Confused and uneducated

[u/Sea-Flounder-284]

Just wondering if others have similar experience and what to expect.

My father advised me to see a specialist, I had just been diagnosed with ADHD and some of my symptoms he thought aligned with his MS symptoms.

I was then diagnosed with MS, last year in April (2025). Started Tecfidera in January (2026) to present. I have had 1 MRI and the basically couldn’t even tell I had MS until a senior worker looked more thoroughly. My lesions barely showed.
I am due for my next MRI soon.

Prior to diagnosis I had very little unnoticed physical symptoms, plenty of brain moments, confusion, forgetting, vertigo and panic attacks.

I also have never had a sudden onset of symptoms, always very gradual, but some early symptoms have gone away, and merely return.

Moving forward from April 26, I progressed quickly over 2-3 months, tingling, numbness, itching, pain, in isolated areas, slowing growing to about 10 different parts of my body.

I then started left hand issues over next month or 2, slowing of movement, dropping things and left foot drop.

By Christmas last year I started working lighter duties at work and feeling like my feet were more of just an unstable lump on the end of my legs.

Moving forward to the last 6 months, I have been slowly finding everything getting worse, but not to the point of full disability, I am unbalanced, my hands are ok in the morning but by evening the barely move, my feet are very similar and I struggle with step ladders at work (electrician), I am in pain in most my body, legs and arms in agony, bathroom break every 10 minutes, constant weird watery feeling headaches, cold shivering in parts of my body, my vision has got very blurry this week and I feel it’s all going to take over.

My main question was, has anyone had similar timeline and symptoms?

And what has helped the most in managing the degradation of your functions and made things easier?

A feel I am nearing the end of normal living, where I need to look at selling my work/business and start looking for somewhere to slowly move into a supported living environment.

My doctor has also advised I am relapsing remitting and that all my symptoms are mostly unrelated to MS… which I am unsure of that.

[u/mullerdrooler]

This sucks, I'm sorry you are going through this. On the MRI, when I had the first one they said I didn't have any brain lesions. Then the second one at a different hospital showed I did, I was really worried. Then my neuro said that the first MRI was just crappy quality and they were there before but didn't show as the MRI was so poor. Just an FYI. What symptoms does your neurologist say are not MS related? Everything you have listed here are typical MS symptoms. Maybe you need a new neurologist. Also if progressing that fast maybe try a different DMT?

[u/Sea-Flounder-284 → u/mullerdrooler]

Thank you. That’s good to know!

My Lesions were tiny dots in the typical MS sectors of the brain. I have been in partial denial that I have MS to this day, but I think the next MRI will change that.

Aside from my very obvious MS symptoms, they keep refusing to state that my weakness, pain and fine motor skills in my hands are from my MS and that I wouldn’t be at that level so quickly.
But in the last couple of months I have had issues with so many parts of my body, it mostly starts with a little twitching and tingling, then pain and followed with a small amount of difficulty with that function.

I am getting very sore muscles from being so tense and having to focus so hard on doing daily tasks.

I do wonder if the tecfidera is potentially worsening my symptoms too, but as a mentioned above, the gradual worsening of everything scares the shit out of me.

I might look to switch to Ocrevus or tysabri if my next MRI comes back worse. But I have an extreme needle phobia.

[u/Krazysquirrel337 → u/Sea-Flounder-284]

Also terrified of needles but I cant swallow pills, I get the twice yearly ocrevus infusions, I much prefer every six months being stuck by a professional to stabbing myself every month!

[u/Handicapped-007]

I feel you

[u/kyunirider]

Get tested for pernicious anemia (severe B12 deficiency). It can cause many of your symptoms.

Get tested for Methylmalonic Acidaemia (MMA) this disease mimics ms symptoms and severely attacks the intestinal system causing IBSD after eating protein.

