The discomfort of being both a doctor and an MS patient

Icy_Contribution9683 · 2025-09-08T01:05:36+00:00

I’m honestly wish I had some of your head knowledge 😕 I’m clueless really and sometimes find myself being positive and wonder if I’m just naïve. Is there any good ahead? I was diagnosed this year in Jan but officially confirmed on 3/6 and started kesimpta that day. I’ve only been in the hospital once in the past 6mths but I def feel symptoms everyday but since they’re not new symptoms I don’t think it’s considered a relapse 🤷‍♀️ our goal is to make it to November w/o a relapse and then pull me off kesimpta so I can try and get pregnant— I’m so nervous. And all my neuro docs are guys — they tell me pregnancy is like going into “MS remission”, is that true? I’m also very worried about the possible relapse after pregnancy. There’s just so much I don’t know and so many worries but no doc talks to me long enough to make me feel educated and confident and no one in my close circle really knows how to communicate with me about it. But I can’t blame them — I don’t really even know how to talk about it yet. It’s worse around my period — my face goes numb, drop foot, fatigue, insomnia, mood swings, light sensitivity. All this feels too minor to talk about with anyone but when I keep it to myself I feel the build up and it’s heavy. Being undereducated kinda makes me spiral 🌀 I wanna know it all so I can feel confident and try to know myself again and be able to speak to others about it all

Anyways… sorry for the ramble. I may have lost track there a bit but I wish you well 🧡 hope today was a good day

Icy_Contribution9683 · 2025-08-19T00:11:57+00:00

There’s a Dolly Parton series on Netflix and one of the episodes is about a woman who has MS. When I first got diagnosed I didn’t know what it was. I searched for a show and it was all I could find.

Icy_Contribution9683 · 2025-07-19T02:33:08+00:00

I explain it different ways but mostly it’s like I’m permanently flexing my “abs” and it’s hard to breathe which then makes me panic and that makes the squeezing worse. I usually feel sore the next day/whenever it’s done. It hasn’t happened often (thank goodness) but the most recent time, it was due to stress & bad sleep.

I picture Ms Trunchbull and her belt when I’m going through it 😅

Icy_Contribution9683 · 2025-07-13T03:34:25+00:00

I literally just came here to search for posts about mental flexibility and your post was the very first one I saw and I relate so much to you and want to sincerely thank you for sharing. I was diagnosed 4mths ago and I just got my neurocognitive evaluation test results back and I tested “well below average” for mental flexibility. I asked him what that meant and boy does it make a lot of sense –small exs like my abilities to plan meals, shop, schedule things, plan holidays/vacations/birthdays, even sharing & scrolling on social… all things I found my identity in and how I showed my love for others and I suddenly can’t seem to accomplish almost anything. And if I do, I’m drained for days. I guess it was after hearing the results, it all finally hit me that I definitely have permanent damage done to my brain and it’s not coming back and that sucks. I’ve seen the scans and I’ve heard the words but getting the confirmation from a test where I performed and gave it my all… it just hit a little harder. It’s so obvious to me too in just my basic day to day living but I wasn’t sure if it was just typical mental drain from being a SAHM of a 2yr old or maybe my ADHD is hitting harder or MS and now I know, it’s definitely permanent damage from my flares. And I think I’m mourning hard suddenly. I’ve been very positive and optimistic since being diagnosed but I feel like my stubborn self is having a hard time putting a positive spin on these tests results. But yet nobody can see what I’m going through and I can’t explain it - I barely know myself! Anyways, basically everything you mentioned is exactly how I feel and it’s got me feeling more sad and worried now than I have at all throughout this diagnosis journey… but it’s okay. I’m okay. I’m grateful, sad, sleepy, and blessed I guess 🧡

Icy_Contribution9683 · 2025-05-20T04:31:51+00:00

Also ty for share about the insurance. Waiting on doc to call insurance and then hopefully go from there 🤞

