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How MS is Diagnosed
I suffer from lightheadedness/dizziness and muscle twitching all over my body for a couple months now. I had a T1 and T2 Brain MRI with and without contrast and it came back normal. When I visited the Neurologist, he said we can rule out MS. My ENG test results came back with a gait disturbance, even though I have no problems with my balance or coordination. I also suffer from mid-lower back pain due to a back injury 10 years ago. I always thought for MS to be ruled out, they need to perform an MRI on the brain and spine. The neuro also said there's nothing in my back that can cause dizziness/lightheadedness. After the evaluation he said he doesn't think there's anything wrong with my brain, however he still prescribes me with Gabapentin and Tizanidine HCI. Should I trust this guy or try to get a second opinion?
A normal MRI of your brain is reassuring as far as MS is concerned, but is not absolutely definitive. Gabapentin can also be helpful for neuropathic pain, even if it's origins are not in the brain/cord.
Everything HVAC told you is true. especially the part about neurology time is slow. it took me a year and and a half and 2 brain mris, two spine mris, and a negative lumbar puncture , then some abnormalities on an evoked potential test before i insisted on a second opinion. i took my mri with me to the new neurologist and he took one look at the cd and turned around and told me i had ms. he said it had progressed to far for oral meds to be effective, went straight to iv infusions every 4 weeks.my mobility had dimished, my vision and my coordination and memory and the 1st neuro dismissed it as nothing. i then had a 3t mri which reveled a significant spinal lesion. Please don't prolong and take any chances seek out a 2nd opinion as soon as possible. i wish you the best.
OK, I just have to chime in here. I've been reading this forum for a while now, and the horror stories of just how long some of these MS diagnoses take, and all I can think now that I'm older and wiser (you know, since my first attack last Sept) is that I think I've had one of the speediest diagnoses on record. I had the attack on Sept 14th, and got a diagnosis on Nov 20th, and started Tecfidera on Dec 20th. Pretty much warp speed in Neuroland....
I'm thinking the only reason for that must be that both the brain MRIs and the LP in my case, were pretty damning - characteristic brain lesions plus 8 O-bands. (But a clean spine) I was thinking, well OK, no dissemination in time and space here, so CIS? But apparently, when the doc took the test results, stirred in my somewhat advanced age and how I presented (motor symptoms only), mixed in the totally can't-be-something-else bloodwork, and a nice dash of some suspicious incidents from my past (noted but attributed to other causes and thus not or only minimally told to any doc at the time), he gave that firm diagnosis without batting an eye. And in the subsequent 2 months between that first brain MRI and the one I had to do for baseline before starting the Tec, I'd had 2 more lesions. So he was spot on and speedy.
He's a young neuro affiliated with a teaching hospital and is specializing in MS, meaning perhaps that his knowledge is fresher, and/or his speed may just be faster? I don't know, but as I read more and more of these, I'm realizing daily, just how lucky I was to NOT get the typical delaying things that more than a few of you have had. Delays you have had even when some of you have met the criteria and then some.
I am glad too, that I didn't ultimately have to deal with some dismissive doc. Although the one at the ER the night of my attack, pretty much looked at me and let me know from that look that he thought I was just nuts. I wanted to deck him. Still do actually. And my GP (who was booted to the proverbial curb early on in this process) said, "Well, your neurological exam doesn't show anything." Umm...really? That, and when I complained of the frustration of not being able to grasp anything without knocking it over and felt I was missing the mark all the time, he said, "There is nothing neurological that can make you "miss the mark". Ummm...intention tremor much? We could all no doubt have a long chinwag about the biases of doctors, or their sometimes obvious impatience with things that don't present like the textbooks. I'm thinking neuros at least know that almost nothing they see will be textbook and it makes them less impatient. Of course, the patient is often not quite so mellow about it!
Anyway, if one with MS can feel lucky, I'm feeling it right now...
I'm thinking the only reason for that must be that both the brain MRIs and the LP in my case, were pretty damning - characteristic brain lesions plus 8 O-bands. (But a clean spine) I was thinking, well OK, no dissemination in time and space here, so CIS? But apparently, when the doc took the test results, stirred in my somewhat advanced age and how I presented (motor symptoms only), mixed in the totally can't-be-something-else bloodwork, and a nice dash of some suspicious incidents from my past (noted but attributed to other causes and thus not or only minimally told to any doc at the time), he gave that firm diagnosis without batting an eye. And in the subsequent 2 months between that first brain MRI and the one I had to do for baseline before starting the Tec, I'd had 2 more lesions. So he was spot on and speedy.
He's a young neuro affiliated with a teaching hospital and is specializing in MS, meaning perhaps that his knowledge is fresher, and/or his speed may just be faster? I don't know, but as I read more and more of these, I'm realizing daily, just how lucky I was to NOT get the typical delaying things that more than a few of you have had. Delays you have had even when some of you have met the criteria and then some.
