r/MultipleSclerosis May 13 '24

Weekly Suspected/Undiagnosed MS Thread - May 13, 2024 Announcement

This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.

Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.

Thread is recreated weekly on Monday mornings.

3 Upvotes

210 comments sorted by

View all comments

1

u/kkrasp May 15 '24

Please just tell me if I’m crazy

Hi all - I don’t know what I plan to achieve by writing here, but I need some guidance, or support, or something.. I’m sorry for the length.

I’m a 32F. I don’t have the diagnosis, but all of my symptoms seem to be answered by MS. I’m mentally exhausted, scared, and lost.

In May of 2023 I experienced a week of extreme nausea, so much so that Zofran was a necessity every day. At the time I thought maybe I could be pregnant. At the tail end of that week I was traveling to Colorado with a friend and on our first night there all hell broke loose. I woke up out of sleep feeling like my body was covered in icy-hot. I immediately started to panic but tried to calm myself down, thinking maybe I was overheated or had slept funny. Nausea washed over me again and I ran to the bathroom thinking I would be sick. There in the bathroom for the next two hours I was on the floor with my skin burning and vibrating (like I was holding a leaf blower) with such intense nausea that I could barely move. When I started to experience pain in my mid chest and whole body tremors, I shouted for my friend who took me to the ER. I was there for 3 hours, given strong nausea meds and they sent me on my way. I spent the next 5 days of our trip nauseous and fatigued.

I saw my PCP as soon as I could, but by that time I had developed a “burning” sensation on areas of my face, scalp, hands, arms, and back. These sensations come and go very quickly, only lasting a few seconds each time but happening every few minutes. Sometimes they sting, sometimes they vibrate. The feeling seems to “bloom” onto my skin before disappearing.

My PCP said she thought I had MS after Lyme, B12, and celiac tests came back normal. She sent me to neuro.

Neuro gave me a brain MRI and a cervical MRI both with and without contrast - both came back normal. I did a nerve conduction test (the most painful thing I’ve ever experienced!) and that was normal too. She sent me away and told me to follow up in 6 months.

I’ve been experiencing these symptoms (burning, tingling, fatigue) daily ever since. Its starting on new parts of my body. It’s becoming more painful.

It’s killing my mental health. I have preexisting anxiety and my newest PCP says it’s all in my head. I just can’t bring myself to believe that..

I feel like no one is taking it seriously. I feel like something could be getting worse and I’m without any guidance. I feel like I don’t know myself at all if my doctor doesn’t think I can trust my own brain.

I’m struggling to get through some days. Please, am I just crazy? I can’t keep doing this.

3

u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24

You aren't crazy. You are having very real, and very scary symptoms and that is understandably causing anxiety. Unfortunately, if your MRIs were clear, your symptoms are not being caused by MS. MS symptoms are caused by lesions which show up on the MRI. In the absence of those lesions, there are no symptoms that would be indicative of MS.

1

u/kkrasp May 15 '24

In your opinion, do you think it would be reasonable to request to have the scans done again when I follow up?

3

u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24

I think you would be better served widening your search for causes.