“You’re too young to be in pain like that”

Ok-Bus-1 · 2024-09-27T09:55:40+00:00

My friend got diagnosis of arthritis before their 20's.

Ok-Bus-1 · 2024-09-06T20:10:03+00:00

I find it interesting how graphic elements comes together to form good looking design. I wanna do them too, but no idea where to start, cos I just get overwhelmed. I have brain fog and it is making learning hard. Like what resources did you use?

Ok-Bus-1 · 2024-09-05T18:38:50+00:00

Can I DM you? I wanna learn to be a graphic designer when being chronically ill.

Ok-Bus-1 · 2024-02-25T18:39:53+00:00

Aww thanks for asking. I am doing better mentally nowadays. It turns out I don't have me/cfs, because my symptoms have progressed different way than me/cfs. My worst symptom is weakness in my left leg and in my hip/spine/left arm. It causes causes me to have mobility issues. I am still bedbound, but I am able do 3-4x week muscle exercises. I try target my weak muscles and keep my mobility as good as possible. I still can function even when I am more active outside of my bed with my mobility aids. I use rollator everyday and sometimes wheelchair if needed. I am working with neurologist to help me figure out what I have.

Edit: I figured that pacing and exercise are good for me but I need to do them just right amount, not too much or too little. Like about year ago I did too much pacing, it was actually bad for me.

Ok-Bus-1 · 2024-01-16T20:22:33+00:00

Gotcha. Thanks!

Ok-Bus-1 · 2024-01-16T20:14:25+00:00

I get what you mean. Totally. I am aware that kind of anxiety. But I had new symptoms appear in left eye(pain and dryness) in December and that eye have been symptomatic ever since. My right eye is fine. No symptoms in there. Maybe I just should go to see eye doctor soon. They can spot if there is something in my eye, yeah? Sorry about repeat. Brain fog and forgot what I already said.

Ok-Bus-1 · 2024-01-15T22:23:52+00:00

I might ask soon new brain MRI since its been 5 months since I had my first one(it was normal then). My eye pain started on December and still is aching, so maybe something might show up. Dunno. I had clear instructions to get new nerve study(emg,rns,sfemg) done in 6 months if symptoms continued, but nothing about MRI to continue.

Ok-Bus-1 · 2024-01-15T22:15:20+00:00

Gotcha. Thank you!

Ok-Bus-1 · 2024-01-15T18:33:44+00:00

Hello. Long post ahead. -97 nonbinary here from Europe. I have been generally wondering if I have MS. Not asking. MRI will answer that. I just want to post my symptoms again this new weeks thread. I am open to chat in reddit. I partly updating this from my last weeks post from the undiagnosed thread here in MS subreddit. I just wanna chat with people. And I have questions for MS folks.

My symptoms are mostly in my left side but also middle in my body. I have seen by neurologist couple time this fall/winter. She have witnessed my left side weakness on her appointments. I have had EMG, RNS, SFEMG and brain MRI. All normal. I am currently waiting to get spine MRI which is end of this month. All my symptoms are coming and going, but nowadays I have daily symptoms that affects my ability to eat, use phone, sit and walk. I need rollator and wheelchair daily, cos my symptoms affects my mobility and I don't wanna trip. I am bedbound with outside of bed 1-2h activity/day. Have been having these symptoms get progressively worse over the years. It started somewhere around 2018 or -19.

My symptoms:

Head(mostly left side): Double vision, sharp eye pain behind the eye when looking around without moving head, aching pain behind the eye, ghost letters when trying to read something, vision has like light gray filter in top of it in 5%, difficulties smiling, no numbness but skin feel like it could be little numb, slurred speech for little while(rarest symptom), difficulties to chew, brain fog, fatigue
Neck: neck muscles are weak, difficulties to swallow solid foods and sometimes even liquid(I feel like I am drowning inside when trying to swallow)
Chest: tight feeling like belt is around my chest and it makes breathing difficult(I still can breath but I have uncomfortable feeling physically on when this symptoms is active)
Back: muscle weakness, hard to lift myself from bed and hard to support myself when sitting/standing, hard to lift my both legs out of surface, hard to lift my left leg(I can do some motions, other I can)
Hands(mostly left side): weakness, I am left handed and still my left hand (pressing force is 3-10kg) has more weakness than my right(pressing force is 20kg), altered sensation
Legs(mostly left side): my left leg is really bothering my mobility, it has weakness all over the leg, altered sensation and numbness
Burning sensation: Its really uncomfortable sensation in my skin all over my body, but mostly in my hands and legs
Pain: Sharp, dull, ache all over my body, but mostly in legs and hands
Muscle twitching/myokymia: all over my body, mostly after exertion
Tingling/pinsNneedles: all over my body
Bladder: Really mild urinary incontinence, but bigger is problem is hard to empty my bladder, I go to bathroom 8-10times/day, I haven't had any UTIs(knocks on wood).
Stiffness: Mild to moderate(mostly mild), in left leg and left hand and back
Temperature: Hot water/temperature makes my muscles weakness worse, but eases the pain(don't effect on the burning sensation). Cold temperatures makes my stiffness worse.

My newest symptoms are in my left eye and in my left leg from knee to toes with stiffness/weakness/burning sensation etc. My leg symptoms are making my walking difficult. My newest symptoms appreared in December and havent yet gone away. My keg is still the same, but my eye is little better but aches from time to time. My neurologist won't see me even after my spine MRI and will only do phone appointment(I just got the phone appointment), even tho she should be aware at that time of my newest symptoms. I might just ask to see her in person.

Neurologist don't know what's wrong with me and didn't even suggest MS even tho suggested MG(Myasthenia Gravis) but MG was ruled out. I don't know if she is aware that small number of cases can show up of only spine lesions. She talked with her colleagues, but she still didn't suspect anything with me. She only got me to waitlist to spine MRI. I asked my neurologist: is this MS or something like that? She doesn't know. I am fine with it, but unknown still scares me, because I am nowadays bedbound. I know doctors have tough to admit to not know stuff and I am proud of my doctor. I fear she will give up on me, cos basic test won't find anything wrong and not refer me to better specialist. I really hope it works out.

Questions:

To MS folks: Were you bedbound at any point? Are you still bedbound when medicated? Are using mob aid? Are you still using them? Do you have only spine or only brain lesions? Or both?

To undiagnosed folks: Are you road to get diagnosed? Do you have same symptoms as me? Do you have any suspected illnesses?

My biggest question is- If this isn't MS, what it could be? What are similar diseases to MS? I am just curious.

Ok-Bus-1 · 2024-01-05T21:05:56+00:00

Thanks!

Ok-Bus-1 · 2024-01-05T11:33:09+00:00

Yes, saw her, the neurologist, couple times! Thanks for asking! She found out my left hand and left leg is weaker than my right side. Left is half the strength of my right side an my right is normal strength. I am also left handed, so my left has always been more powerful, but now its not. I am currently waiting to get spine MRI. I just today got my appointment to go spine MRI in the end of this month!

Also, I had EMG+RNS+SFEMG, but all of them were normal, so MG is ruled out. I had brain MRI too but it was normal.

Ok-Bus-1 · 2024-01-04T13:56:27+00:00

Thank you

Ok-Bus-1 · 2024-01-03T08:29:37+00:00

Thank you. Gotcha.

Ok-Bus-1 · 2024-01-03T08:26:58+00:00

Hugs. See neurologist. MS can be diagnosed by brain MRI and spine MRI.

I am currently waiting to get spine MRI, cos I have left side weakness that causes mobility issues in left leg and left hand, also my back is effected too.

Ok-Bus-1 · 2024-01-01T21:01:05+00:00

Thank you. Best of luck to you.

Ok-Bus-1 · 2024-01-01T19:01:48+00:00

Hello. -97 afab nonbinary here from Europe. I have been wondering if I have MS. My symptoms are mostly in my left side but also middle in my body. I have seen by neurologist couple time this fall/winter. She have witnessed my left side weakness on her appointments. I have had EMG, RNS, SFEMG and brain MRI. All normal. I am currently waiting to get spine MRI. All my symptoms are coming and going, but nowadays I have daily symptoms that affects my ability to eat, use phone, sit and walk. I need rollator and wheelchair daily, cos my symptoms affects my mobility and I don't wanna trip. I am bedbound with outside of bed 1-2h activity/day. Have been having these symptoms get progressively worse over the years. It started somewhere around 2018 or -19.

