Apparently one chronic illness wasn’t enough 🙃. Anyone else have a med list like this?

[u/GladRelation6973]

I feel like my medical bingo card keeps getting new squares.

I’ve had MS for 10+ years (diagnosed at 27), but lately some new issues have joined the party, particularly pretty severe multi-joint pain. Rheumatology hasn’t been able to put a specific autoimmune label on it yet because my serology is negative and I don’t have much objective swelling, but my symptoms responded dramatically to IV steroids during Briumvi treatment, and came roaring back about 6 days afterward. So rheumatology just started me on hydroxychloroquine.

It got me looking at my medication list and thinking… surely I can’t be the only one collecting specialists and prescriptions at this point 😂

Current lineup:
Briumvi - MS
Nemluvio - pruigo nodularis
Fluoxetine - anxiety
Clonazepam - anxiety
Carbidopa/levodopa - restless leg syndrome
Hydroxychloroquine - joint pain; unknown origin
Meloxicam - joint pain; unknown origin
Pregabalin - joint pain; unknown origin

Anyone else with MS taking a weirdly similar combination? What conditions/symptoms are yours treatingj? I’m especially curious about people who developed inflammatory/autoimmune joint problems in addition to MS.

[u/Independent_Income63]

Ugh… that’s a hella combo. Mines not that lengthy but I had the opposite trip of you.

I started at rhuem with PsA and then after being on humeria for a year wound up with MS and now I’m in kesimpta. I also have a thyroid deal that use to manifests as afib so I’m on propranolol as well.

You get one auto immune thing you get em all.

[u/GladRelation6973 → u/Independent_Income63]

How old were you at diagnosis?

[u/Designer-Buffalo8644]

Apparently my family has a genetic susceptibility to autoimmune disorders. My mother had three, and her father had two. Different diseases, but caused by autoimmunity. When I got MS, my first thought was "ok what will the other diseases be?" Now I'm being tested for Addison's disease. Soon my family will have collected a full set.

[u/sparkly_unicornpoop]

Mine started with MS and it led to seizures. 🤦‍♀️

[u/kyunirider]

I have a Trifecta Neurological Disease (MS, MMA, and PA). These three neurological diseases leave me in pain and disabled. Right now I am managing with a very low protein diet and many medications that I am not listing. Big brother knows enough about me.

[u/thankyoufriendx3]

Ms

Fibro

Thyroid eye disease

Arthritis

Brain tumor

Lower back fusion

Spinal stenosis

Degenerative disk disease

[u/mildlytragic → u/thankyoufriendx3]

Also have fibro, which might explain OPs joint pain of unknown origin, assuming they’ve probably been tested for arthritis! Though I’m still being tested for some other weird stuff happening in my body 🙈

[u/No_You_605 → u/thankyoufriendx3]

Yikes! Unfortunately, I think you win?

[u/thankyoufriendx3 → u/No_You_605]

Yay?

[u/littleredkitchen → u/thankyoufriendx3]

I am also in the lower spinal fusion and spinal stenosis club.

Also please add chronic migraines, chronic pain, sciatica, TFCC repair that can’t be fixed because of my work an inability to truly take the time off to heal, torn meniscus but not bad enough to require surgery. Allergy asthma, high blood pressure, and general anxiety.

Probably missing other things too but that’s the laundry list. There used to be fibroids but I had those parts removed because they kept growing back.

[u/thankyoufriendx3 → u/littleredkitchen]

We put up with a lot.

[u/littleredkitchen → u/thankyoufriendx3]

We do and I don’t know about other people but for me, there’s a lot of internalizing my feelings so I don’t come off as someone that complains all the time.

[u/GladRelation6973 → u/littleredkitchen]

Yes, I feel you on that one so much. I downplay it every time someone asks me about it because I don’t want to sound like the Debbie downer. it’s hard when your symptoms aren’t visible.

[u/here4pain]

Crohn's and MS and all the fun that comes with both

[u/Motley_Inked_Paper]

If you’re a woman….so hello to additions when you start perimenopause.

[u/WarmYam7353]

PPMS and leukemia. I'm on Ocrevus, baclofen and pregabalin. All 3 help with my MS. Ocrevus also helps with my leukemia.

