OH MY!!! How frustrating for you. I am glad you decided to jump on over to our forum. The people here are amazing.
I am far from an expert in MS, but I do agree you need a new Dr. I strongly think this should be a new neuorlogist.
I have been dx'd with MS for almost a year now. My sx's have gone straight down hill, and I have had little to no MRI changes. My Neuro says that does not matter, lesions DO NOT always show up on an MRI.
If you go to our health pages on the top left here, you will find info about MS mimics, Lesions, how Lesions work and much more. Hopefully there will be some good info for you there.
It also your the criteria for diagnosing MS (which it seems to me you fall right in line with, but I of course can not dx you).
Hopefully Quix will jump in here with some words of wisdom.
Take care, stick around and keep us posted. We have about 50% of the people on here that are undx'd so you are more than welcome to stay with us as long as you need.
So nice to meet you! Thanks..frustrating is not the word.. This forum is great and I have read and learned so much from the Health pages already and re-read the Health Pages..I guess this is why I was a bit confused with my current situations.. I think this forum is awesome as well as the one for limbo-ers like me..
I am certainly not going against what a doc is saying but I guess I would feel a little better if I new everything was done to come to that conclusion and I am feeling like it has not. I feel like it's a little conflicting info - No MS but it's a wait and see kind of thing? It is so confusing to read material but experience something different. I know it is a process and maybe I am just begining so need to be patient.. I appreciate your advice and will stick around for more!
Do you mind me asking was your diagnosis an easy process...I shouldn't say that, I apologize, what I mean was did they have a difficult time coming to your diagnosis or was there clear diagnostic evidence from the tests that it was MS.
I hope you are doing well and you like your doctor. I appreciate you reading my post and popping in.
I am sorry that your diagnosis is going to be so confusing, or lack of diagnosis. When people get migraines it just makes it more confusing as migraines can mimic many symptoms of MS and of cause you can have migraine aura symptoms without headache pain, there are many types of migraines too.
Migraines can cause lesions on MRI and I would say that this is what they are thinking your lesions are from but however they can't always be certain, it sounds like your doctor is still wanting to monitor you to see if there are any changes but because at the moment there hasn't been it might make MS less likely but I would say it can't be ruled out completely, I am surprised that you have not had a LP done, sometimes this can help them with the diagnosis.
From what you have written in your post I would say that your Neuro has not ruled MS out completely but he needs more "evidence" to make a confident diagnosis, it sounds like he is still watching you to see what happens, migraines are NEUROLOGICAL and can sometimes be part of the MS as well. Unfortunately sometimes you have to be patient when it comes to a diagnosis, but perhaps you could go for a second opinion somewhere, all the mimics need to be ruled out like Lupus, Sjordens, Vit B12 etc. etc. Have you had nerve conduction tests done? Do you suffer from high blood pressure etc.?
I think (but I am not educated enough) so just my opinion that 6mths is not long enough time frame to rule out MS, I am sure reading on here that many people go much, much longer than 6mths inbetween attacks so just because your MRI is showing no changes that would not rule out MS. Have you had an MRI done with Gadolinium? This should light up the active lesions but even then there is a small window (time frame) in which to have it in.
I share your frustration and I hope that you get some answers soon... if your neuro can only give you 5 minutes I would be shopping for a new one.
How are you? I have had EMG and he said it was normal. No MRI's with contrast ever, all without and my blood presure is perfect..they monitor it as well...
what i am surprised at is that he has not tried to rule anything else out, I have had NO bloodwork done and if he thinks it is migraines, I thought or would think, that maybe my migraines are changing and he might say let's CHANGE meds to see if it helps with symptoms....I can't see, although what do I know..how stopping my migraine meds are going to show him what's going on in relation to symptoms unless he thinks it's medication related but he never stated it like that..
When i first complained about cognitive issues I told him I was concerned about it because he had never increased my meds (Topomax) which I knew cognitive issues was a side effect, however, i had been on the same does for 2 years so he agreed it would not be a side effect of meds causing cognitive issues thus prompting MRI in June...
I just read alot of people who seem to go through alot of tests so quickly it seems (even if they don't show lesions) to rule out other things and my guy has not done the one's I read about...unless he is a slow poke.. I am curious if this is not MS what about all the other, as they say mimics and conclusions in MRI resports like vasculitis and such.
I have written my questions down for next appt.
Thank You. I hope you are well! Talk to you soon!
If I was you, I would seek out another neurologist. You need to have the proper work up not only for MS, but also for the MS mimics, and MS is a diagnosis based off of the elimination of those mimics, your neuro exam, and your history on how your symptoms act. Your current neuro just doesn't seem like he knows what he is doing.
