@jasper423 

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jasper423

Diagnosis Help

Hi everyone, not diagnosed yet but I'm pretty positive it is coming. Man--that was not easy to type or admit to myself! So a little backstory: I went to my GP in December 2018 with multiple complaints (mostly GI issues and horrible vertigo). She had me go in for an MRI, they found a small lesion, and then she referred me to a neurologist. My first visit with my neurologist (January 2019) consisted of me telling her my symptoms, and then she poked and prodded me for a good ten minutes. Basically told her I was having the terrible vertigo (felt like I was drunk 85% of the time, for like 4 months straight) among other symptoms (pins & needles all over, extreme fatigue, and a few others). She had me do a TON of blood work (I'm talking like 17 vials of my blood at once), and everything turned up completely normal. She chalked up my vertigo to an after-effect of a viral illness I had the year prior. She told me that she couldn't diagnose anything right now, but if I had any other symptoms to let her know, and we'd follow up in a year. She also mentioned MS, and that it was still possible I had it--she just couldn't diagnose it right then. Well, that year has passed and I have new symptoms. I was diagnosed with Celiac Disease and Autoimmune Chronic Urticaria last year (yippee, autoimmune diseases love friends), but other than that all my previous symptoms quieted down. At the beginning of January 2020, the pins and needles started up again, and then my left tricep area went numb. But, not like a normal numb feeling--it hurt. Like, it felt like I had an awful scrape, and I was rubbing it with sandpaper every time I touched the area lightly. Then after a couple days it moved to my right hip. Then that stopped and it moved to my left forearm. And now it's on the right side of my lower back. It's the most bizarre thing I've ever felt. I should also mention that what felt like overnight, my glasses prescription got worse (not much though). During my eye exam, doc told me I had a scar on my left retina. Also, every couple of months I had noticed I'd wake up with this tight pressure around my ribcage. Every time I tried to breathe deeply, it was really painful. This would last for like half a day or so. Lastly, I've just been so constantly tired it's been hard to get myself to simple, everyday tasks. I get plenty of sleep and make sure I give myself time to rest, but nothing seems to be enough. Just today, my neuro gave me the soonest possible appointment for a follow up MRI/consult after I told her my symptoms. She sounded urgent which didn't make me feel much better about it. Does anyone have any experience with any of these symptoms? I know it's a long shot because I know MS affect everyone in different ways--and honestly, I'm more so writing this post in an effort to just get it all out there so I don't have to harbor it any more! I'm curious how other peoples' diagnosis process went--like how many visits/changes in MRI does someone have to go through to get diagnosed? It's so tough to wait. Thanks!
@Lisa_Morghan

Hi I'm Lisa I understand your crazy wait the only thing to keep in mind MS is a very difficult diease for dr. Neurologist to diagnose!!! For years I mean YEARS they dr. did not know what it was !!! My oldest sister had difficult time with walking she was early 20s so no medication!!! Shes now 64 and bedridden!!! Go get help find that right doctor "google" get answers keep as healthly as possible take yoga get massage acupuncture!!! Your the patient you have rights "Always" stay strong peace be with you ⚘

@Vixen

Hello @jasper423. Sorry you are going through all this. It may or may not be MS, but we can all relate to that terrible void of uncertainty before any diagnosis. I don’t think MS would usually be diagnosed with one episode and one lesion, as happened a year ago. But an MRI will certainly pick up any new lesions. For most people, the seal on a diagnosis comes after a lumbar puncture, so at your consultation the neuro might refer you for this. Or not, depending on the MRI. When you see the neuro, take a consise list of pervious symptoms with a timeline. Think back over time about any symptoms which could potentially be linked to MS, such as vertigo, difficulties with swallowing, periods ofcognitive fuzziness, things like that. The good thing is, you are in the system, it’s relatively early on, and you seem switched on and proactive. So stay strong, and post any updates so people can continue to support and give advice 😊