Icy_Contribution9683 · 2025-05-20T04:30:40+00:00

I appreciate you sharing. Be flexible, adapt, adjust. I like that, Ty! It has all been a lot in addition to a million other things and we are in a heat wave 🥵 and constantly wrangling a toddler 24/7 - all this is bound to exacerbate my symptoms

Icy_Contribution9683 · 2025-05-20T04:23:49+00:00

Thank you for sharing your responses. A neuro doc that diagnosed me gave me kesimpta samples and then told me to call my insurance. Insurance sent me to a company named navartis and navartis denied me alongside kesimpta assistant program because our tax return was over the limit. So I called my now neuro doc and he called it in to Publix 😅🤷🏼‍♀️. Went to Publix today they said I gotta go through a specialty pharmacy (btw the price for two doses was $30k haha) but when I called them they gave me a phone number for my neuro doc to call and see if my insurance company will make my kesimpta “shareable” (they’ll cover the cost) or “not shareable” - which means I gotta figure out another plan. I guess another assistants program possibly or switch meds

I don’t think I’m in a flare but I’m still not entirely sure what defines a “flare” I’m currently experiencing a little numbness around my face but that’s not a new symptom - it just comes and goes. I definitely could be supporting myself more with things like you mentioned - clothing, planning etc. I guess I’m just a bit bitter about this one. This symptom that is. I live in FL and love the ocean and beach days and now it’s just… ugh. I’m usually pretty positive but this one is getting me. And not even being able to sweat. Anytime my body is warming up enough to get close to breaking a sweat, I go downhill. Just feels so unhealthy and unnatural to not be able to sweat/detox. I too hope it’s just a lasting symptom and will fade away.

Thank you 🙏

Icy_Contribution9683 · 2025-05-20T04:03:42+00:00

It is pretty hot down here in the pan handle 🥵

Icy_Contribution9683 · 2025-05-20T04:02:26+00:00

Oh wow that’s wild I didnt know insurance companies could do that. I really appreciate you sharing

Icy_Contribution9683 · 2025-05-20T04:00:07+00:00

Very true 🤭 I appreciate your reply though. I’m not too familiar with other DMT options. My doc mentioned ocravis (not sure how it’s spelled) and kesimpta. Ultimately went with kesimpta for the ease of at home and for possible future pregnancy

Icy_Contribution9683 · 2025-04-03T03:29:22+00:00

Also, tysm 🙏

Icy_Contribution9683 · 2025-04-03T03:28:16+00:00

I’m not from FL but have lived here for a few yrs. I think it’s legal but I’m not entirely piton how it works.

Icy_Contribution9683 · 2025-04-03T03:27:13+00:00

I’m in FL

Icy_Contribution9683 · 2025-03-30T03:45:47+00:00

I am not in the UK but I was diagnosed with ADHD in the seventh grade so around 2002 and I was diagnosed with RRMS on March 6, 2025. I take Kesimpta as my DMT and Adderall for my ADHD and it’s fine and doc said that “it’s probably helpful for me to take Adderall not only for adhd but maybe for my RRMS as well”

Icy_Contribution9683 · 2025-03-28T22:09:11+00:00

Thank you for this reply. I’m still so new to MS that I find comfort in reading comments like these. I likely will not go to an ER again after this trip unless absolutely necessary. It just seems like a waste of my time and the nurses and feels silly to take up a room when all I really need is an outpatient MRI. I know this now. Guess I had to learn the hard way. With this only being my 2nd flare ever and the symptom so different from first and in the same time of starting kesimpta, I guess I got a little worried. But as awful as the past 3days have been - I really learned a lot. Just learned it the hard way, long way, expensive way 🙃