It seems like neuros now a days jump to the migraine diagnosis. I know that several of my doctors have told me that spasticity/ muscle spasms does not fit the migraine diagnosis, which seems to be what you are describing in your leg and foot. Spasticity will also add to the weakness in your legs. I doubt that your issues are from migraines, since you are on medication for that and are experiencing problems.
"So does it mean that just because lesions do not increase or change in size from one MRI to the next that it can not be MS or do they sometimes just don't show up and are dismissed." The MRI is used as a tool, and only a tool in diagnosing MS. It can not rule out MS. The MRI can not see everything. So you are right, sometimes they don't show up. Some people with MS can have an unchanged MRI for years, with or without medication. That's why it's so important that they use contrast to find the newer more active lesions. Sometimes the strength and the software of the MRI machine can have a lot to do with whether or not new lesions are seen. There is also something known as "silent lesions", they are lesions that are there, but can't be seen on the MRI machine.
Your neurologist isn't following the basic protocol for diagnosing MS, so who knows if he's even ordering the smaller slices on the MRI, since he skipped using the contrast solution and the MS mimic blood work. I think it's time to find a new neurologist.
Take Care & Hang In There
Thank you for asking your question, because I am in a similar boat and have been meaning to ask.
I have mostly minor sensory symptoms, but my mother has MS, which prompted my first MRI 7 years ago. I had many non-specific lesions. I have had 4 repeat MRIs over the years, and there has been no change. In 7 years. Nor have my symptoms gone downhill, though. All other tests (and I have been through the wringer) are negative.
I had a second opinion done by an MS-specialist at UCLA, and she thought she did see change on my MRI (she looked at my CD for maybe 2 minutes), so she was comfortable giving me a diagnosis of CIS, so I could take a DMD if I wanted to. But since then, my regular neuro ordered my films to be reviewed again by a "world-renowned" neuro-radiologist, and he said that it is absolutely stable. So, I am not sure what that means about my CIS?
So, while I don't have a diagnosis of MS, I do have lesions and have had no new lesions in 7 years (a lot longer than 6 months). And my doctor doesn't say 'no MS', but there's just not enough evidence to say 'yes I have MS'. So, I am still 'waiting-and-seeing'. If I were you I would push for more tests: LP, Visual Evoked Potentials, Somatosensory Evoked Potentials, and all the bloodwork to rule out mimics. That's all we can do is just keep looking for answers.
Best to you,
I agree with the others who have replied to your post. You need to have had a bloodwork up etc., I would be getting another opinion.
You can't rule out MS yet, i do hope you get some answers, just because your nerve conduction test was normal that doesn't rule out MS, that test is done for testing the peripheral nerves.
Keep us posted,
Thanks for all your input everyone!
Udkas - for the clarification on the EMG..I was wondering about that..When he was doing the test on my left side (becasue that was were i have been experienceing my symptoms) at one point my right side went bizerk---are you supposed to feel it on your right if he is zapping you on the left???god knows..
Anyways - Thanks so much for your input I am following through with my appt. in 2 months and have my list of questions..If he does not have answers I am looking for I am planning a second opinion...
Samandsprout - Wow - 7 years - you've been waiting a while..I'm glad this helped..I hope good luck to you.
Slightlybroken - Thank You..As far as tests I did not know if he was omitting steps because he already knew something and was not telling me until he was sure or if he was just trying to shut me up by doing more tests....As far as the the migraine thing...if it is all migraines then well my meds are not working???? anymore....AND do symptoms from migraines REALLY last THIS long? but yes, my cramping and tightness has gone away in legs and feet (for now) and I don't think a headache can cause that.. the weakness and fatigue is a killer too.. ..I can honestly say my current symptoms are numbing and tingling in left hand and foot. The tingling is turning into prickling pain in my hand though and the numbness is usually in my big toe ..The only symptoms on my right is a numb right thumb and at times prickling pain in hand..but mainly on left side do they stay.
Thanks for all of your input and support
At this point I am also in the wait and see category, although one of my neurologists really thinks I have PPMS. My lesions are all in my brain also and I was told they were not causing my symptoms.
Besides blood work, EMGs, evoked potentials, and an LP (which were all in the normal range), my neuro exam supports MS. Again, I am not a neurologist, but I have been told there are signs of spinal cord involvement from the clinical exam. It has to do with reflexes which I do not really understand. I have been to the best neurologists in the country and they all come to the conclusion that they should see a lesion in my c-spine or t-spine. It never happens.
Neurologists are very reluctant to give you a dx of ms if you don't have it because it can cause major issues in your life. I know it is frustrating and scarey, but I am getting treatment for my symptoms. I waited a long time for treatment because the neurologists did not want to do any harm or mask any symptoms. Hang in there.
