happens to you in periods of stress and if none of this fits in with your usual reaction/behaviors, then it probably has nothing to do with psychological and more to do with physiological.
Regardless of if you decide to see the neuro about MS or not, what really needs attention would be the migraine's and apart from getting on board with self help techniques, you probably need to get an alternative medication, one that works better for you. So at the very least you'll need to see your GP about that and whilst your there it wouldn't hurt to speak to him/her about all the other returned sx, right?! :0)
Cheers..........JJ
Gonna muddy the waters here some, but our forum is full of suggestions!
a 1.5 can miss a ton of things.....
I'd insist on the lumbar, since you are not finding anything else and I'd hammer for a better MRI.......open MRIs often miss stuff......AND it needs to be specified "to MS protocol".
now that you armed with what you need to know about MRIs.........I will tell you that I have MS and I have degenerative signs in my neck and lumbar and sacral area.........go figure
My neuro always insists that his pts have a CT of the cervical area because spinal problems can show up there, pinched nerves, etc.
Then I will discourage you by telling you that some of us have spent years trying to prove our MS case and called everything including crazy!
There are also other diseases that mimic MS, lyme comes to mind.
Make them tell you what they give you each med for or don't take it. You deserve that from any doctor. Be proactive!
We welcome you, there are many who are without Dx or in limboland and although we are not happy when getting our "label", at least we can look in the mirror and know we are not crazy.
There are some wonderful help pages on the right side of the page that may answer questions for you. We don't consider any question silly, we all learn from other questions and sharing.
Keep asking, don't accept "pat" or simple answers, ask people to explain and reword if you don't understand, keep a copy of everything (you'll have a bin full before you are through) and keep your chin up. Sounds like you already have a full plate and some could be stress...........
Sarah
Hi and welcome to this place where lots of blabbering goes on regularly. Knowing what I know about MS, and if you were my daughter, I would personally take you back to the neurologist for another look. Sometimes it takes years for MS to show itself on an MRI.
The symptoms you describe could be a number of things, but could also be MS. Listen to your instincts. Just remember, this is not necessarily an easy diagnosis to get and there are many people here who spent years looking for answers.
I wish you well and please come back as you need, for answers and to find a listening ear.
Lulu