My insurance provider asked me to submit positive biopsy report and set of icp & medicine card?

Is it right expectation?

I am (F30) have been diagnosed and on medication for exactly a year, but I was incorrectly diagnosed for 5 years before that, as no one bothered to do an MRI on my brain to see the lesions.

i have been single for 4 years, after a toxic relationship that i promised myself i wont do any harm that was done to me in that relationship to anyone else so i needed to heal first before any attempts to enter a new one , and after my diagnosis i realized how it would be hard finding a partner who understand, i mean, am still figuring this shit out myself so why do i expect empathy or understanding from someone else.

I have been talking to this guy (M33) for literally 12 days, and we had good chemistry, and he is nice and calm and comfortable to talk to, but we have major differences that I thought wouldn't be the problem; he is agnostic i am technically religious compared to him. He believes in nihilism, and I am the opposite of that.

in brief, nihilism is a family of philosophical views that reject the existence of any objectively meaningful purpose, moral value, truth, or knowledge.

And this is what Google says i did not really have a full grasp of his own definition of it, which is the core issue of the problem.

i havent told him yet about my MS, and we were having a discussion, and i am pushing to understand whats his definition and how does he apply it in real life, and he did not give an answer saying it doesnt make sense to me so it doesnt really matter but i insisted, and we reached a point i expressed a feeling that his beliefs are contradicting to his action and other stuff he said so i dont understand, and my need for validaition and assurances got in the way and i technically told him he doesnt care about me.

In reality, he was invested in our long conversations, extending hours the whole 12 days we have been talking and sharing private stuff about him and his past. He has been single for 7 years, so our connection was a first for him in a long time, as well as for me.

All of this is happening with an MS in the background, i have been struggling all month with the heat, pain all over my body, insomnia, and brain fog, literally my mind went blank twice during our heated discussion, i flared up, overheating, after our conversation ended badly with me apologizing porfusely that i did not mean to hurt him, i stared at the void for an hour, then i took a cold shower, water cold on my head literally becoming warm reaching my feet. i have been sleep-deprived for a week, went out for important errands 3 days in a row, vivid dreams walking up as if I was awake in another universe, sleeping is not rest and showers are exhausting, and I am taking antibiotics for a skin issue that makes me throw up, and I am at my wits' end.

And I hurt him; I did the ONE thing i promised myself not to do. MS will not be a factor ruining my relationships, but it did. The very first time I tried to communicate with someone.,i refuse to say about my MS in the begining cause i dont want a relationship to be based on pity, or someone feeling sorry for me, but it seems to get in the way more times than i can count, i try to process my feelings on my own and be logical when talking to him.

Fellow warriors on DMTs, what are you doing to help yourself through being sick? My youngest started pre-k two weeks ago. I knew I was in danger. They brought home a “mild” to them cold that circulated our whole house. So of course, I’m hit the hardest and taking the longest to recover. I’m also dealing with pseudo-relapse symptoms now. Thanks, Ocrevus.

I am diligent about sanitation and hand hygiene. This is extra insulting as I work full time in a hospital exposed to so many communicable illnesses.

I’m curious if there are extra steps can I take to help recover faster. I have emergen-c immune boosting drinks (haven’t tried yet). I’m on an antibiotic course right now as well.

Please kindly share your secret weapons to faster recovery.

I am so sick of all of the dismantling of the ACA that is going on now. I genuinely detest all of the cult who did this to us… I know we’re gonna lose our existing condition protections eventually, and my son who is on disability is going to probably get kicked off of our insurance even though the awesome ACA lets you keep children with disability on your insurance forever. This is all such a nightmare, and everything has been so hard as these changes have been happening and now this! Why would they be doing this? I’m sure there is some horrible nefarious thing on the way, like no longer combining all of our specialty medication’s with our regular medication’s so that they applied for a deductible. Or some such horrible terrifying evil. Like we don’t have enough on our plates already!

Oh! I just discovered that I can’t add an image? How weird is that…

Anyway, I got email from Accredo today. That’s starting in October. They are no longer going to be combining their invoicing with Express Scripts, which is how it’s worked forever. I can’t imagine why they would do that if it’s not too somehow F with our deductibles or some other massive grift because everything now is a massive grift!

I am not talking about just getting by, I mean putting in the work to IMPROVE?