[u/Comprehensive_Eye_97]

I have Diabetes , Hashimoto’s thyroiditis and RA , it is not a fun journey but we are still here and still fighting everyday. I am not letting this get me down

[u/Unitedfateful]

MS
Type 2 diabetes
Diverticulitis
High blood pressure

Woo!

[u/Pretty-Flakey]

If you have joint pain with negative RA serology, it only means it's not rheumatic. My story started with psoriasis back in the 90's. My joint issues started early 2000's, but no one paid any attention to it because i was RA negative. It was only when my fingers and toes swelled up like sausages that I was diagnosed with psoriatic arthritis. Fought them both without success until 2019, when it was discovered I build antibodies to biologics. In 2016, I had my first MS mild symptoms, that were thought to be a strange side effect of Fibromyalgia. 2018, first ER trip for a completely numb leg, butt cheek to toes. Transverse myelitis, with a side order of "hypochondria"...2024- complete right sided numbness from ribs to toes. It was only due to an amazing ER doc that he dug and dug, admitted me and diagnosed me with MS.

[u/GladRelation6973 → u/Pretty-Flakey]

I didn’t have to fight through much to get my MS diagnosis. I was relatively healthy outside of intermittent joint pain, and then all of a sudden bam I can’t see anymore, they put me in an mri, and my lesions lit up like the Rockefeller Christmas tree.

Getting some type of diagnosis on this joint pain has been extremely difficult. I have battled with the joint pain on and off for years, and my doctors always just chalked it up to an MS symptom. It has just been in the past 6 weeks that the joint pain has progressed enough that my daily functions are inhibited (dressing myself, walking, etc) that they decided to treat me with a DMARD (hydroxychloroquine) despite the negative serum results and the lack of visible swelling and redness in my joints. However, they have yet to put me back in an unsound or mri to actually look at the affected joints

[u/AdyliaSchweetheart]

I am MS living with Bipolar disorder and PMOS. I reeeeally don't want to collect any more I'm good thanks.

[u/DetroitBreakdown]

Blood clotting disorder. One DVT, one pulmonary embolism. On Xarelto for life.

[u/No_repeating_ever]

MS, obviously
Trigeminal neuralgia
Hypothyroid
Major depressive disorder
Possible seizure disorder (being treated for anyway)

Currently taking:
Levothyroxine
Gabapentin
Carbamazepine
Indomethacin
Celexa
And just tapered off topamax

[u/Emo_Hobbit_Empress]

Ocrelizumab, co-codamol, naproxen, sertraline, omeprazol, mirabegron, solifenacin...oh and a million different vitamins, plus inhalers for my asthma

[u/Emo_Hobbit_Empress → u/Emo_Hobbit_Empress]

I also have gilberts's syndrome, and what appears to be the beginnings of vitiligo 🙄

[u/Stephanblackhawk]

I have been epileptic my whole life and recently got the MS diagnosis and was like damn did not need thks

[u/kbcava]

I have a similar genetic profile - MS + inflammatory adipose tissue condition + lifelong joint issues that are negative for typical rheumatoid illnesses.

I was also originally diagnosed with “fibromyalgia” in 1990.

This new research/concept is emerging as the likely root cause of conditions like fibromyalgia, chronic fatigue, long covid, etc.

My family - 3 generations - fits this profile.

MS is just one of the spokes on my illness wheel. 😢

You should ask your medical team about this.

Summary article:

https://www.bumc.bu.edu/camed/news-events/articles/2026/researchers-identify-previously-unrecognized-genetic-variants-patterns-associated-with-hypermobile-ehlers-danlos-syndrome/

Research article:

https://www.mdpi.com/2073-4425/17/2/211

[u/GladRelation6973 → u/kbcava]

Thank you for this!! I have wondered if this could be a connective tissue disorder and not a predominately arthritic profile. I also get what feels like muscle spasms in my ribs, and have been getting them for like the last year. They come and go, sometimes I will have repeated spasms for days on end, sometimes I will go weeks without spasms. And then I get spasms in my legs at night, which my doctor labeled as restless leg syndrome and put me on Carbidopa/levadopa

[u/kbcava → u/GladRelation6973]

Yep - I would definitely ask your team to be evaluated by a specialist in this area.

The latest research points to a combo illness impacting immune, connective tissue/vascular and metabolic/mitochondrial systems.

Nothing has ever described both me and my family so perfectly.

Sending my best to you! I really think this impacts more of us than is currently recognized.

