#symptoms - Shift.ms

@Jpetridish

20 Jul 2025 02:33 EditedLast reply 20 Jul 2025 03:53

Hello, so I have a question or just want anyone’s opinion or help if possible please. I first had optic neuritis in 2021, was put on steroids and eventually got better but did leave some perminent damage. I had my first baby in 2023 and after I started to slow down breast feeding I started to get some interesting symptoms. Every morning my hands would be extremely itchy not like dry skin, but from the inside it was driving me insane it was every day and then I started getting random pain either on the top of my head like a bad bruise or on my back which I even thought was shingles, cause it was so painful to the lightest touch, but there was nothing there I even went to the doctor and in about a week that pain subsided The hand itching and the pain on my head continued though. In January I had noticed signs of optic neuritis happening again, but in my other eye, I went to the doctors right away and they had sent me to the emergency room. I was put on Iv steroids and got an MRI I was there for about four days. They saw some white matter lesions in my brain, but it wasn’t clear because of movement. They then did a spinal tap which came out clear. I had gone home and had to follow up with a neurologist about a week after I got home? I had horrible symptoms I was holding my child and my knees gave out my hands were hurting. I was twitching all the time I could not sit still it was worse when I was laying down at night my body just would not stop moving and at some point I could not feel my foot I felt like it was in an ice bucket. I was extremely tired, and I would get random goosebumps in blotches on my arms for no apparent reason I started getting some bad headaches too I then woke up one morning and I could not lift my left arm. It was like it was asleep. I would get pins and needles and different parts of my body also but the muscle weakness in my left arm was horrible. I could barely hold anything. It is still like this to this day, but not as bad if anybody came up and touched me without me, knowing my whole body would spaz out almost like my reflexes were on high drive I have seen three different neurologist since the first neurologist is convinced I have MS the other two which I actually liked better and our MS specialists keep saying I may have it. They did a repeat of my MRIs and again had some white manner lesions in my brain, but they were identical and not in the usual spots where MS lesions would be so they am holding off on fully diagnosing me and want to wait and repeat and see if there are new lesions in the following months. I have not been able to work since since I have a physical job I have good days and bad days if I get sunburn the very next day my hands feel like they’re in a vice. The pain is horrible. I want to know what everyone thinks do I have MS are they just trying to cover their butts and wait or what

First posted on the Shift.ms app

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@Jimmy369VT

16 Jul 2025 15:55

Hello everybody, I am Jimmy. I just found this group and a little bit about me. Both biological parents were diagnosed with MS mom in her 20s. My dad and his 40s I have learned to watch for signs and symptoms, but I put them off thinking it can’t be happening to me it skips a generation And then I found out my dad‘s little sister was diagnosed and a cousin that is only two years older than me was diagnosed and I decided my wife being a nurse I might as well not put it off anymore because my body was getting worse. I have lost Feeling in both my feet. My limbs go numb for no reason I cannot stand or sit for long periods of time my bladder does not function the way it should. My balance isn’t the greatest anymore. I am pretty much going through all the same problems. My parents went through And I know I should listen to the neurologist and do everything but it just feels like he already knows he just wants to make sure that it isn’t a disease that mimics MS I know I just have to be patient and do everything but my body is in so much pain sometimes and I can’t sleep But then when I am able to walk around, we have sand spurs here in Florida. I can walk across my yard and my dog can feel them more than I can when they get stuck to the bottom of our feet and when I tell doctors and neurologist that both of my parents Suffered MS, their eyes light up like I’m assigning it to experiment and tell me that it is rare to hear that the neurologist I have studies MS and he says this was the first time he has ever heard of both biological parents having MS. He even showed me studies And it’s either a grandma or a grandpa Paw or a mom or a dad and then I was told I have a 12 to 15% more likely chance of having MS at first I was frustrated and then I was just depressed and then I realized if my parents could deal with it for so long and keep their positive attitude even though their bodies were breaking down And rejecting the things they wanted to do. I have decided that I will listen to the doctors but with everything else going on with me some of the medicines for it I can’t even take because of heart condition conditions or colitis. I appreciate being accepted to the group and I just wish there was something like this for my parents back in the 80s and 90s

First posted on the Shift.ms app

Deleted

@Tehya1026

16 Jul 2025 12:44Last reply 16 Jul 2025 16:04

Diagnosis drama

Hi I'm new here and looking for info, advice, and any help possible. Been dealing with the autoimmune battle for over 20 years. First they sent me to a Rheumatologist and he thought I had Lupus but then decided a year later that I didnt have enough positive markers for it. After years of telling my...

First posted on the Shift.ms app

6

@chrissydoz

15 Jul 2025 23:25 EditedLast reply 16 Jul 2025 00:39

Just signed up here. I was diagnosed last fall and started on Tysabri in Dec. So far it’s been really good. My symptoms have gotten better (which no one promised me). Lately, some things have gotten worse. Life has been stressful recently and I know that can cause relapses. I’m curious how everyone managed their stress level.

First posted on the Shift.ms app

5

@Tyrus

15 Jul 2025 18:08Last reply 17 Jul 2025 23:54

Time to lawyer up?

After a 35-year remission, my MS relapsed in early April. I scheduled an appointment with a neurologist, but the earliest available was weeks away. In the meantime, I reached out to my PCP, who immediately set me up for a three-day Solu-Medrol infusion. I told him that’s what had worked best for me ...

11

@MyelinMermaid

15 Jul 2025 08:45Last reply 16 Jul 2025 18:46

'Reactive Depression'?

I've been suffering the worst flare ups I've had since my symptoms started and it's getting me really down - I don't have confidence to things like go out on my own, I just feel like I can't trust my body. My MS nurse has told me I am suffering from 'reactive depression', does anyone else feel a maj...

, United Kingdom

First posted on the Shift.ms app

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@jennyswan

14 Jul 2025 00:08Last reply 14 Jul 2025 07:29

Weight Loss

I’ve been thinking of going on a weight loss injection. Is anyone on one? Has it affected your MS symptoms? Some friends and fam are saying don’t do it because I don’t know how it will effect me. Others are saying do it.

First posted on the Shift.ms app

10

@ricardo2646

13 Jul 2025 13:46Last reply 14 Jul 2025 07:35

In the know

I watched my mother die of this bastard illness a couple of years ago and I unfortunately now have it to, has anyone been in the same situation where you can feel and see the same progress of symptoms happening to you,it really plays on my mind.Its very frightening

First posted on the Shift.ms app

7

@Juliapinkie1

11 Jul 2025 22:39Last reply 14 Jul 2025 22:34

A "fait accompli"..my new reality?

Heya, Don't know if i have a question, statement or observation. Or all of the above. During these last 2 years, things really took a turn for the worse, ms wise. And subsequently, psychologically as well. No major relapses, but clearly a steady decline. And new meds, which cause side-effects that a...

Amsterdam, Netherlands

14

@Mamaof4

11 Jul 2025 20:37 EditedLast reply 11 Jul 2025 21:38

My radiology Report lacks info of looking for small lesions!!

I'd like you to please look at my MRI report. My MRI was done with no contrast. My Chat GPT has found some small lesions, but my report came back as normal. The person that interpreted my MRI was not a neurologist. I'm going to a neurologist for a second opinion and to see what I'm having MS symptom...

Elm Tree Corners, Canada

1

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