So I waited several months to see a neurologist just to be told usually MS includes some type of major vision issues or pain..... I get that that is a common symptom, but so many things point to MS & I did have an episode of a vision change, but it only lasted a few days, besides the having difficulty keeping focus. I know I missed things, but he basically asked me questions & of course I forgot about some stuff. He said he doesn't think I have foot drop, he thinks my muscles are just tight in that ankle. This just leaves so many questions unanswered again & me just trying to figure out what next. He is going to do imaging, but obviously doesn't think it's MS, he wants me to follow-up with a different doctor that I think he says runs a neuropathy clinic...
I just want answers, I don't want MS, but it was really looking like it with so many issues that can be part of MS. I asked him what to do about the spasms, he said you're taking a muscle relaxer, that should help, well yeah sure if I want to sleep. My job is about to let me go as I have no return to work date & without anything concrete it seems they are going to deny my long-term disability claim & then in really going to be screwed. I've been waiting for this for so long hoping for some direction, now I'm just more lost than before.
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MyLifeMS
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Be thankful you don't have MS. But be patient with the diagnosis process. The MRI scans will shed much light whether you have MS or not. Be careful with your reading material; many symptoms can look like MS, even worse or different autoimmune disorders, like Lupus. You can always can get a second opinion about your symptoms. But be thankful you don't have MS or don't hope for anything terrible. You may have muscle spasms in your ankle or minor eye problem. Be patient and grateful that you don't have a diagnosis for MS.
I have a lot more issues then that, those were just the things he chose to address. I don't want MS, but it sure does seem like it. I've been screened for many things already. I need to see a specialist, who are all too crazy busy, regular doctors can't diagnose me with anything as it's out of their scope. I also just think it's crazy that these doctors even fill out their notes with things that were not discussed or asked at all.
No, you don't want it to be MS but you need answers quickly if this might cost you your job! Something is causing your symptoms! Glad Dr is scheduling the imaging, but I would schedule an appt for 2nd opinion right away as it can take so long to get in, preferably with an MS neurologist. Bring a list of symptoms and questions to all appts. Hope you get answers soon. My first neuro didn't think it was ms either, kind of brushed me off, eventually the scans proved him wrong.
I'm already going to lose my job as I have no answers or direction. He was an MS neurologist, but was supposed to do general as well. I waited since March to get in to someone. Everywhere was even longer, I can't wait another several months, I need some answers now. It's just so frustrating, this is not just nothing.
Are you getting both brain and cervical mri's? My first mri was for brain and showed no lesions. MS was confirmed on cervical mri, ordered by a different neuro/2nd opinion, which is where most of my lesions were. Don't give up until you get answers!
I am getting brain & thoracic spine with & without contrast. I already had one of the other areas not too long ago for other reasons, but my cervical is distorted as I have an artificial disc batten c5-c6.
If you have FMLA, Short Term Disability, and Long Term Disability through your employer, hire an attorney now. Do not wait until they terminate your employment.
I've exhausted my FMLA & STD. I am currently in the process of LTD evaluation, but they said there was no objective evidence to support leave...I have no money to hire an attorney & they will be terminating my employment as of the 14th without a return to work date in the near future, which I don't have.
if you live near a large city, you might try legal aid. i had an old student loan shark after me and before i got disability, i called them. the man harassed me for years (my dad already paid him, twice) and they got him off my back.
I know that feeling. My first symptom was optic neuritis, completely lost all vision in my left eye. My wife took me to the emergency room late that evening. We were both scared because neither one of us could come up with a reason for it happening. The hospital referred me to a local neurologist. He told me it was just a fluke. Luckily, this time the eye doctor was much smarter than the neurologist. She wrote me a referral letter to MSCA. I was diagnosed at my first appointment there, even before the MRI. The MRI just confirmed it.
If the neuro is not an MS specialist, he may be poorly informed. If there is a major university medical school nearby, you can self refer to their neurologists. Get a second opinion!
