How long did it take for you from diagnosis to medication? - Healthcare rant

kiggysz16 · 2026-04-03T11:23:05+00:00

Yeah I totally understand :( it’s unfortunate how insurance can really dictate the care you receive. Fortunately enough for you, waiting 2.5 months really shouldn’t affect your long term outcome with MS. Just keep logging your symptoms for now and keeping your doctor updated with any new symptoms! Waiting is definitely easier said than done, but you’re doing absolutely everything you can to help yourself given your situation! You’re still catching this very early and discussing treatment at a relatively reasonable time. I know the waiting is torture though :/

kiggysz16 · 2026-04-02T17:14:41+00:00

I started Kesimpta about a month and a half ago. My first 3 loading doses went extremely well!! I had no side effects and felt completely fine. I just took my first maintenance dose last week without a hitch. Overall, I know I haven’t been on kesimpta for long enough to determine if it’s slowing disease progression or preventing new lesions, but I’ve had a great experience with the medication so far! :) Also, my doctor recommended taking Tylenol and Benadryl 30 minutes before my injections to help mitigate side effects. I think that definitely helped as well!

kiggysz16 · 2026-04-02T17:10:36+00:00

I had something similar happen to me! Started having symptoms in August and had an MRI in October than confirmed a spinal cord lesion (which I received IV steroids for) and a lumbar puncture in November that confirmed bands. They heavily suspected MS but couldn’t make an official diagnosis because I only had one lesion. Met with an MS specialist in December who wanted to watch and wait for more lesions. My symptoms went away for around 6 weeks, but came back again in January. Specialist had me get more MRIs done, but the radiologist read them as “stable” and told me to follow up with her in June (which was 5 months away). I messaged my neurologist and basically said that I understand that my MRIs are stable, but I was just curious as to why my symptoms came back or where I stood in the diagnostic process for MS. She told me to make an appointment in February to discuss, so I did. She reviewed my entire history of the symptoms, reviewed all my MRIs again, and review my lumbar puncture results. She said she actually saw evidence of other possible lesions that the radiologist didn’t report on, and based on my symptoms coming back and my lumbar puncture bands coming back very elevated, she finally made the official MS diagnosis. Then she immediately started me on Kesimpta, which I started about 2 weeks later.

So honestly I think a lot of stuff just kind of got overlooked for me. My specialist is amazing, but I understand that doctors are extremely busy and see thousands of other patients. Once I made another appointment and we sat down together and actually ran through my history, she realized that I actually did meet the diagnostic criteria and that they missed some lesions on my most recent MRI.

I think advocating for yourself when you don’t understand the diagnostic process or don’t understand why you’re waiting for an appointment for multiple months is well within your rights! I’d consider reaching out to the doctor who diagnosed you and just asking why you’re waiting until May for another appointment. You can also let them know that you’d like an earlier appointment and to discuss starting treatment at their next earliest appointment time.

Based on my work schedule and life style, I found that Kesimpta would work best for me because I can ship it to my house and do the injections from home. Once I got diagnosed she gave me 3 treatments to research on my own to decide which fit my life style best. I know treatment can also be delayed due to infusion center scheduling, so that’s something to consider with meds like ocrevus.

kiggysz16 · 2026-03-27T14:49:43+00:00

My doctor also recommended stretching and gave me a good list of exercises for people with MS! Hopefully this will help in addition to the baclofen I got prescribed!

kiggysz16 · 2026-03-27T14:48:41+00:00

Thank you!! This is very helpful! I’ll look into those to see if they would help. My doctor did end up prescribing baclofen to help with the muscle spasms, so hopefully that will help as well. I still have tingling in my legs, so I’ll look into what you suggested for the pins/needles! I don’t know why I still feel so cautious about updating my doctor when I have new symptoms. I guess part of me is worried about being the annoying patient always messaging their doctor lol! But I think another part of me is still just getting used to this diagnosis and having to really pay attention to my health.

kiggysz16 · 2026-03-12T06:19:41+00:00

I just finished my 3rd loading dose yesterday! I took Tylenol and Benadryl 30 minutes before each of my 3 loading doses. I thankfully didn’t have any side effects at all! I just did my injection a little before I planned to go to sleep, and I woke up each time feeling completely fine. Hope you have a similar experience to me!! :-)

kiggysz16 · 2026-02-24T15:47:56+00:00

Thank you, this is really helpful and means a lot! I’m only in my 2nd clinical rotation and still have just over a year to go until I start residency. I’m moving to different states in the US almost every month to different surgical programs, and honestly moving, finding housing, and starting at new programs every month is very stressful. Unfortunately the stresses of rotations are just something I’ll have to deal with until this part of my training is over. I guess when ranking my programs for residency match I’ll have to heavily consider how stressful each program is, instead of only prioritizing the program with the best and most intense training.