My other name is AntiqueBother, some people may have seen me. Phone knackered. No idea what these names mean ! I am Luke btw. I want inspiration. Doing stuff every and keeping a log of progress since May. But i want to hear off people who have done it.

I was diagnosed 2 years ago…I spent one full year agonizing what DMT to take. I landed on Kesimpta. I am the kind of person who gets sick from everything… even antibiotics. Kesimpta hasn’t made me sick at all! I feel like it’s a small miracle. I have been on the Bridge program and my one year is up. Uniform Medical has denied all of my appeals to stay on Kesimpta. They are demanding I do step therapy. I don’t think there was ever even a peer to peer, the pharmacologist has not been helpful… all letters are canned and not specific to me. I have EOE and cannot swallow pills and do not want to take copaxone when Kesimpta is working! A “fail” seems like it’s risking permanent damage and is insane to me. I’m so stressed out. Has anyone won this fight with Uniform Medical? Would a health insurance attorney help? Thanks :/

This is a positive message . Last year I was told my relapse was so bad I couldn't live alone anymore . I couldn't walk and barely talk , etc . I know myself and I knew I could dig myself out of my own grave once more . So I did. I took a round of steroids and left the hospital 5 days later , fired my neuro,.and went to Mexico to prove to myself and the world they were wrong . When I got home I started seeing Aaron Boster . He changed my life . We figured out the other things going on inside me , and fixed them when others dismissed me . I started Mavenclad earlier this year and although it made me very sick for a few months , it has helped immensely . Normally a person's symptoms wouldn't get better on a DMT but Dr Boster told me I have had MS for at least 20 years I just didn't know . Until now my body has been sooooo filled with inflammation that any meds calmed it down to the point of tears . I am so grateful. Am I gonna go jogging tomorrow ? No, but I'm not in pain , my head doesn't spin and I can sleep without crying myself to sleep. This is a long story , my story ,but the long and short of it is , NEVER GIVE UP.

Dear fellow MSers. Very sad, heartbreaking news - my thoughts go out to the families of the 3 people who lost their lives. To be transparent, the researchers do not know why the people died, other than there was a systematic immune reaction. They haven’t released that detail yet. The CAR-T trials for MS have paused whilst they investigate further. Link below:

🔗 https://www.biopharmadive.com/news/novartis-bristol-myers-autoimmune-cell-therapy-trial-halt/829218/?mcp_token=eyJwaWQiOjUxOTcyOCwic2lkIjo2MTI5MzIwOTIsImF4IjoiZmU0YmYzM2JiNzAwZmVhM2YzMGQ3ZDE5NDg0ZDBjYjEiLCJ0cyI6MTc4ODI5NDM4NSwiZXhwIjoxNzkwNzEzNTg1fQ.qwCZMb7sfpwfPj9goCxF7I02qyJiNRZISDP1K41cNbA&fbclid=PAVERFWAUEFFZwZG9mAmZkaWQWUNkCQ480MINkIVxXb2kS8KaIVms4kWV4dG4DYWVtAjEwAHNydGMGYXBwX2lkDzEyNDAyNDU3NDI4NzQxNAABpxI1kHT6qrf2HP5dHiXz6Nj_O8iv9c82IWAzDjK2vUmCSIEKQRr9T2BlPQhr_aem_J0umq5Pc1vk-19h4TgNVHQ

I am currently going home after taking the second half of my Ocrevus IV bag. After the first bag I broke out into hives after it was done but this time a new premedication they added was Zyrtec ontop of the Benadryl and slowed down the rate at which the Ocrevus medication was dripping at. I did not get hives this time at all and if I do I was instructed to take 50 milligrams of benedryl and if it’s really worrying or bad then go to my local ER. I did not feel any pain at all or anything it was a smooth it was all good.

Had my first dose of Kesimpta this morning - the nurse told me I should expect to feel a bit rough but I won’t lie, I didn’t think it was gonna be this bad.

I feel like I’ve been hit by a truck. My whole body hurts. Nauseous but can’t get sick because I have no appetite and haven’t eaten anything. I think I have a temperature , my forehead is so hot.

Thankfully, I have a bit of time off work but I’m really struggling with this. Just wondering how long I should expect it to last?

Did people experience this with the following doses too? Should I have taken something beforehand to help?