When I was diagnosed at one in my region, I did not have foot drop or vision problems. I had had an experience that frightened me: I leant over to latch a gate, fell forward, stood up, fell again because my legs would not support me. Though within hours I was back to usual, I thought I'd had a stroke so I called and made an appointment. At the hospital, they ran blood tests, did MRIs of my brain and spinal column, and did a lumbar puncture. I was diagnosed with MS within a few weeks though (at that time) I had no other symptoms.
I had over 30 years of knowing somethings wrong with me and nobody being able to figure it out telling me there was nothing wrong with me. Even when I got a bout of optic neuritis only then the doctors said maybe MS but probably not. Well after doing a brain MRI it definitely was MS that had been brewing in my body for a long time (as evidence was the ‘black holes’) further MRI revealed brainstem, cervical & thoracic lesions as well. MS presents differently for all of us and an MRI is a good first step. I would not jump to diagnosis based on a symptom or two because 1) they vary 2) with this disease symptoms are fleeting which is partially why many of us take so long to get an official diagnosis 3) there is no requirement of eye issues-yes it’s common but not everybody who has MS has them.Best wishes to you and I completely understand the frustration of wanting to know what is happening to your body. If anything hopefully you are able to rule out MS or unfortunately in. Either way answers should provide you with some comfort and ability to make further life plans.
also, i just remembered. the first thing that showed up for me was a thoracic lesion. so all those years with my inconclusive brain mri's, i was experiencing things that originated in my spine and after 6 years, i finally got a spinal mri. if you're having to fight anyway (especially if you have any symptoms that could originate in the spine), i'd try for a full back mri.
The brain scan will give clues. Many MDs refuse to order one if they doubt MS, so that’s lucky! The comment about muscle relaxer? I feel like he’s saying you are already on what you would be offered if it were caused by MS. I hope the neuropathy visit can help.
I'm in pain medication & muscle relaxers already, so when I asked about the numbness & spasms, main thing causing me issues to work, because that's where my thoughts went knowing they are waiting for something, all he said was that the muscle relaxers should help with the spasms. I don't want meds just thrown at me, I hate taking stuff, & I want to know what is causing all the issues, but just take a need to stop it, which I can't really down myself in muscle relaxers unless I want to just sleep my life away.
When I first went to the neurologist he said I didn't have MS because my symptoms really didn't fit. He did agree to running a head MRI. That was filled with lessions. He still didn't think it was MS. He then ran a Cervical spine MRI which was filled with lessions. Still not thinking it was MS he ordered a spinal tap which confirmed it was MS.He was the top nuerologist in the city and had been the head doctor of the MS association for a year.
He still wouldn't acknowledge he was wrong he referred me to another doctor in the practice.
I have seen in here many times in the last few months that you're in charge of your health care. If the nuerologist hasn't ordered an MRI call him back to get one scheduled to rule out the MS as a diagnosis or to find out if it is MS so you can be put on a DMT and get the proper care.
I hope things work out for the best for you but you stay strong with your Doctor's.
Thank you! That's all I want, figuring this out to know what to do. I've had times where I was afraid I would wake up & not be able to walk, because at times it feels that's where I'm heading. My brain is not working well, I can't remember things, I can't think of the words to say, but I try to act like nothing is wrong as much as I can as I am used to dealing with the pain.
yeah, neuros as a rule suck! they seem to have god complexes, the lot of them. i had a dr. convinced i had nmo. the tests kept coming back negative, but i was worsening (not nmo worsening, but a steady progression). i finally got fed up and when i asked him some questions, he said it was in my head and i needed a shrink🤬. i saw a shrink, b/c i'm desperate for answers. she told me it wasn't in my head. i was in the office when she told him over the phone😀.
MyLifeMS, it sounds like you need another neurologist. Not everyone has a vision problem. I didn't. And it is difficult to diagnosis. A definitive (and pricey) test for MS is a lumbar puncture. See if you can get one. It will tell them, once and for all, if you have MS.
Your neuro sounds like mine - a half-wit. I have learned more from YouTube watching Dr. Aaron Boster's videos than I will 'ever' learn from my rural neuro. But to see an MS specialist would require traveling about 225 miles one way to see her. If you have access to another neuro, I would change doctors.