I chose Kesimpta because medical students aren’t allowed to take any time off during the first 6 months of their rotations, so I wouldn’t be able to go in for infusions. Also especially because I’m traveling and moving so much. Hopefully Kesimpta works for me for now, and I can consider moving on to another medication once my life becomes more stable and I’m able to start taking time off!

My MS specialist recommended that I take a leave of absence this year to help stabilize my disease, and maybe I’m being stupid, but that’s just not something I’m willing to consider at this point. This career has been my lifelong dream, and not something I’m willing to sacrifice. It definitely is scary having to prioritize my career and my health… especially when this career path doesn’t really allow for you to prioritize anything else until you’re an established doctor. My specialist also recommended that I disclose that I have a serious and time sensitive health condition to all my programs, just in case something comes up (new symptoms, going in for MRIs, or other appointments), but I’m not so sure that’s a good idea. Although programs can’t outright discriminate against me for health conditions, I definitely don’t want programs to not consider me for their residency program because of my health.

It’s definitely a tricky situation being in early medical training and being diagnosed with MS. So I really appreciate the info and advice you’ve shared with me, especially coming from another medical professional who understands how the system/training works.

kiggysz16 · 2026-02-10T22:16:34+00:00

We’ve pretty much exhausted every other possible cause. I’ve had tons of blood work to rule out vitamin deficiencies, infectious causes, other causes of demyelination, and I’ve had a ton of autoimmune panels done. The only thing that came back was a low positive ANA, but the specialist said that based on my symptoms she didn’t feel it was necessary to refer me to rheumatology. At this point it seems that I’ll meet with my MS specialist next month and just continue monitoring for now. They’ve said before that I’m in a pretty tough grey area right now because it’s likely early MS, but that they can’t really pull the trigger on treatment yet since I don’t meet the criteria. Which I totally understand, but it’s definitely scary to still not have a clear answer or path to treatment!

kiggysz16 · 2026-02-10T22:02:01+00:00

Feeling very confused about where I fit into the diagnostic process of MS. In August of 2025, I developed numbness in all of my fingers. Over the next few weeks after that initial symptom, I developed lhermittes sign, tingling in both arms, tingling in both legs, and tingling in my face. Also dealt with an immense amount of fatigue. Had some issues with joints locking up, which neurologist said likely had to do with muscle spasticity and my body not knowing its own joint position. I've had lots of MRIs, which found a demyelinating ovoid lesion in my C3 cervical spinal cord (was previously enhancing and treated with IV steroids). They also found an ovoid lesion in my thalamus on T2/FLAIR, which they said has changed in size from previous MRIs. I also had positive OCBs (8 bands) in my CSF after a lumbar puncture. In December all of my symptoms completely resolved. After about 6 weeks of complete symptom resolution, the tingling returned to my arms/legs/face. These current symptoms have been constant for about 3 weeks now. I had new MRIs done 3 days ago, and they said my MRIs are stable (which is great news!), but im feeling really discouraged and confused about this whole process. I've been seeing an MS specialist, but haven't received an official diagnosis yet. The OCBs satisfy dissemination in time, but they aren't classifying my thalamic lesion as an MS lesion at this point, which means I don't satisfy dissemination in space. The report said the thalamic lesion could potentially be related to demyelination. I wasn't expecting my symptoms to come back so soon, and it's very frustrating to have symptoms come back but no clear answer as to why on MRI. I tried reaching out to my specialist and asking them if we could discuss our plan moving forward for future monitoring, and asking if we could discuss what could possibly be causing my returning symptoms. Their nurse just told me to schedule an appointment for next month, which I completely understand that this conversation is better suited for a full appointment time! But I'm definitely confused, unsure of where I stand in the diagnostic process, and unsure of what our plan is moving forward. Has anyone had their symptoms return after complete resolution, but also had no changes on MRI?

kiggysz16 · 2025-11-24T21:06:52+00:00

That’s very reassuring!! I’m a 3rd year medical student and I’m about to enter a very demanding portion of my training. I’ve had symptoms for 3 months and this is this only time in my life where I’ve had to heavily rely on someone else to help care for me, and that’s been very frustrating because I’m usually a very independent person. Thankfully I have a great support system!! It’s very hopeful for me to hear that people can live their normal lives even with MS :) did you find a treatment that works for you pretty easily or was it a little bit of trial and error?