I've been riding the insurance carousel for the past 2 weeks, nobody communicating and getting different (wrong) answers every time. Basically my dispensary says they haven't gotten the order, my pharmacy hasn't sent the order because the prescription didn't renew, but my doctor has said they've renewed it.

Today's round of calls has gotten me a sample dose from my doctors office so I'm good for 30 days, but the prescription is still in limbo. My doctor isn't available for months but I have an appointment with another doctor tomorrow morning. They claim this doctor can help me with this just as my normal doctor could.

Does anybody have any tips or tricks for what to ask in such a situation? I'm sure this wouldn't be normal or practical but it seems like if we could just call the pharmacy together, it'd get sorted in 30 minutes. "Just sent the fax did you get it? Ok yes good."

Hi all,

Found out about a spinal lesion back in June after experiencing left sided weakness. This began the long process of a work-up seeing specialists, eliminating other stuff, etc.

Finally, in August I was able to get into an MS specialist and was diagnosed with CIS. Yay. I think?

The last few weeks I’ve been up and down. For over ten years now I’ve been dealing with weird neurological stuff that doctors wrote off (at least two straight up called me crazy), ignored, and generally let me suffer through (antagonizing neuropathy, weakness, spasms). When I finally saw the MS specialist it was like angels descended from heaven and she LISTENED.

Initially, I was relieved to finally be taken seriously and have my symptoms be justified with a name.

Now I’m just… sad. My grandmother passed in August from chronic UTIs that eventually infected her brain. It was a horrific thing to witness and reading how UTIs and infections are a common way for folks with MS to go… rattled me.

Plus I’m still dealing with the physical impacts of the lesion (started pt, start neuro rehab in October) and it’s just a lot. I can’t really wrap my head around this being my new normal that could potentially get worse and develop into MS.

And I know, there’s a chance the CIS will turn into a big nothing burger long term and I’m holding out hope that’s the case.

I just don’t really have anyone to talk to about this. How am I supposed to act normal and not lose my mind every possible second?

Any advice, wisdom, anything is greatly appreciated. I’m feeling stuck on this unending rollercoaster of emotions.

Has anyone dealt with itching? Is there anything you’ve taken to help it? Im on vacation and im going INSANE. My neuro prescribed Gabapentin and its helped a little but not completely. Any recs?

I'm starting Ocrevus soon and I'm wondering how the more experienced of you navigate being immunosuppressed. Is it rude to ask my friends and family if they are sick before I see them? If you do ask, how are you asking it? A lot of my friends have children in daycare and the kiddos bring home all kinds of germs. I'm (maybe irrationally?) scared of contracting something from them. At the same time though, I don't want to over step or pry into other's health life. Any thoughts?

I just had my NDIS cut by over half. My housing is tied to my plan and the new number won't cover it. I'm glad I have a good co-ordinator who will advocate for me. I am numb and kind of done fighting.

Hi everyone!

Does anyone else struggle when Autumn starts?
I’ve been on Kesimpta for a year. Last Autumn I had a relapse after being on Kesimpta for only 3-4 months. It started with my old symptoms flaring up, and then later a new symptom appeared.
Now, with Autumn starting again, my old symptoms (headache, dizziness, numbness) are coming back along with headaches. Right now I don't have any new symptoms, but because of what happened last year, I'm really scared and I never know if it's a real relapse or not. 🫠
I live in Europe in the mountains, so the weather changes all the time. Summer and heat actually don't bother me at all. But season changes (autumn) always hit me hard.
How do you guys deal with seasonal shifts, and do old symptoms act up for you too? 😩

Hi all,

My partner (37M) was recently diagnosed with MS, potentially PPMS but the neuro is not totally sure on that. It seems like everyone's experience is pretty different, but are there expected patterns of disease progression?

What I mean is, given that he has difficulty with one leg, should we expect that it will extend to both legs, or to the rest of that side of his body or extend to movement in general? Given that he has diplopia, do we expect his vision to be more affected as time goes on?

He currently has no issues with fatigue or heat or spasticity/cramping. If he manages to avoid new lesions (starting DMT soon) is it still likely that they will start in the future, despite being unrelated to his current symptoms?

In general, are there specific symptoms that generally indicate other symptoms will crop up, or is that not really how it works?

