I’m scared and exhausted from fighting for answers — I need help and support
Hi everyone,
I’m posting here because I’m overwhelmed, scared, and honestly just so tired of being dismissed when I know something is seriously wrong. I’ve been trying to get answers for what I now believe is MS, and while my test results seem to confirm it, I still feel like I’m being ignored by my neurologist.
My symptoms started last year with terrifying episodes that felt similar to focal aware seizures. I was fully conscious and able to speak, but my entire body felt like it was convulsing or bouncing, and I couldn’t move or control anything. I went to the ER, but they sent me home with no answers.
Thankfully, my PCP took it seriously and ordered a brain MRI. It showed lesions, and she contacted me right away with concern for a demyelinating condition. A spine MRI followed, which showed additional findings that supported that concern. From there, she referred me to neurology.
They initially tried to schedule me months out, but my PCP pushed and got me an urgent appointment. Unfortunately, the neurologist I was assigned didn’t take me seriously. He dismissed the seizure-like episodes as something that “just happens sometimes,” and said my lesions didn’t show the typical MS pattern. Despite multiple abnormal findings, he wanted to send me on my way with no follow-up except another MRI in a year.
I’ve been complaining about symptoms that now clearly align with MS for years — including:
• Extreme fatigue
• Brain fog and memory problems
• Difficulty concentrating
• Back pain and numbness
• Tingling and stabbing nerve pain
• Cognitive issues so bad I thought I had ADHD
I even got evaluated for ADHD and was accused of “just wanting meds,” which was humiliating because I actually avoid taking medication.
Still, I trusted my gut and advocated hard to get a spinal tap. It was originally scheduled for December, then canceled, and I finally had it done in April. When I got my results, I immediately turned to ChatGPT to help interpret them — because they looked bad and I couldn’t get anyone to explain them.
Here’s what my CSF results showed:
• Positive oligoclonal bands
• Elevated IgG index
• Elevated kappa free light chains
Combined with my brain lesions (periventricular, parieto-occipital, and cerebellar) and a spinal cord lesion at C3–C4, everything points clearly to MS. Yet no one from neurology contacted me to discuss the results — even after two weeks. I work in healthcare and even abnormal bloodwork usually gets a call within 48 hours. I feel invisible.
I tried calling to make an appointment — no one answered. I requested one online and they scheduled me for December. I couldn’t believe it. I had to beg through the patient portal, explain my symptoms, and say I needed to be seen urgently. They finally got me in for next week.
I’m scared. I don’t want this to keep getting worse without proper care. I don’t want to be brushed off again. I just want to be taken seriously, and I want someone to help me before this disease takes more from me.
Has anyone else experienced something similar — where the clinical findings are there, but the doctor still wouldn’t acknowledge it or follow up? I feel so alone in this.
Thank you so much for reading
Oh, goodness,
! I am so sorry you are in this situation! Unfortunately, I think a number of our community members can relate to being dismissed by medical professionals. It sucks and I wish it didn't happen so often.
So, first off, it sounds like your PCP is on your side and is currently your best ally in your fight to get a diagnosis and treatment options. And, your PCP can help a lot. You may ask them if they can refer you to a different neurology practice and (again, unfortunately) you might end up having to travel a bit to get the level of care you need and deserve. It sounds like you are just going to get the run around with the neurologist you saw (and possibly that whole office). You deserve better.
I wanted to share an article on the topic of medical gaslighting because I want you to know you are not alone in this -- https://multiplesclerosis.net/living/gender-bias. It's sadly all too common. And, here's a blunt conversation from our forums on this topic -- https://multiplesclerosis.net/forums/raw-conversation-about-medical-gaslighting.
I know it's exhausting, but please keep advocating for yourself and keep using the resources at your disposal (your doctor, ai, the internet in general, sites like this, etc).
I would definitely talk to your PCP about what help he can offer you in getting a new referral or even how much care she is able to provide in regards to your MS. It sounds like getting care at the neurologist's office might not be in your best interest anyway.
Please know we're here for you and so many people here can relate to your experience (although your experience is especially troubling, in my opinion).
Don't hesitate to reach out if you have any more questions or concerns. We'll be happy to help in any way we can.
Hang in there!
Gentle Hugs, Erin, Team Member.Hi
,
Thank you so much for your incredibly kind and supportive message — it truly means a lot to me right now. Your words brought me a sense of comfort and validation during a time when I’ve felt completely dismissed and invisible in the healthcare system.Unfortunately, I recently got an email that my PCP — who has been my one real advocate in this process — is retiring. It’s heartbreaking, because it always seems like when I finally find a good doctor, they disappear. That said, I’m trying to stay focused on getting transferred into an MS clinic where I can hopefully find specialists who take this seriously and give me the support I need.
Right now, I feel stuck in limbo. I haven’t received a formal diagnosis yet, but based on my MRI and spinal tap results, I meet the McDonald criteria for MS. I’ve also been dealing with many MS-aligned symptoms for years. Ive been endlessly researching and it’s overwhelming to see everything pointing in the same direction, yet no direct answer.
I live in Massachusetts and go to Mass General ( ranked as one of the top hospitals in the country) so it’s pretty crazy I’m not getting proper care, also in the back of my head I’m thinking “is it because I didn’t want to participate in their research program?” I lack self confidence so I really need to learn to speak up for myself. I’m exhausted, scared, and just want to be taken seriously before this condition progresses further.
Thank you again for the links and for just seeing me. I’ll definitely keep reaching out — it helps more than you know.
With gratitude,
AmandaI saw your post and wanted to offer my support. I hope you are able to find some help and some answers.
Now I will give a little bit of what I've learned with working as a medical liaison in the past... typically the soon-to-be retired letters come about 3 months in advance. That said, sounds like you have an amazing PCP and they may be able to help you out. If I were in your shoes, I would request from your current PCP a recommendation to a new PCP in network that they recommend. Chances are that the recommendation will have similar attitudes toward what you are experiencing.
In addition to that, I would personally request a referral for a new neurological assessment. That will open up the appointments to all in network neurologists. If you have the option to message your PCP directly, maybe ask for their recommendation.
And there are the options of requesting full workups from the Mayo clinic, just might not be covered by your insurance if you have it.
Having worked through several doctors retiring as a medical liaison, it is my general experience that in their final months and weeks they tend to focus primarily on submitting their referrals and giving that guidance for ongoing care. I'm sorry you're losing your PCP, but they may still be able to help with direct knowledge of the doctors they can refer you to.
I'm sending my positive thoughts and hoping you can find a path forward without many obstacles. 💜💜, oh, goodness. I am so sorry to read about your PCP. It sucks when you feel like you just can't catch a break. And it stinks that you are apparently getting less-than-stellar care at one of the top rated hospitals in the country. It just shouldn't be so hard to get good care. 🙁
Keep up the fight. I know it's not easy, but keep it up. And,has some great advice, too.
Gentle Hugs, Erin, Team Member.