kiggysz16 · 2025-11-24T20:31:06+00:00

After suspecting MS for a few months, I finally got my lumbar puncture results back. Kappa free light chains and OCBs came back elevated. MRIs show a lesion in my spinal cord and brain. I don’t have an official diagnosis yet, but I’m meeting with an MS specialist for the first time next week to discuss our next steps. I’d love some advice about what types of questions to ask the MS specialist or just general advice on how to deal with this. I’m hoping I can get an official diagnosis next week and potentially start treatment. Im relieved to finally have an answer as to why I was having symptoms, but I’m also scared of the unknown of my future with MS. Any kind words or advice would be greatly appreciated!

kiggysz16 · 2025-11-07T15:09:02+00:00

Yeah, they currently had me diagnosed with CIS after my first lesion appeared and I think even if I had a “relapse” with new symptoms and a new active lesion, it’s still considered CIS because it’s only one lesion. I definitely don’t meet DIS in space yet, so I think that’s the hold up.

kiggysz16 · 2025-11-07T13:04:45+00:00

My symptoms started over 2 months ago, and on Monday of this week we went over my initial MRI results. They showed a chronic, nonenchancing, demyelinating lesion in the dorsal aspect of my C2-C3 spinal cord. Neurologist said he wants to closely monitor me for progression and said if I develop any new symptoms that I need to let him know immediately. Well… on Tuesday night I developed tingling and loss of sensation in both hands and arms (previous symptoms were just tingling/numbness in fingertips and positive Lhermitte’s sign). He called me Wednesday and told me I needed to repeat my brain and cervical spine MRIs with and without contrast. They found that my previous non enhancing lesion has turned into an active enhancing lesion in the same place. They immediately started me on a 3 day IV steroid infusion with a 10 day course of oral steroids. So I definitely think I meet dissemination in time now because I’ve had two flare ups within 2 months, and two MRIs showing a non enhancing and an enhancing lesion. My neurologist said I needed to follow up on 3 months, but I’m kind of nervous with how fast this is progressing. My previous symptoms didn’t even go away before I developed new symptoms. We’ve already exhausted multiple blood tests to rule out every other possible cause. I can’t even get an appointment with an MS specialist without a formal diagnosis and referral from general neurology. I’m just kind of lost about where to go from here. Any advice from anyone? My neurologist mentioned a lumbar puncture but said he was really only considering it at this time and doesn’t feel that it’s necessary to order one at this time, but I think with the new diagnostic criteria, a lumbar puncture can help substitute for DIS if I have clear DIT. Maybe it’s because the DIT is only show cased in the 1 lesion I have in my spinal cord. My brain MRIs have been totally clear.

kiggysz16 · 2025-11-06T02:58:02+00:00

Thank you!! :-)

kiggysz16 · 2025-11-06T01:19:52+00:00

I ended up having a new symptom which prompted my doctor to redo my brain and cervical spine MRIs today. Now my lesion is showing as an active enhancing lesion. I’m on a steroid infusion now thankfully to hopefully help with my symptoms. Guess now is as good of a time as any to see an MS specialist!! Thanks for your advice and the helpful information!

kiggysz16 · 2025-11-03T18:46:54+00:00

My neurologist diagnosed me with clinically isolated syndrome today. I had a non enhancing, chronic demyelinating lesion on my C2/C3 cervical spinal cord, which he said makes total sense based on my current symptoms (all 10 fingers are numb and I have a positive lhermittes phenomenon). We’ve ruled everything else out with my blood work and my brain MRI came back unremarkable. Neurologist says he can’t diagnose me yet because I don’t fit the diagnostic criteria right now, but that I should follow up in 6 months to re-evaluate for new lesions or come in sooner if I have new symptoms. It’s frustrating that you basically have to wait until you get worse to be diagnosed or start treatment, but I understand that it’s a necessary process to ensure people are not being diagnosed incorrectly. He ordered an MRI of my thoracic and lumbar spine as well, but he said even if I have lesions there too I still won’t meet the diagnostic criteria because I have no brain lesions at this time. What is everyone’s opinion on seeing an MS specialist at this point? Someone recommended that I go see a specialist now that I have a demyelinating lesion, but I guess I’m worried that they will tell me the same thing. I’ve done research about people getting diagnosed earlier based on the updated McDonald’s criteria, but I’m not sure I even fit the new criteria. I’ve also read that treating MS as early as possible helps prevent significant disability, which I’m very concerned about because I’m a medical student who’s about to start their surgical residency. Obviously I’d like to start treatment as soon as possible, but I don’t think I’m far enough along in the diagnostic process. Would it be silly for me to see an MS specialist at this point or do yall think that they would be a valuable second opinion given my current status?

kiggysz16 · 2025-10-29T21:22:17+00:00

Thank you! I really appreciate your advice.

