Just got off of a call with my neuro’s office. I had a follow up appointment scheduled for tomorrow, but now it’s been rescheduled to next February. He had sent in some orders for lab work and an EMG to help narrow down possible causes for me. At first, the orders got canceled in his office’s system, and never made it to my local hospital’s scheduling department. I then coordinated with his office and my local hospital to get the orders resent to the correct locations. Cue another few days of waiting, followed by the same situation two more times. When I finally got my EMG scheduled, the earliest appointment time they had was at the end of January. I still have no idea if the lab orders were received, so I’ll have to figure that out during my lunch break today.
I’m so tired. I know that I should be grateful that my imaging has been clear so far, but I’m honestly more scared because of this. My spinal tap was positive, MS-like symptoms are present, but no lesions have been seen yet. I try not to think about having PPMS, but my mind brings me back to stories of others with PPMS who struggled with having persistent symptoms and normal looking imaging for years before diagnosis. I keep waiting for an attack or relapse, but nothing happens. My symptoms do fluctuate and vary day by day, but I’m having a difficult time figuring out if my symptoms have improved or not. I’m 10 months into this now, and that one year mark keeps getting closer and closer. I wish statistics were on my side, but it doesn’t seem like it.
Has anyone else’s MS journey started like this? I know this disease varies from person to person, but I’ve been struggling with some intense feelings of loneliness surrounding my experience. It seems that most people my age had pretty textbook presentations of RRMS. I’d love to hear if anyone else has gone through anything similar to me while in limboland.
I also feel like a fraud in some ways, because I’m still not sure if I have MS or not. Unfortunately from the research I’ve done, and the current test results I have, MS seems to be the most likely culprit. I’m trying to keep a stiff upper lip, it’s just hard right now.
If you’ve read this far, thank you for caring enough to do so. I’ll be okay, I just need to figure out how to keep going when things feel hopeless. I also just realized that they have animal emojis on here! Here’s a penguin because they’re my favorite. 
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Hi there. My case is one of what you might call a classic initial diagnosis: optic neuritis and an MRI that showed ‘quite a few ‘ lesions in my brain.
Just out of interest: according to the UK MS Society, diagnosis of PPMS requires at least two lesions in the brain or spinal cord plus progression over a year. Is it different in the States ( and come to that, do different States use different criteria)
Hi @Hank_Dogs
I believe here in the States most doctors follow the current McDonald criteria when diagnosing MS. According to the current criteria, a diagnosis of PPMS requires worsening of symptoms over the course of a year, and two of the following: lesions that show dissemination in space in your brain, lesions that show dissemination in space in your spinal cord, oligoclonal bands on a test of your spinal fluid. Since my spinal tap was already positive, and I’m coming up on one year since my symptoms started, I’ve been getting very nervous about it.
Of course, I say most because the first neuro I saw jumped straight to “I think it’s most likely MS.” based on the results from my spinal tap alone. He was even trying to start me on Kesimpta, but at the time I was worried about the possibility of not having MS and using the drugs meant to treat it. He’s based out of a smaller city (around 120,000 people) but has over 30 years of experience. I’ve been battling with myself wondering if he was right after all.
I just had some lab work taken for testing on some other potential causes of my spinal tap results (like HIV, encephalitis, Lyme disease, syphilis, etc.). If any of the results are positive, it’ll hopefully be a step in the right direction. If they’re all negative, then I guess that’ll also be a step in the right direction.
I hope for you that someone gets to identify the cause of your symptoms.
This is just pure idle speculation on my part but would I be correct in thinking that MRI scans haven’t revealed any lesions in which case you are very unlikely to be given a diagnosis of PPMS ( you would meet only one of the criteria from the list of three criteria in addition to symptoms worsening over a year)?
Hi Hank!
You would be correct in thinking that. Without lesions, I’ll technically never get an official diagnosis of MS. I know that I should be hopeful for my clear imaging, but life has always found the cruelest ways to crush any hope I have. Usually, if I hope for one outcome, the exact opposite seems to happen. Because of this, I can’t bring myself to hope very much anymore.
I’ve also read one too many stories of people with PPMS, who struggled with symptoms and had clear MRIs for years before finally receiving a diagnosis. I’ve also learned that PPMS lesions usually don’t have as much active inflammation as RRMS, so normal MRIs with contrast may not catch things as quickly as someone with active lesions.
I wish I could talk to someone who had answers. My first neuro said it’s likely MS, my second neuro said he doesn’t think so. If my spinal tap was negative, I would probably tell myself I’m overthinking things. It’s not though, and some days I’m so scared that no one will find the answers I need until it’s too late to do anything about it.
I think more than anything though, I’m afraid that I’ll be left to suffer through this alone. I’m sorry I’m not more positive right now. This week has not been great physically, and I hate knowing how something I could do so easily a year ago (watering plants) now leaves me struggling and in pain.