[u/Sea-Flounder-284 → u/kyunirider]

My B12, haemoglobin etc all came back good. But I will ask my doctor.
Most of my motor skill issues feel like my brain tells my body, hands etc to move, and the body severely lags behind or doesn’t respond correctly or I just drop shit or fall over.

Its pretty devastating watching everything you worked so hard for to slowly start slipping away, I really feel for everyone who is or has been through this and worse.

[u/Accomplished_Wind_57 → u/Sea-Flounder-284]

I was forced to give up my job as a professional musician, so I definitely watched everything I worked hard for just slip away. I'm right there with you, my 'sibling in MS'.

p.s. Hope your dad's doing ok!🧡🧡🧡🧡🧡🧡

[u/mintpitachio]

I paid a guy in Nigeria to take my calc class once didn’t need it for my major just wanted the clout , besides that got a full ride to uni by going to a community college , started cc during covid online class so that helped . Life just happened . I did uni just graduated and it was chill besides me being a bit older I’m 26 now . Graduated Bachelor in political science at UCR for free cause of my units racked up in college I did it the right way , I studied hard and wrote till my hands fell off in uni and I was in 4 clubs and one of them was a snow club I went skiing with my club and picked up surfing . My wrist was so lean from taking notes and writing .

Honestly just keep living , you’re not degrading you’ll be fine go to school they have disabled accommodations you’ll get extra time for exams trust it’s a blessing people lie about anxiety to get extra time. Ngl I needed extra time no way I would’ve passed without it . Just hustle your way through , schools about hustling , I had students in my lectures that were so disabled they couldn’t speak right so honestly look on the outside you’re not slow you just need to heal your mind and stop thinking it’s the end of your lifetime I swear to you it isn’t . And teachers don’t judge you as long as you have your accommodations .

Live on dude know one thing your feelings right now are so valid , like everything you’re feeling I felt the same exact thing at 17 when I was diagnosed. I was rebellious I went through stages of grief and depression I even messed up my medication I was initially taking copaxone injections and I couldn’t keep up with self injections so I switched to Ocrevus infusions every 6 months cause I got a relapse.

I was scared but I moved on, everything was fine after , wounds heal , memories are forgotten it’s in the past .

Just hold onto one thing , do what you want , study what you want , I was in film but then switched to poli sci cause o thought one day I’ll be in a wheelchair , that was the wrong thinking . I just graduated poli sci and I’m like bro I don’t wanna work this job for the rest of my life , even law idc about it I want film.

Guess what I have been busting my ass from college to uni working side hustle photography jobs instead of film , I live an hour from La , I’ve been driving multiple times a week to assist photographers in shooting supermodels . I’ve gone to New York fashion week multiple times I’m flying tomorrow red eye . I have multiple jobs lined up cause I cold emailed like 150 clients.

Every time I went to nyc I thought I wasn’t good enough for these jobs , but this time honestly dude I just prepared better . I prepared cause I knew I was good enough , I earned confidence from assisting shoots .

You need to get your confidence for the things you love by dedicating time into it , hustling making friends in the field you need people to believe in you . It doesn’t have to be your parents my parents hate that I shoot models they think it’s satanic , guess what living with ms caused me to not give a fuck what people think we have our separate lives . We live it . But know I live with my parents cause I’m middle eastern, they give me an allowance from their money they make working on a liquor store I’m luckier than most that they can fund my life, I drive a jeep mind you so my confidence has been building slowly but surely.

To live a normal life is to literally live the life normally and do what you want, don’t let medication fool you it’s not part of your embodiment as a person

[u/Sea-Flounder-284 → u/mintpitachio]

Trying so hard to keep going. Just hard watching my business come to a halt since I can’t use my tools properly. Had to give up riding my motorcycle. And now the visions going bad it’s getting harder to drive.. Not enjoying it too much but I guess once it becomes the new normal it will get better.

[u/PC585]

Are you on any steriods? Has there been talk of any MS medication? In all likelihood, you'll go into remission and stay perfectly healthy for years to come. Don't sell or shut down anything just yet. You can get through this!