Talk to your employer face to face. Tell them what is happening. If they "see" that you are not faking, if they "see" that you are barely walking, it may help your cause. You are correct - long term disability is usually declined the first 1-2 times you file. (in the US anyway. Could be different elsewhere). I am fortunate to have a desk job, and they held my job while I was out.
This is scary stuff. We have all been there. In fact, a year ago today is when I first noticed a walking problem. There was LOTS and LOTS of crying through the holiday season last year. Season of joy - yeah, right! It took about 7 weeks to get a diagnosis. But there is medication available for MS that was not out there 15 years ago. Be strong and keep your faith! I am just now understanding the meaning of true "resilience."
Another tip - download a notepad app to your phone. When you think of a question, or a symptom you want to mention to your doctor, put it in your phone. Then whip out your phone and open that app when you see him/her.
And if your less-than-stellar neuro wants to start you on the weakest of the disease-modifying-therapies, (DMT), tell him/her you want the STRONGEST. Dr. Boster recommends that.
Best wishes. Keep us posted. I do not get to post much, because of my job. But I just had to comment here. Prayers for you being lifted!
Well, my job is at home at a computer, which is all I could possibly do, but with the partial numbness, tingling, & spasms in my hand I can't do my job, plus the pain has gotten worse, legs feeling like they need to move or wiggle or something, knee pain, & now my brain just doesn't seem to be working. I can't really do my job with my brain not working properly, it is something needed to perform my work. The long term disability is through my job, not SSD, but they want objective which is difficult with my issues. How do I prove my brain isn't working or my knee is hurting, my tingling & spasms in hand, or my legs going nuts? I don't know & I thought the neuro would help.
I had this appointment since March, smh, can't get in with nobody, he is supposed to be MS specialist, but just seemed to want to pass me off to someone else. I don't really care who it is or what it is, I just need help figuring it out. Stuff isn't right, something is going on & sometimes it's worse, sometimes it's not as bad, but I can't get much done like that. Just writing this, both my hands are lightly tingly & I can't do it much longer. It's like certain positions, one being ergonomically correct, causes it, because it's the worst when I try to sit down at the computer like I would at work. If I don't sit properly then it creates other issues, more pain than I already have.
Hi, MyLifeMS I'm really late to this conversation as I haven't been on the site for ages. I hope you've been able to find answers to your physical symptoms. For your cognitive symptoms, though, has anyone mentioned neuropsychological testing? Cognitive issues were my most noticeable symptom (memory, organization, word finding, problem solving). The testing is very thorough (about 8 hours over two days, for me; plus a detailed interview with the neuropsychologist) and will show what strengths and deficits you have. It won't provide an MS diagnosis but it's good to have as a baseline and when you do finally get a diagnosis, whatever it might be, having neuropsych documentation could be very helpful. Best of luck with everything!
Falling...a lot! Down stairs, through tables... What finally got me checked out was when I was riding a bike and my legs refused to move completely. Broke my upper arm on 4 places.
I don't have any vision issues, a couple years ago I woke up with a weird hazy vision &couldn't really see to the sides, it didn't last but maybe a couple days. Besides this only some difficulty with staying focused. My other issues are not vision related.
limboland is hell. i've been here FOREVER, lol, not really. it just feels like it. here's the issue. every neuro i've seen (all 5) believed i had something different. but you know what they keep returning to? 'boy, this sure looks like ms.' and i want to yell, 'if it walks like a duck and quacks like a duck.... treat me, already!' b/c as they speculate, i worsen.
were you ever given the official ms diagnosis? b/c if you were, i'd look for an ms specialist first. oh, here's something i learned from my pain dr, ms lesions in the spinal cord can look like a pinched nerve or stenosis on the mri.
what fun. in fact, spinal lesions are tricky in that they don't always show up on the mri, but the symptoms are there anyway. i asked him if he could help me with my lightning strike pain, he pulled up my mri, told me about my problematic c4-c5 and said, 'did they ever diagnose your ms?'
why? sorry, a bit of a rant, but before you go gung-ho for a dr and their opinions, make sure they know what they're talking about. i saw one neuro who insisted ms never causes pain (he learned that decades ago in med school when they still believed that) and kept offering me vitamins... smh
the problem i have with what your doctor said is that ms isn't the same for anyone. ever. it can affect pretty much the whole body. also, a relapse lasts more than 24 hours, so that few days of eye issues... qualifies.
i'm super skeptical of doctors, but i'd check his credentials and if you don't trust it, get a 2nd opinion.