Welcome to the forum! I hope Quix will jump in here and give her thoughts for you and Lulu too. I just have one comment: my orthopaedic surgeon, who conducted two EMG tests on me at my doctor's request, told me that EMG's rarely, if ever, provide confirmation of MS. They may provide additional evidence to support a dx by a neurologist, but they are not going to provide any type of proof of MS. I'm with everyone here who has recommended you seek a second opinion through another neurologist. Second opinions never hurt anyone. I know this has got to be frustrating for you, too, so hang with us whenever you can and learn as much as you can about MS. Sometimes, making a list of all your symptoms and insisting the doctor look at them, while perhaps adding a question of 'do you think this could be MS?' can really get the ball rolling in the right direction and it sounds like you're doing that, so a second opinion might just be the right next step for you. Best wishes and keep us posted!
Kov - Thanks for your reply. I have not had any tests except for MRI, EMG and EEG. I am keepng track of my sensory symptoms as I have been and am looking forward to my next appt. I am considering a second opinion s most of the forum has been advising. I have been told to take ibuprophin for pain. We will see. I understsnd that giving out dx. of MS or any other disease is dangerous without being sure it's the process of waiting that sometimes seems worse at times...
Adnvwsti - I appreciate the response on EMG testing...I was shocked when my limbs went flying..(was not aware of what the test did) I have my list going on and on and on.....I had asked the question of could this be...at my last appt. and then he sent me for another MRI and when it came back with no "new" lesions he said no changes and I asked so is it MS and he said no but it's a wait and see kind of thing???? but we will track your sensory symptoms.....and ween you off your migraine meds ...........NO MS - BUT? that did not make sense to me....and of course I got confused which is not hard these days for me...the answer did not make sense...I'll stick around .I have learned alot here. Thanks for your reply
I too am in a similar situation as you. I however was dx twice with MS only to have a doctor after each time tell me I do not have MS. Both have suggested that I was born with my brain lesions. This last doctor said it was because my MRI was stable at 1 year.
Like you, most of the symptoms that prompted this last go around at the doctors have since gone away. All of the numbness, tingling, etc. What has stayed is the weak leg and tremors.
I'll admit that I'm angry and frustrated at this point and I hope you don't get to feeling this way. I think you could use a 2nd opinion. Maybe a fresh set of eyes on your history and tests will be just the thing to help you out.
Hi. ditto to what everyone else has said.
NO CONTRAST???? It is in fact very important to have your MRI done both
with and without contrast AND using the MS Protocal.
Also, I do not remember if anyone had asked you or mentioned the strength of
the MRI machine. Are you using an opened or closed machine?
Open MRI are very low Tesla 0.7 if i'm not mistaken.....Waist of time and money!
Next is the 1.5....fair but guess what?? there is one even better....
Yep, the 3.0 Tesla! The strength is superior to the others and done correctly, w / without, contrast using MS protoca you will get much more info and a clearer picture of what is going onl. I believe you can find more on this topic in the health pages :)
The MS protocol uses smaller slices so that they can see more of the brain.
Well, I hope I made since and this helps in some way.
Thoughts are with you on the journey to diagnosis.
Take Care, Be well,
ps, please excuse any and all spelling and punctuationnn as the brain and fingers are not in sync tonight. lol
Well, now, Sorry I am late to this party. I have been busy and distracted the last couple days. You are in a continuous loop of indecision and mistaken assumptions with your current neuro.
This man is a dunderhead who believes that MS conforms to specific rules that he can rely on to make an absolutely 110% proof-positive, absolutely accurate diagnosis. I'm not sure what planet he is from, but I suspect you won't get a diagnosis from him until your lesions spell out MS in enhanced lesions! Sheeesh!
The diagnosis of MS is made from the history and the physical and the MRI is used only as a guide. The requirement is only that the MRI show lesions that are "consistent with a demyelinating process." They do NOT have to be classic in number, location and size, but just consistent. So the question to ask is whether your lesions "could" be MS. Obviously the answer is yes, since each radiologist has included MS in the differential diagnosis.
Now, the question is: "Does the fact that your MRI has remained unchanged for several years, while you have become more symptomatic, exclude MS from the diagnosis?" The answer to this is "No." MS can progress at it's own pace, galloping forward at times and being very quiet at times. Why did you not have symptoms back in '02? If this was MS then, the lesions were in spots that were not eloquent in speaking up with symptoms - the silent areas of the brain make up 90% of the brain's area. Your doctor is clearly tripping up over the believe that in MS the MRI constantly change. He clearly believes many of the "Lies Ny Neuro Told Me."
So, the doc is leaning toward believing that migraine disease is at the bottom of all of this. This is patently perposterous with someone who has constant, nonremitting symptoms. So, we are to believe that you are in constant migraine aura without any let up? That is just silly. Also,. recently we have heard from some neuro's who believe that a brainload of lesions is NOT consistent with migraine disease. I do not know the truth of this yet.