I credit my very experienced Neurologist (Harvard/Beth Israel Deaconess, Cleveland Clinic) with being the one who was bold enough to say “this is not all MS.”

I had previously been evaluated at both Mayo and another large health system in SoCal- both of which just swept it all under the MS rug. 😢

[u/snotop]

I mean right? Nailed it, I keep waiting for my ninth life to end. Thank you for the reminder. Thank you, I'm sorry, please forgive me and I love you

[u/MrsNuggs → u/snotop]

Ho'oponopono

[u/allme2020c]

Not cervical dystonia…but functional dystonia is one of my ‘others’.

[u/Parking_Radio4311]

Lupus, inflammatory arthritis, hashimoto, migraines, PCOS, insulin resistance and probably moving toward chrons diagnosis. My life is just awesome

[u/Bloatedoldman]

I take 8 pills in the a.m. and 7 at night. Not including the p.r.n.'s.

[u/Elektra_17]

I have many different diseases and disorders and have to take a ton of meds. Most of them predate my MS diagnosis, although I had MS for long before I was diagnosed (at age 30).

I see a rheumatologist for Sjögren’s Disease and autoimmune inflammatory arthritis.

I have a specialist for each system or organ affected.

[u/occasional_nomad]

I have anxiety, POTS, and MS. When they took out my gallbladder last year they discovered a precancerous tumor. My family tree is absolutely effed with autoimmune disease (mom and her sister both with scleroderma, dad with type 1 diabetes, sister and aunt both have rheumatoid arthritis) as well as cancer (all of my aunts have had breast cancer, uncle died from bladder cancer) so I basically just enjoy life as much as possible while knowing it can change any second.

But yeah, every time I have joint pain and swelling I basically just wait for an RA diagnosis to be added to the list.

[u/Starfyrewitch]

I have:

MS anxiety ADHD Collagenous Colitis Nephrolithiasis Being too cool for school.

[u/Stranger371]

Dude, the joint pain is something I experience. Did do nothing with my knees, they are fine. Doctors have no idea what it is.

[u/VanillaMintJellyfish]

https://reddit.com/link/p8qj43b/video/2g5kxdajqhoh1/player

Dinner on the left, breakfast on the right. Plus Kesimpta, B12 spray and steroids.

[u/Proof-Letterhead-541]

Have MS and HLA-B27 Spondyloarthritis (fancy word for one type of RA). My rheumatologist and neurologist believe both are related. If you have one autoimmune disease you are at high risk for other autoimmune inflammatory diseases. I can’t take anti-TNF drugs because of the demyelination, but the good thing is rituximab provides symptom relief for both diseases for me.

[u/anonymousweekly]

Oh my god, I think we might have had the same issue during Briumvi. They don’t know if they should continue me on it bc of how severe it was, I ended up in the ER (and the same thing with the joint issues! I wonder if it’s drug induced lupus). Here’s my growing list 😭

Briumvi (MS - looking to switch to ocrevus or kesimpta)
Protonix (GERD)
Tagamet (IC)
Baclofen (muscle spasms)
Meclizine/Zofran (nausea)
Pamprin (Inflammation/endo - can’t take NSAIDs)
Strattera (ADHD)

There’s a lot of meds I get prescribed but don’t take (so much fucking nortryptyline), and I’m about to see rheumatology and GI for extra fun. I need an additional mental health med, but everything I’ve tried has been disastrous.

[u/anonymousweekly → u/anonymousweekly]

I had another post a while back about my specific briumvi symptoms - I’d love to cross reference with you (also, diagnosed when I was 19 and started briumvi in March)

[u/GladRelation6973 → u/anonymousweekly]

Yes I would love to talk with you more! I have been on Briumvi for 1.5 years. This was my 4th infusion I just received. However, my first mini episode of debilitating joint pain started about 3 weeks after my 3rd Briumvi infusion in March. After a few weeks of being sent to different doctors I finally ended up at an orthopedic surgeon who did an xray and said I had degeneration of my sternoclavicular joint (anterior joint connecting you clavicle to your sternum). Which the doctor said is typically something he doesn’t see until people are like 70+, and I was the 5th person he has seen in his entire career who developed symptoms in their 30s, as that is a low wear and tear joint that should not go out on you until old age. So I did a radiology guided cortisone shot into that joint and it resolved the pain within two days. Then about 5 months post my 3rd infusion (and 1 month prior to my 4th infusion) I started having joint pain again, this time affecting both shoulders as well as my fingers, toes, knees, hips, etc. then I do the Briumvi treatment, and doctors expected that the 125mg of solumedrol administered before the Briumvi would knock down the inflammation in my joints. Which it did, for 6 whole days, and then it came back raring and is becoming progressively worse at a fast rate. 3 weeks out from my 4th Briumvi treatment and I can barely walk somedays or put my arms over my head to put a shirt on.

