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Feeling alone and afraid

Hi. So my doctors say I “potentially” have MS but that we have to wait and retest to see if I have/had multiple episodes before a diagnosis can be made. Neurologist told me not to freak myself out by reading a bunch about MS on websites, but did suggest looking for support from people with similar problems, so here I am.

I have so many vague symptoms it’s hard to say when this all started. But I really started to think something was off about 2 months ago when I started having facial spasms. At first it was a tic just under my right eye that came and went; thought “well probably just an anxious thing, I just need to relax more.” No big deal. Then the muscles at the right corner of my mouth began to twitch as well and it became an every day thing. Then instead of just twitching, the whole right side of my face would sort of seize up for hours at a time, pulling the right side of my mouth into a silly looking frown, and that side of my face felt like I’d been injected with novocaine. It also feels like my right eye is being sort of tugged on, so there’s this kind of burning pain around it.

Not long after that, I noticed my right leg felt… wrong? When I walked, my foot was tilting toward the outside so I was kind of walking on the outside edge of my foot. I could correct it consciously, but then the leg started to feel numb, and after walking it would become very weak and the muscles would jerk visibly, sometimes painfully. I am (was) in pretty decent shape, and I’ve always been able to walk for miles and miles with no problem, but now suddenly-- not every day, but frequently-- walking no more than half a mile leaves my right leg feeling like jelly. Consciously correcting my side-of-the-foot-walking becomes very tiring and eventually painful.

Also started feeling electric-shock-like sensations and sometimes violent chills through my body. Pins and needles feeling in my right side of face, arm, and especially leg. Leg frequently feels like it’s fallen asleep, that is had the circulation cut off, when I haven’t been sitting on it or anything. Walking down the stairs, the leg just suddenly folded under me and I fell and bruised and bloodied my face and shoulder. I’ve taken to walking with a cane on the worst days, which in addition to the very obvious facial spasms, draws gawking and questions, which is tiresome and embarrassing. My right arm has also started to get the same way; I usually braid my hair, but some days holding my arms up to do so, it gets too exhausted to continue and I just can’t braid it that day no matter how I try.

Speaking of tiresome… oh, the fatigue! I sleep ten hours a night on average and then still need a two or three hour nap in the afternoon. I get so tired I just literally can not get up, talk, or even think straight. Trying to read or make plans gets so hard sometimes it feels like my brain literally aches, and I get really irritable, which is unusual for me. I run an errand and come home feeling like I ran a marathon instead, and lie on my face in bed for the rest of the afternoon.

I’m 30 and a female of Northern European descent so I guess that puts me right in the MS crosshairs. I’m not close with family and don’t know much of my family medical history. I’ve been very reluctant to tell friends and associates what is going on because I don’t want to frighten them and have them pity me, or, alternatively, sound like a hypochondriac. I keep hoping I’ll wake up and find that all of this has gone away. I already struggle with another health issue and just scrape by financially, and I’m terrified of losing my independence and self-sufficiency. Part of me is dreading the worst case scenario and the other part is saying it’s probably all in my head. I wish I just had answers now, but I know that’s not how it goes. Anyway… that’s my rant, sorry so long, my thanks to anyone who made it through. I appreciate the opportunity to vent about my issues.

Hi Juliana, so sorry you’ve been going through all this. It is very unsettling to say the least and so frustrating waiting for a diagnosis. We’re here for you. You say retest, so have they done an MRI?