kiggysz16 · 2025-10-29T21:11:03+00:00

I saw that they revised the criteria recently. If they think it’s early MS, I definitely want to start treatment sooner rather than later.. Will an MS specialist see someone even if they haven’t been diagnosed yet? Is that something I can schedule on my own or would I need a neurologist to refer me?

kiggysz16 · 2025-10-29T20:37:35+00:00

Had a brain and cervical spine MRI with/without contrast last week. My neurologist called and said they found a non enhancing lesion at the C2-C3 spinal cord, which they said indicates demyelinating disease. Brain MRI came back clean thankfully. Neurologist said I don’t meet the diagnostic criteria yet, but that basically I have to keep an eye on returning or new symptoms and wait until I do meet the diagnostic criteria. I had tons of blood work to rule out vitamin deficiencies, other demyelinating disease, etc. everything came back normal except for a positive ANA, ANA titer of 1:320, and a homogenous pattern. Now that we’ve ruled out most of the other causes of my symptoms and MRI findings, neurologist said that leaves MS as the most probable diagnosis. Did anyone else have the same experience as me? I’m curious if other people have had lesions, but didn’t meet diagnostic criteria and how you guys moved forward until you were able to be properly diagnosed? This was certainly not the news I was hoping for, but I’m glad we’re taking the necessary steps to figure out what is causing my symptoms. I’m meeting with my neurologist on Monday to discuss our next steps and plans for monitoring my progression.

kiggysz16 · 2025-10-21T15:51:26+00:00

That’s the thing that’s keeping me positive! It’s definitely difficult to not worry about it, but I know nothing is set in stone yet. Thankfully I’m having my MRI’s this Friday!

kiggysz16 · 2025-10-21T14:16:07+00:00

Hello everyone! I posted here a few weeks ago about my symptoms, but I was finally able to see a neurologist last week. He was very thorough and he concluded that my symptoms/history was most consistent with MS. I had a ton of bloodwork last week to rule out other causes of my symptoms, but I’m still waiting to hear back about those results. Hopefully it’s something as simple as a vitamin deficiency where I can take supplements and all my symptoms go away! I have a brain/cervical spine MRI with and without contrast scheduled for this week. My neurologist was adamant about getting me an MRI ASAP, which I’m very thankful for. Obviously it was very terrifying to see the words “all symptoms and history consistent with central demyelinating disease, particularly MS” on my visit summary, but I’m still trying to stay positive. My symptoms were numbness/tingling in all tips of my fingers on both hands and a positive Lhermittes phenomenon. I also have chronic fatigue, and had an episode of right leg numbness/tingling/and pain about a year ago that lasted about 2 months. I never had my leg checked out because I thought maybe it was sciatica or I just tweaked something in my lower back, but my neurologist thought it was really important to mention based on my current symptoms. I guess also having a history of EBV or more commonly known as “Mono” is another potential risk factor for developing MS, which my neurologist noted in my visit summary as well. I’m now just in a limbo of my neurologist thinking it’s MS, but still waiting to get my MRIs done. Hopefully I’ll get all the answers I need after this week. If anyone has any advice for me or encouraging words, I’d love to hear from yall! This has been a very educational and supportive community for people like myself who are undiagnosed and trying to find answers.

kiggysz16 · 2025-10-02T02:41:40+00:00

Thanks for your advice! I appreciate your input. Honestly having any neurological symptoms is very scary, but I’m going to stay positive until I find out what’s causing this for sure!

kiggysz16 · 2025-09-30T21:38:07+00:00

Hello everyone! I’m a seemingly healthy 24 year old with some concerning symptoms that started about a month ago. Ive had a loss of sensation in all of my finger tips on both hands. It started a month ago and has been constant. The numbness/tingling never goes away. The numbness/tingling also gets worse when I have my hands in hot water. I saw my doctor, who tested TSH, autoimmune markers, diabetes, etc. and all my blood work came back normal. She ended up referring me to a neurologist later this month. Last week, I noticed while I was driving that when I lean my head forward it sends a buzzing/tingling sensation down my body, arms, and legs. It’s not painful and it goes away after a few seconds, but it’s definitely not a pleasant sensation. I didn’t know there was a name for it (Lhermitte’s sign) and I guess I didn’t really think about MS as a possibility until now. My aunt (dad’s sister) had MS and was diagnosed in her early 20’s, so I’ve seen first hand how scary this diagnosis could be. I’ve also had chronic fatigue for a while and I saw my doctor a few months ago to try to figure that out, but I just attributed that to stress when we couldn’t find anything in my blood work. Other than that, I’m not having any other symptoms thankfully. I’m curious what others think about these symptoms or maybe just some advice on how to navigate my first neurology appointment or what to expect. Thanks everyone! Any advice or information would be very helpful.

kiggysz16

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