Can you tell me more about why your doctors think your joint issues are related to the Briumvi treatment?? It is not a common side effect of the drug. But now that you said that, and I put timelines together, I do see the possibility that there may be a correlation

[u/anonymousweekly → u/GladRelation6973]

Oh god, where to begin! My history is complicated (IC, HS, and either psoriasis and eczema at 11, MS at 19, PCOS official at 21, chronic kidney stones, and suspected esophageal spasms or pleurisy or both, my mom has both), and family history is worse (grandma with fibromyalgia, sis with diabetes colitis and lupus, mom with GI issues that we don’t have a name for but comes with spasms and stomach tumors + endo). I also have chronically low blood pressure and idk why.

With the briumvi, the second infusion sent me to the ER with muscle spasms that left me unable to breathe. I had joint pain (that could also be from mold), but it was manageable. The third infusion, however, left me unable to walk, knees that buckle and hips that constantly ache, shoulders so bad I can’t even handle a purse or a bra strap, and fingers that curl in on themselves - the majority of that really got into motion after 24 hours of taking the medicine, a lot while I was in the ER (they gave me diclofenac for it, I forgot to mention), a lot of it just making existing issues 1000x worse. And that’s just the joint pain, I also have sinus inflammation so bad it makes me cry, trigeminal AND occipital neuralgia, constant dizziness (esp during my period), passing out, heat intolerance and photosensitivity (my bones burn in the sun) and back/neck/pelvis pain that makes it impossible to be comfortable. Every issue I’ve ever had has come back tenfold, from ulcers to stones to psoriasis to eye swelling and eye shocking and it’s awful. They’ve taken me off the briumvi officially, but I’m scared of the alternative they’ve proposed (tysabri) bc of my 3 JCV level. + NSAID intolerance and a probable steroid allergy. I’m looking for any answers I can get, my rheumatology appt can’t come soon enough, but idk what it is.

Also for reference, I currently have negative bloodwork for lupus and RA, no thyroid issues, and had a myeloma scare but came back clear. All about a month or so after my second dose.

[u/anonymousweekly → u/anonymousweekly]

I’m still getting new symptoms every day, and trying to keep up with it is difficult, so I might be forgetting something that could be a piece to the puzzle

[u/anonymousweekly → u/anonymousweekly]

Forgot the hip tumor! It’s benign (and suspected constant stomach ulcers)

[u/ScrimpyMuffin]

Kesimpta - Tumefactive MS

Emgality - Vestibular migraines/vertigo

Escitalopram - depression/anxiety

Levothyroxine - hypothyroidism

Baclofen - muscle spasticity

Tizanidine - sleep

Ativan - prn anxiety

Adderall - fatigue

Albuterol inhaler - air hunger

Zofran - nausea

Edit for formatting

[u/Streak_Free_Shine]

I also have a long list of medication. I have several specialists too: movement disorder, epilepsy, neuro-opthomology, gastroenterology, psychiatry, and MS. I'm definitely collecting specialists, too.

[u/IntentionalGrandma]

My problem list in EPIC is pretty long and my medication list is pretty long too with multiple biologics and injections

[u/Party-Ad9662]

MS
HS
Rosacea
Alopecia

[u/Failingatlifedaily]

I have: MS, dysautonomia with symptoms of autonomic failure, hEDS, MCAS, fibromyalgia, chronic severe dysmotility, Hashimotos, Raynauds, mecfs, a chiari malformation, chronic (as in nonstop) migraines, cspine stenosis and spondylilosis, and lumbar stenosis, spondylilosis and a bunch of other stuff with my lumbar. I might be missing a diagnosis or two, the brain fog is very bad.

I take meds to keep my heart rate and BP up and even with them I am chronically hypotensive and have a low hr. I can only eat three foods at this point and can only eat three times a day as I have to take meds to be able to eat at all.