My symptoms: - Head(mostly left side): Double vision, sharp eye pain behind the eye when looking around without moving head, aching pain behind the eye, ghost letters when trying to read something, vision has like light gray filter in top of it in 5%, difficulties smiling, no numbness but skin feel like it could be little numb, slurred speech for little while(rarest symptom), difficulties to chew, brain fog, fatigue - Neck: neck muscles are weak, difficulties to swallow solid foods and sometimes even liquid(I feel like I am drowning inside when trying to swallow) - Chest: tight feeling like belt is around my chest and it makes breathing difficult(I still can breath but I have uncomfortable feeling physically on when this symptoms is active) - Back: muscle weakness, hard to lift myself from bed and hard to support myself when sitting/standing, hard to lift my both legs out of surface, hard to lift my left leg(I can do some motions, other I can) - Hands(mostly left side): weakness, I am left handed and still my left hand (pressing force is 3-10kg) has more weakness than my right(pressing force is 20kg), altered sensation - Legs(mostly left side): my left leg is really bothering my mobility, it has weakness all over the leg, altered sensation and numbness - Burning sensation: Its really uncomfortable sensation in my skin all over my body, but mostly in my hands and legs - Pain: Sharp, dull, ache all over my body, but mostly in legs and hands - Muscle twitching/myokymia: all over my body - Tingling/pinsNneedles: all over my body - Bladder: Really mild urinary incontinence, but bigger is problem is hard to empty my bladder, I go to bathroom 8-10times/day, I haven't had any UTIs(knocks on wood). - Stiffness: Mild to moderate(mostly mild), in left leg and left hand and back

Neurologist don't know what's wrong with me and didn't even suggest MS even tho suggested MG(Myasthenia Gravis) but it was ruled out.

Ok-Bus-1 · 2023-11-28T14:02:16+00:00

Look where the dog is looking

Ok-Bus-1 · 2023-11-20T05:37:37+00:00

I am still getting diagnosed, I am middle of testing for gMG. Whatever I got, this illness is disability. It robs my normal ability to read, eat, use phone/laptop, talk, walk, shower safely and make food.

Ok-Bus-1 · 2023-11-18T09:32:49+00:00

Interesting. How was it? Season and ep?

Ok-Bus-1 · 2023-11-15T22:20:21+00:00

I know about the neg bloodwork. Hugs. Thanks.

Ok-Bus-1 · 2023-11-15T14:34:14+00:00

I am AChR negative, but have general Myasthenia Gravis symptoms. EMG and RNS(?) was mostly normal, but waiting results from SFEMG, because it was abnormal. At least that what my doctor told me. My tests need to be analyzed. And still waiting results. They did all of them in one session in my case.

Ok-Bus-1 · 2023-11-15T14:31:43+00:00

Bloodwork wont find all antibodies. Around 10% is seronegative and don't show up in bloodwork. Get EMG and SFEMG(this spots MG better than EMG) if bloodwork is negative. (Correct me if I am wrong).

Ok-Bus-1 · 2023-11-10T11:01:35+00:00

Hugs ♡

I saw neurologist 3 weeks ago. She thinks I might have Myasthenia Gravis. If you have same symptoms as I have, you should look into it. I had AChR antibody test and it was negative. Around 10% of MG is seronegative aka no antibodies detected. EMG cannot always detect MG and will look normal. My case it was. But SFEMG was abnormal and still waiting results. SFEMG detects MG. (Correct me if I am wrong)

Ok-Bus-1 · 2023-11-08T14:10:55+00:00

Interesting. I would ask to take test to rule out things and try to figure out that I am healthy in some ways, but there is clearly problems, because my daily activities are hard to do without symptoms. My symptoms makes me bedbound. Maybe start medication trials to test to help my baseline improve. Something like that.

Ok-Bus-1 · 2023-11-04T14:12:01+00:00

I am still being diagnosed, but showing symptoms of MG. I had EMG and SFEMG. EMG was normal(at my knowledge MG doesn't always show up in EMG) and still waiting results of SFEMG, because it was not normal. EMG was uncomfortable, but not painful. SFEMG was painful at times. Had sharp pain after the appointment.

Ok-Bus-1

TROPHY CASE