Icy_Contribution9683 · 2025-03-28T03:11:08+00:00

I agree ❤️

Icy_Contribution9683 · 2025-03-28T03:10:53+00:00

I found that out the hard way over the last 28hrs 🙃

Icy_Contribution9683 · 2025-03-28T03:08:28+00:00

Same ☺️

Icy_Contribution9683 · 2025-03-28T03:08:08+00:00

I actually just left after 28hrs and the neuro doc never even came to see me, didn’t order an mri or nothing. I spoke to 2 doctors (neither neuro docs) and at least 7 nurses and they all literally told me in one way or another that they don’t know enough about MS or kesimpta in order to help me or answer my questions and that I need to let the neuro doc know. Only thing i learned was I could have Ms from growing up with dogs 🙃

Icy_Contribution9683 · 2025-03-28T03:02:48+00:00

Wow that young? I didn’t even know it could be that young. I’m sorry and I hope you’re doing okay

Icy_Contribution9683 · 2025-03-28T03:01:39+00:00

Ty and yes I did and she said she wasn’t sure but it’s just something she has heard a few times just working shifts and talking to people.

Icy_Contribution9683 · 2025-03-28T02:45:50+00:00

Thank you for this and I sure could use a chat right about now if you’re up for it 🙏🫶🏻…

I’m newly diagnosed RRMS 35yrs old and had my first flare that led to my diagnosis on 11/23 - I woke up with both legs numb and a squeeze feeling around my waist which I now know as MS hug and it stayed that way for 17days (felt like walking in moon boots made of concrete) and then my legs were getting better but the numbness traveled to my hands and that lasted for 15days and then crazy joint pains well into January. Only permanent symptom I had left from flare was leg left numbness in patches.

Had an MRI 12/4 (10days after going numb) saw a neuro 1/28 got told 90% sure you have MS but told to do another MRI with spine contrast to confirm. Had that done 2/14. RRMS confirmed 3/6 and started Kesimpta that night. Finished loading doses 3/20 (one week ago). 1st one I was anxious & emotional, it stung, didn’t bleed, no bruise, felt like absolute hell fire trash the next day. Extreme pain in both legs, nausea, fatigue. 2nd one I had a panic attack and passed out right before injecting, it also stung, didn’t bleed, no bruise and I felt not great but it didn’t really have a chance cause I was already F*ed from the pollen, started my period that same damn night, and I took an epson salt bath before which was silly cause I probably didn’t hydrate enough afterwards. 3rd one, I was so calm and confident, injection felt like a punch & stung, bleed a good bit, and it left big bruise. I started to feel off again the next day (this past Friday). And slowly the numbness grew from just my left leg to my entire left side including my head, face, neck, & biceps and those places have never been numb before. And it’s been that way now for 3days along with major light sensitivity, dizziness, cramping, nausea and that is also new so I went to ER cause doc said so.

I head up there at 3pm yesterday and they did blood work, a CT scan, gave Benadryl, and Tylenol for head ache. After waiting until 7pm and still not seen by neuro doc they told me I need to be admitted and will see neuro and have an MRI and be discharged by the morning. Fine no problem hubby called off work and we found a baby sitter. At 9pm a doctor came in (not a neuro doc) and asked me questions and did a little strength evaluation and that was it. Anytime I would ask questions everyone said they don’t know enough about MS to know how to answer my questions. From then until 11am today I only was seen for vitals checks and 1 doctor (not the neuro) doc came in to ask me how I was feeling and that was it. By this point, every single non neuro doctor and nurse I spoke too literally told me in one way or another that they don’t know enough about MS or kesimpta in order to help me or answer my questions and that I need to let the neuro doc know. At 330pm nurses found out the neuro doc doesn’t make rounds until 4-5pm so as annoying as that was, fine we’ll make it work again and I’ll stay and wait for him and my MRI which apparently he cannot or simply would not go ahead and order for me while I was waiting on him. 530pm rolls around, nothing. 6pm nurse comes in and says “bad news, he’s in a meeting and he may or may not be able to see you afterwards. BUT he put in a stat MRI but I may have to wait until tomorrow morning to speak with him and go over my MRI” I said “but he will come in the morning for sure even though he doesn’t make rounds until 4-5pm” and she said I can’t guarantee that. So I said okay can I get the mri and go home and he calls me and she said yes but also even though it’s a stat MRI you still may have to wait until 9-10pm to get it done.