These are of course Qs we can ask his neuro but the list of things to ask her is getting long and right now the main focus is on starting treatment, so I thought I'd check here first.

TIA

Recently got eyes tested for some new glasses. The back of my eye images showed that my eye is nearly healed 100% my new glasses correct my vision to 20/20 again. Only took 6 years to recovery to this level. If you are earlier in your optic neuritis journey just know there is hope 🧡

Hi MS Team, has anyone had any luck with psychology funding from the NDIS? I have had my plan change rejected as apparently it is not directly related to my disability?? Even though I have the report etc from the psychologist that talks about my NDIS goals and how therapy will help achieve them etc.

I go to therapy to talk about how to handle the mental grief of not being the person I used to be, or able to physically do the things I used to do...because of my disability

EDIT: Thanks for the MHCP/Rebates etc, I have the mental health care plan but am still feeling the gap payment ($180) each month. I also would like to stay with my therapist. I know, I want my cake and to eat it too 🤦‍♀️

https://www.fiercebiotech.com/biotech/novartis-bristol-myers-squibb-halt-car-t-cell-trials-due-immune-events

Hi everyone - tomorrow is my first infusion at Kaiser. I think it’s going to be about 3 hours and I was looking at their treatment plan and medications. They offer Demerol for adverse reactions. Has anyone had such bad reactions that they needed Demerol?

It has been a slow and steady descent to where I am at currently & it is not great. This physical and financial mess that is my life and trying to balance everything on my own while dealing with M.S. got to be too much for me a few years back so I quit my job. Took a risk & have been slowly financially bleeding out for the past 3 years. I have lost almost everything....my career, my car, a safe place to live.

The one thing I still have- my health. Now, it is not perfect by any means, quite a considerable amount of pain but what spoonie isn't operating that way?

I still miss my career, quitting was the best thing I could have done for myself.

Both things can be true.

AND I need to remind myself that I am still walking. Spaghetti legs and all, my body is stronger than I give her credit for.

I am trying, thats all I seem to keep doing.

Burnout, grief

and showing up trying to make ends meet.

Knowing full well all those phone calls I made today to agencies involving housing.... no help is coming.

Still have to try, still have to get up and let the kindness of strangers outweigh the heartache from family.

This was supposed to be a rant about how I need to start a go fund me. That i am frustrated and scared and I cant even wrap my head around what to prioritize anymore. My m.s. has taken a backseat to the balancing act that is survival but, i'm walking.

Has anyone tried AZO bladder control to help relieve urgency? I don’t have any accidents but I do have minor leakage to where I have to wear a liner at all times. I go to bathroom every 30min to hour and it is so frustrating. I cannot go anywhere without bathroom anxiety. I’m going to take an international trip in a few months and I’ve literally watched tik tok on where to find public restrooms in this country and have mapped them out on Google Maps. This is something new for me and kind of defeating. I’ve tried oxybutynin and it makes my brain fog tremendously worse and didn’t really help my symptoms. I figured I’d tried maybe a more natural method as im not sure I want to experiment with other meds yet or try Botox. Or if there are any other natural methods you’ve tried that have helped.

I’m struggling to give up caffeine because of my fatigue. I cannot get through a work day without it or else I probably wouldn’t be able to function to have a job.

que me aconseja, soy entrenador de voleibol y estoy mucho tiempo de pie, muchas geacias

I'm trying to determine what my costs will be for this drug and insurance/Pharmacy is not helping.

I have Anthem with a $4000 Deductible and $8000 max out of pocket.

I'm enrolled in Kesimpta's Manufacturer Copay program for $18000 annual benefit. My pharmacy is Carelon and they offer Co Pay Cost Relief too but it uses an accumulator I think to ensure you can't use manufacturer copay assistance against deductible. They are telling me that I would owe $9267 for the drug without their Co Pay Cost relief which doesn't make sense if my max out of pocket is $8000. They are also telling me if I opt of of their program, I could be charged up to 45% of the drug costs. I'm thinking they are just saying this to prevent me from opting out because they won't be able to police my deductible being covered by the manufacturer copay program.

I'm considering unenrolling, paying the costs personally and then submitting for reimbursement to Kesimpta. Has anyone had this issue or tried that with Anthem/Carelon??? Thank you!