My Story. 😊

[MusicKMC]

Has anyone else had problems finding a neurologist who believes in you? I began having serious symptoms in 2012 at the age of 53. Tingling and weakness of my legs. I was living in India at the time. While there, I was diagnosed with Hashimoto’s and low Vitamin D levels - which can both cause these symptoms. Upon return to the US in 2015, I began having more symptoms and my doctor became concerned about MS. My C-Spine MRI in 2017 AND 2018 stated I had demyelination which was highly suspicious of MS. Brain MRI was clear. The neurologist did not seem concerned, and I did not return to them until the end of 2021, after I had a few bad months with exacerbation of symptoms, including a vise like feeling on my legs which would wake me at night. This MRI said chronic demyelination in CSpine and the neuro-radiologist believes I have MS. The neurologist said they won’t call it MS with less than 3 visible lesions, and he will do no further testing, although the neuroradiologist wanted my to have the lumbar puncture. The neurologist also informed me that I would be surprised at how many people WANT MS. I was so shocked and disappointed. I’m just not sure what to do at this point. The neuroradiologist wants to send me to another neurologist - and I’m just tired of being treated like I’m crazy. My primary even told the neurologist that I am never sick, and he knows me well - believes that something is not right. Of course, the neurologist shrugged his shoulders when I asked what was causing the demyelination. 😢

[carolek572 CommunityAmbassador]

Sounds like what I went through BEFORE my diagnosis, MusicKMC ! The neurologist that I was seeing would not give me an MRI. It was my PCP who did. If you are in the Boston area, I would suggest that you go to the Partners Health Care at Brigham and Womens Hospital. They are the premier center for neurological issues in the world. Do not settle on a doctor that you are uncomfortable with. Your health is too important. Best of luck and let us know how your search is going. Keep Smiling, my friend

[NorasMom]

Find a different neuro. I went through several before finding the wonderful man who diagnosed me, and I let it drag out for too many years because I was accustomed to just listening to what the doctors said.

I have a real problem with the criteria used today, because I think it's incredibly faulty, so I have no patience with doctors who ignore what you tell them. See if the radiologist and your GP can work together to find you someone else. And if that person doesn't work, try again.

It's bad enough when the tests are negative; it's inexcusable when they won't even run them.

[hopeandgrace]

So sorry to hear about these experiences you have had. You deserve better. Agree with the other comments - find another neurologist. Hope that you can find some relief soon. Lifting up a prayer for you now. Hang in there! We're all here for you.

[MusicKMC]

Thank you all SO much! I wish I had been a part of this group much sooner. I feel so bad for people who can’t advocate for themselves or who have no one that believes in them. How terrible is that?! I believe that we KNOW our bodies - and we know when something is not right…

[goatgal]

Unfortunately, in my experience, it is rare to find a Primary Care doctor who listens thought- and open mindfully to the strange symptoms that MS can cause, let alone a neurologist! I'm pleased you are here among those who have learned to advocate for themselves. There is a wealth of experience here that is shared freely and we believe in one another.

[JSSimp]

My prayers are with you🙏🏾

[palomino27]

Easy solution. Thank you but next!

[Sandydemop]

I believe you, your primary and your neuro-radiologst. Later on you can report the other guy for malpractice.

[twooldcrows]

you need to find one that Specializes in MS ...sorry for the way they treated you for lots of us have had that kind of treatment ....the ones that are Specialists in it are great well i should say the one i have is and she doesn't treat me like it is in my head ...oh i for got to say that no one wants to have MS that doctor sounds like a kook ...sorry but that is just stupid...no one wants to get sick and have a disease...good luck and sure hope you can find one ...have you contacted the MS Society for help in finding one ....good luck and be happy and laugh and smile ...try not to stress to much ...

[MusicKMC]

I haven’t looked for anyone else yet. That doctor just kind of knocked the wind out of my sails. He never asked how often my relapses happen - or how long they last. He didn’t seem interested in my symptoms… And, after a tough 4 months, I was doing better. So, I laid low. But, the neuroradiologist really seems to like this other neurologist and wants me to see him. He will share his findings with him. I just don’t understand how a physician can say there is nothing wrong when you definitely have chronic demyelination - and all of the symptoms that go with it. 🙄 Anyway, in the meantime, I just walked/jogged a 5K, was Musical Director for 2 shows at the children’s theatre here, work 3 days a week and am generally enjoying life. As I explained to the neurologist, I’m not looking for pity - just affirmation and a support team for when I need them. Obviously, I don’t want him on my team! 😡 LOL! Thank you so much for the support!

[mrsmike9 in reply to MusicKMC]

Go to the neuro that the neuro-rad recommends. These people know who are good.

Best of luck.

[Marz91]

Sorry that happened to you! I would suggest finding a new Neurologist asap. Neurologist specialize in MS & other chronic illnesses. If this Neurologist & your PCP doesn't agree about you having chronic demyelination ; you can always get a 2nd opinion which doesn't hurt. I had 1 MRI & then had to do another 48 hours later. And my symptoms of loosing sensation in my legs/feet before I was diagnosed with MS last month

[Tazmanian]

Get a second opinion and make sure you see an ms specialist

[Jer29-11]

Definitely find someone else! Honestly, neurologists who do not specialize in MS don’t really know about MS (not to mention all the other doctors-primary, ER, etc). Find an MS specialist and I bet they’ll take you seriously and help. Do not settle for no answers especially when you’re having symptoms that are affecting your life. When I was first diagnosed and hospitalized for MS (confirmed on MRI) the neurologist I saw in the hospital had no clue about anything MS related and sent me home on oral steroids, which I found out wasn’t the best treatment. Should’ve been IV because of the severity of symptoms. I had to be readmitted to the hospital for IV steroids a week later. I was so mad! It’s unfortunate, but we have to advocate for ourselves. I work in healthcare and I can’t say it enough! Hope you get the answers and treatment you need ❤️

[BlanketTime1]

ah neurologists, who pretend they are gods.🤬 i'm so sorry he put you through that. i haven't read the replies yet so i might repeat what others say, but is there an ms centre anywhere near you? you're at the age when older people tend to be diagnosed (by older i don't mean old😀 i mean not in their 20's). and you have spinal lesions that have shown up and changed over time.

fire him, please. he's an idiot.

i hope the neuroradiologist can help you find a better neuro. it's really hard to find one who will listen. no one in their right mind wants ms. what i believe he was referring to is the relief people feel when finally diagnosed. most of us, especially women, are told we're crazy at some point. it's disheartening. worse, it's scary. your body isn't working and the one who is supposed to help you refuses. so he read it as them being happy to have ms when what they really feel is relief. what a tool.

don't give up. head to the next one with copies of your mri's and your fingers crossed. you're not alone. i've been in limboland for ages. hopefully you'll get your answers quickly.

[kycmary]

So Sorry you had that experience it does sound normal from what I hear, my eyes went off left one went out to the left side & up right one went out to the right & down. They still had to run all there tests & a lumbar puncture & said possibility by then it had resolved back to normal. If you have anymore problems come back & see me.

[ahrogers]

I hope his statement that people want MS really meant people want an answer to their symptoms and MS is an answer. Definitely would get another opinion and further testing. It might not be MS but whatever it is may have treatment available