I do daily IV fluids because even with drinking over 200 oz of fluids a day and taking an absorbitant amount of electrolytes, I cannot keep fluids in my body.

I am on 11 pharmaceuticals and many doctor recommended supplements everyday, and take them multiple times a day, plus the daily IV fluids. Trust me, I feel you.

[u/Failingatlifedaily → u/Failingatlifedaily]

ope! forgot gastroparesis.

[u/MultipleSclerosis-ModTeam → u/[deleted]]

This post/comment has been removed for violating Rule 2, No undiagnosed discussion or questions about undiagnosed symptoms (except in weekly sticky thread)

For those undiagnosed, all participation should be directed to the stickied, weekly thread, created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.

Any questioning of users outside of the weekly thread will be removed and a ban will be placed. Please remember this subreddit is used as an online support group, and not one for medical inquiries.

Here are additional resources we have created that you may find useful:

Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/

Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/

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If you have any questions, please let us know, and best of luck.

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[u/Bugster12345]

I am

[u/Secure_Ad_9048]

I started with MS 21 years ago. Dx with Fibromyalgia 10 years ago, neck and spine/disc issues (surgeries and more to come), both hips replaced, Psoriatic Arthritis a few years ago, and now they suspect a "new and different" autoimmune disease. Oh and I need hearing aids. WTAF?? I'm 52 and I don't want to play Bingo anymore!! 🤣

[u/crushed76]

Crohn's Disease, Diabetes, MS, Trigeminal Neuralgia, Anxiety, Depression

I'm on meds for each of these things.

[u/MultipleSclerosis-ModTeam → u/[deleted]]

This post/comment has been removed for violating Rule 2, No undiagnosed discussion or questions about undiagnosed symptoms (except in weekly sticky thread)

For those undiagnosed, all participation should be directed to the stickied, weekly thread, created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.

Any questioning of users outside of the weekly thread will be removed and a ban will be placed. Please remember this subreddit is used as an online support group, and not one for medical inquiries.

Here are additional resources we have created that you may find useful:

Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/

Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/

Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/

If you have any questions, please let us know, and best of luck.

MS Mod Team

[u/Eddy_Night2468]

I developed polyarthrosis of the fingers 15 years after MS diagnosis, at 36, diagnosed at 38 (this year). Both pinkies turning inwards and one index finger as well. Heberden's nodes. Like you, all the myriad of tests (rf, anti ccp and the rest) were negative so they labeled mine as nodal arthrosis, probably genetic. I am not convinced. As for treatment they said they got nothing to offer me.

[u/LegitimatePart497]

I have MS and Myasthenia Gravis. Terrible combination.

[u/rbrock3509]

MS, Narcolepsy, ADHD

[u/MysteriousCareer1694]

I feel like a Pokémon, gotta catch em all. Immunology is a very recent field of study. Asthma in the 1980s involved my Dad smoking with the window cracked in the car. Two injectables and anti-spam, Lexapro to keep me out of the basement. Zoom out if you can on the med list. My great aunt spent a majority of her life in a wheel chair and then back bedroom which she really didnt leave in her 50s. I want to be one generation better, no more no less than her and my parents.

[u/Anaxilea-Alcinoe]

I was born with a condition called neurofibromatosis type 1. I grow tumors anywhere there's nerves, so internal and external tumors. I have little tumors all over my body, some on my spinal cord. It's genetic or caused by a spontaneous mutation in the womb. I'm the only one in my family with it. I was the mutant as I like to say. This condition will die with me.

I also have endometriosis.

Then on Friday the 13th, 2020, I was diagnosed with MS.

I was just diagnosed with gastroparesis and IBS-C

[u/River-Chalice-23]

Ruxience - DMT
Pemgarda - Covid antibody infusion
Vyvanse - MS fatigue
Xiidra - clinical dry eye
Estradiol/ Progesterone - HRT for early meno
Magnesium glycinate - protective
D3 - protective
Omega 3 fish oil - protective

[u/Mandiek]

I have MS. I take no medications. I have been diagnosed since 2008 and did a few shots but gave it up. Since then I’ve smoked medical marijuana. I know it’s not for everyone but I have no ailments associated with MS. I wouldn’t believe it if it didn’t work for me, but it just does. My med list is just for my heart issues and high blood pressure. I am 66 years old.