I am glad too, that I didn't ultimately have to deal with some dismissive doc. Although the one at the ER the night of my attack, pretty much looked at me and let me know from that look that he thought I was just nuts. I wanted to deck him. Still do actually. And my GP (who was booted to the proverbial curb early on in this process) said, "Well, your neurological exam doesn't show anything." Umm...really? That, and when I complained of the frustration of not being able to grasp anything without knocking it over and felt I was missing the mark all the time, he said, "There is nothing neurological that can make you "miss the mark". Ummm...intention tremor much? We could all no doubt have a long chinwag about the biases of doctors, or their sometimes obvious impatience with things that don't present like the textbooks. I'm thinking neuros at least know that almost nothing they see will be textbook and it makes them less impatient. Of course, the patient is often not quite so mellow about it!
Anyway, if one with MS can feel lucky, I'm feeling it right now...
Thank you all for the advice and information. The testing stages for anything is scary alone and my heart goes out to all of you. Sometimes I feel like the my doctors are just waiting to see if this progresses into more symptoms before making a judgment. I've had 3 doctors view my MRI and claim it is normal. I will seek further testing of my spine since that seems to be where the pain is.
I am sorry for your pain. I did not know when I was being diagnosed that you do not need a diagnosis to address symptoms. I was in pain needlessly. They have muscle relaxants for muscle spasms and other medicines for nerve pain. My MS Specialist sent me to a pain specialist. My first appointment was two hours. He asked me all kinds of questions and got to the source of my pain. I have MS but I also have three blown disks and migraines. The pain clinic also addressed my sleep issues. Now I sleep well. pain used to keep me awake.
I thought I would be diagnosed with whatever and then doctors would go about fixing my problems. I was diagnosed with MS and instead of seeing my doctor every three to six months it was pushed back to every 16 months to two years. There is very little my MS Specialist can do for me. My symptoms are now way over 40 years old. Pain is my worst. Now with the pain clinic it is under control. I see them once a month.
You are in a very anxious and frustrating place. Of all the things I have gone through being in Limbo not having a diagnosis was the hardest.
If it did turn out to be MS now that most people do not get every symptoms. I have had MS for 5O years. I have very little walking issues. I do have problems standing for longer periods of time. It all has to do with where you Central nervous system is attacked. Mine is the brain stem and I only have double vision and few other issues.Most of my issues are easy enough to live with. I used to think everyone with MS ended up in a wheel chair. ow days most people do not.
Alex
I thought I would be diagnosed with whatever and then doctors would go about fixing my problems. I was diagnosed with MS and instead of seeing my doctor every three to six months it was pushed back to every 16 months to two years. There is very little my MS Specialist can do for me. My symptoms are now way over 40 years old. Pain is my worst. Now with the pain clinic it is under control. I see them once a month.
You are in a very anxious and frustrating place. Of all the things I have gone through being in Limbo not having a diagnosis was the hardest.
If it did turn out to be MS now that most people do not get every symptoms. I have had MS for 5O years. I have very little walking issues. I do have problems standing for longer periods of time. It all has to do with where you Central nervous system is attacked. Mine is the brain stem and I only have double vision and few other issues.Most of my issues are easy enough to live with. I used to think everyone with MS ended up in a wheel chair. ow days most people do not.
Alex
I am so very thankful that you did have a speedy diagnosis, it has to be a little easier to live with when you know what you have instead of guessing at what it could be. As far as the ER doc I'm right there with you, the problem is I believe they are not as familiar with MS or what an MS attack looks like, twice I have had to go to ER and the 1st time they let me lay there without being able to feel my lower extremities for hours before a doctor even come in then about another hour before they decided to call the Neuro I was then seeing (THANK GOD not anymore) they gave me a run of soul-mederol and within minutes I was getting the feelings back into my legs then dis-charged within 30 minutes and asked if we wanted to pay our portion of the bill that night at a discounted rate?????? My husband laughed at them as we wheeled me out the door and said bill my insurance, the second time however we were out of town and the ER was much more educated and took a more professional approach to treatment. I have the best Neuro ever now and am on a regular schedule of IV infused Tysabri that so far has proven to show some improvement. I wish you all the best and hope that you have found a neuro you are happy with and that makes you feel comfortable. Ask all the questions you can think of there is a lot we are still learning everyday. Best Wishes to You!!!
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They often follow you every six months. They may do engs, evoked potential, or lumbar punctures. They go by the McDonald Criteria.It is complicated you can look it up better than I can explain it. I met the McDonald Criteria right away but it took me several neurologist two years to finally call it MS. Neurology time is slow. They do not like to take anyone else's word for it they want to see for themselves.
Alex