But, what I do know is that while migraine disease DOES cause white matter lesions, it does not cause the spectrum of neurological diseases unless you have been having ministrokes. So, the new symptoms you are having should show up as new, lesions characterized as small lacunar infarcts. You neuro is not keeping the WHOLE picture in mind. You have new symptoms. I suspect he also is under the mistaken belief that there should be a new lesion for every new symptom. Argghh! DUMB. He probably believes that every new lesion will enhance, no matter how big it is or when he does the MRI. Another of the great Lies.
So your current neuro is showing himself to be D.U.M.B. - a Doctor with Unfounded Medical (MS) Beliefs - several of them.
In the context of MS, your symptoms are highly suggestive. Fatigue, visual difficulties, asymmetric sensory problems.
It sounds like you have had 2 separate clinical "attacks". Is this correct? The first with the onset of fatigue and visual problems and the second with the left arm problems. Has this neuro ever done a really thorough neuro exam on you? Head to toe? Eyes, looking inside your eye at the optic disc, hearing, muscle strength, reflexes, balance, coordination, rapidly alternating hand movements, nose to his finger, sensation all over for pin pr*ck, cold/hot, soft touch, gait, standing with your eyes closed, facial movements -- has he done at least the majority of those things and repeated them as your symptoms changed? That is what a good, conscientious neuro exam looks like.
If so, do you have any abnormalities on exam?
When you went to see a "regular eye doctor" I think of an optometrist - generally not the level of exam and education you need. You need a dilated exam by an ophthalmologist.
The EMG is a test for "peripheral nervous system nerve disease." If it is positive it shows that the problem being tested for is out in the body in the peripheral nervous system - outside the spinal cord. If it is negative it adds weight to believing the problem is in the Central nervous system - meaning it "could" be from the brain. Your result is minor evidence of this being something like MS.
Now, you may not have told us everything this neuro has done to clarify your diagnosis. But, these are the things you should already have results for:
A whole slough of blood tests to rule out the mimics. Can you get copies of the blood work he has done?
AN MRI OF THE ENTIRE SPINAL CORD, both cervical and thoracic, done on the highest resolution MRI available. If the MRI of the brain does not yield the answer, the protocol recommends that the spinal cord be imaged also. This means with the good machine, using the MS Protocol, and USING CONTRAST.
He should order a VEP. Since the eye exam is normal in 64% of people with confirmed optic neuritis, you need a better test to pick up signs of the inflammation. The VEP is better than exam or the MRI in picking up subtle damage by current or previous optic neuritis.
I'm not sure what the sense in weaning you off the migraine meds is. So, you come off and have more migraines. What does this prove except that you get to have sick headaches and that the med was working. If you don't have migraine after coming off, it only means that you don't have migraine during that time.
Do I think you should push this Neanderthal to do the tests we list for you? Heavens, No!
It is the job of the neurologist to be thinking all of this through and seek the most useful work up. He should KNOW that you need a spinal cord MRI and likely an LP. He hasn't even done the basic things that have the highest yield in diagnosing MS.
You need a competent doctor.
My brain MRI has been stable since 2005. My spinal cord MRI since 2007. I have definite MS. There are no rules about how long it can remain stable, while still accruing more symptoms or relapses.
Yes, an MRI which shows new lesions, and occasional enhancement with perfectly placed lesions makes the diagnosis much easier. And these DUMB doctors probably have only those people with perfect MRIs in their practices. They have left the others to twist in the wind.
The MRI can remain static for indefinite periods.
The lesions need only be "consistent" - UNLESS you are using MRI data to FILL IN for missing clinical attacks and lesions as allowed by the McDonald Criteria.
When MS is on the list of possible causes the MRIs must use contrast and must include an MRI of the spinal cord.
I appreciate you popping in and explaining this to me..
I am not missing anything from tests I have had...I can not remeber my initial exam when I went to him for headaches but the last exam when I presented with sypmtoms was NOT as extensive as you described above....no pinprick, no hot and cold but did check sensation by touching each side of me with hand and asked me if I felt differences, did check strength and reflexes....absolutely no bloodwork done, although Lymes was ruled out by another doctor. I have only had the EMG and EEG to ruleout epilepsy.
He discussed at one point a MRI of spine but then never ordered it... I really don't get the migraine med thing. That's a mystery and is on the top of my list of questions..what the heck AM I going to do when I end up with a migraine and i have no meds....
As far as second opinions do you reccomend a second opinion with another neurologist or should I seek out and MS specialist or is that only necessary after being diagnosed?..AND should I bring all my MRI reports/scans I have had or have him/her start new?
Thank You again for helping me and trying to put this in perspective. I appreciate it.
I have a very good idea of what should be going on with my exams and scans.