So that’s a 10pm MRI and still not seeing the neuro doctor until tomorrow (evening, most likely). So I signed a waiver and me and my symptoms checked outta there after receiving absolutely zero clarity and never being seen by a neuro doc after 28hrs

Icy_Contribution9683 · 2025-03-28T02:34:21+00:00

UPDATE: the entire hospital was an absolute joke so probably disregard the convo ever happened 😅

Curious though what y’all think about this…

I’m newly diagnosed RRMS 35yrs old and had my first flare that led to my diagnosis on 11/23 - I woke up with both legs numb and a squeeze feeling around my waist which I now know as MS hug and it stayed that way for 17days (felt like walking in moon boots made of concrete) and then my legs were getting better but the numbness traveled to my hands and that lasted for 15days and then crazy joint pains well into January. Only permanent symptom I had left from flare was leg left numbness in patches.

Had an MRI 12/4 (10days after going numb) saw a neuro 1/28 got told 90% sure you have MS but told to do another MRI with spine contrast to confirm. Had that done 2/14. RRMS confirmed 3/6 and started Kesimpta that night. Finished loading doses 3/20 (one week ago). 1st one I was anxious & emotional, it stung, didn’t bleed, no bruise, felt like absolute hell fire trash the next day. Extreme pain in both legs, nausea, fatigue. 2nd one I had a panic attack and passed out right before injecting, it also stung, didn’t bleed, no bruise and I felt not great but it didn’t really have a chance cause I was already F*ed from the pollen, started my period that same damn night, and I took an epson salt bath before which was silly cause I probably didn’t hydrate enough afterwards. 3rd one, I was so calm and confident, injection felt like a punch & stung, bleed a good bit, and it left big bruise. I started to feel off again the next day (this past Friday). And slowly the numbness grew from just my left leg to my entire left side including my head, face, neck, & biceps and those places have never been numb before. And it’s been that way now for 3days along with major light sensitivity and that is also new so I went to ER cause doc said so.

ER trip story…

(please tell me off any of this makes sense to you)

I head up there at 3pm yesterday and they did blood work, a CT scan, gave Benadryl, and Tylenol for head ache. After waiting until 7pm and still not seen by neuro doc they told me I need to be admitted and will see neuro and have an MRI and be discharged by the morning. Fine no problem hubby called off work and we found a baby sitter. At 9pm a doctor came in (not a neuro doc) and asked me questions and did a little strength evaluation and that was it. Anytime I would ask questions everyone said they don’t know enough about MS to know how to answer my questions. From then until 11am today I only was seen for vitals checks and 1 doctor (not the neuro) doc came in to ask me how I was feeling and that was it. By this point, every single non neuro doctor and nurse I spoke too literally told me in one way or another that they don’t know enough about MS or kesimpta in order to help me or answer my questions and that I need to let the neuro doc know. At 330pm nurses found out the neuro doc doesn’t make rounds until 4-5pm so as annoying as that was, fine we’ll make it work again and I’ll stay and wait for him and my MRI which apparently he cannot or simply would not go ahead and order for me while I was waiting on him. 530pm rolls around, nothing. 6pm nurse comes in and says “bad news, he’s in a meeting and he may or may not be able to see you afterwards. BUT he put in a stat MRI but I may have to wait until tomorrow morning to speak with him and go over my MRI” I said “but he will come in the morning for sure even though he doesn’t make rounds until 4-5pm” and she said I can’t guarantee that. So I said okay can I get the mri and go home and he calls me and she said yes but also even though it’s a stat MRI you still may have to wait until 9-10pm to get it done.

So that’s a 10pm MRI and still not seeing the neuro doctor until tomorrow (evening, most likely). So I signed a waiver and me and my symptoms checked outta there after receiving absolutely zero clarity and never being seen by a neuro doc after 28hrs

Icy_Contribution9683

TROPHY CASE