It's just so frustrating. So this Dr is an MS specialist, he is ordering a brain MRI & Thoracic as I've recently had a cervical & lumbar due to just follow-up from accident, surgery, chronic pain, etc. Problem is that can't even see well on my cervical since I have an artificial disc. I've not ever seen lesions listed on any MRIs previously. I did have a brain MRI several years ago due to hearing my heartbeat on my ear, I'm not sure if they look at my whole brain or not or if they even would like for lesions. But if there is anything there, hopefully if I can remember where I went & get a copy of my previous one, it will prove changes. I've not been diagnosed, but it sure does come up a lot. He did write diagnosis, whatever is used for MS, on my orders, so at least he is advising to check, right? He also ordered some bloodwork & told me to see an ophthalmologist, which I made an appointment for that. Then he didn't want to follow-up with me, since you know I don't have MS, even though they said he did general neurology as well, he said to go to the NP that has a neuropathy clinic to follow-up. The problem is, all this stuff takes so much time & my employer is done waiting on me, I've exhausted all leaves. And I probably won't have any answers before the long-term disability from my job is decided either. What do people do?!Funny thing, my sister is experiencing some things as well & MS has come up, she seems to be getting things done faster, but she also has crazy dizziness/vertigo, so I'm glad as I can't imagine living with that.
One thing I don't get, how the heck do these doctors think gently pushing/pulling on your arms or legs would show weakness??
I do have schmorl's nodes on my lumbar spine, but don't know if they could be lesions or not. It's always up to the providers how they put things or don't & we're just stuck in the middle.
the small room isn't an issue for me, but then my ataxic gait is so pronounced it takes them half a second to monitor, lol.
about the contrast: on the ataxia threads, someone posted about this. they give it to us, who they know have neurological issues and it's a neurotoxin. they said when they first offered contrast, the dr recommended to stay far away from it, but months later changed his tune (echoes of opiates and doctors, anyone?). unfortunately, we have to do what we have to do to get a diagnosis and hope the contrast doesn't make things worse.
i think the big thing is to not give up. also, it's good they're looking at your whole spine.
Should there be lesions everywhere though I wonder if it's it normal for people to only have them in one or the other areas? Spine vs brain. Yeah, the problem with that, which I avoid toxins as much as possible, but having mthfr, my body doesn't rid the toxins like other people, so it can effect me even more. But yeah, it's sad, we have to do what we have to do to get answers.
i think someone else mentioned this, but there is no 'normal' when it comes to ms. everyone's is different, literally. i think most people have brain lesions, but that doesn't make it 'normal.' i had a dr who was primarily a researcher (and i could tell. even for a neuro, his bedside manner was abysmal😀). he believed what's known as multiple sclerosis is actually a few different diseases lumped together.
which is interesting. i personally had symptoms indicating spinal lesions long before my brain mri raised any red flags. so when i got the spinal mri results, it made sense and i felt vindicated like, 'i told all of you; listen to me!'
i didn't know about the MTHFR mutation; i think you should check with your doctor about that, not the neuro, but whoever you see for it.
Unfortunately, my original doctor who tested me for the gene mutation I no longer see, she now does a co-op thing, no longer takes insurance, & was kind of changing directions with her focus. Not many doctors, especially specialists are going to care about it, even though it effects me a great deal in how my body detoxes or doesn't.
yeah, when i looked it up i saw some drs pretend it isn't real. do you know what it reminds me of? some doctors didn't believe untreated coeliac could have the wide-spread effects it has on the body. now they know better. unfortunately with scientific minds, everything has to be proven to them and meanwhile you're suffering.🤗
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