Forum

Feeling Conflicted

Hi everyone! So just a forewarning, this is probably going to be a long post, and it will most likely be all over the place… (Sorry!)

I’m currently feeling very conflicted and unsure on what to do, so I was hoping to get some insight if possible.

So just to give some details about myself, I’m a 24 year old female, physically fit (been running for over 10 years, just completed my first half marathon), good diet, up until last year had never really had any major health issues.

In early February 2017, following a breakup and some other family related drama, I started feeling extremely “off”. I noticed that both my ankles and knees were hurting and felt swollen (I backed off on running when it got worse), had some dizziness, chest pain, brain fog, hyper-sensitivity to everything - especially smell, and just generally felt like I had the flu. I ended up going to an urgent care clinic twice in one week, after about two weeks of feeling unwell, because I was convinced I had either the flu or strep throat (both were going around at the time, and I’ve had both before, strep multiple times). Every time the tests came back negative. The second time I went I told the nurse about the ankle/knee pain, they gave me a steroid shot (along with some kind of sinus infection antibiotic), and sent me on my way. I remember calling my dad crying, because I felt like no one was listening or taking me seriously. I felt like something more was going on but couldn’t pinpoint what… After I got home the pain in my legs got significantly worse, it turned into a radiating pain and I started feeling feverish. I ended up texting a friend around 2 am and telling him what was going on, he came over and it just escalated from there. I started having muscle spasms in my legs, and I just became extremely out of it. The entire night is foggy to me now, but I remember struggling to explain things to the ER staff, I couldn’t remember all of my symptoms, although the muscle spasms were very obvious and worsened when I wasn’t standing (they oddly were fine when I was standing/moving). I do remember feeling extremely self-conscious, I was afraid that the staff thought I was on some kind of drug. (Side note: I like to include that I was never scared/stressed during this, even though it was a scary thing I never really felt scared… I’m of the mindset that freaking out doesn’t help anything, so why?)

They ended up doing a CAT scan, chest x-ray, an ANA panel, and possibly some other things… But it was all negative. The only thing was that I had a slightly heightened WBC count. Prescribed me Ativan (took one, absolutely hated it), (I can’t remember what all they gave me at the ER) and sent me home several hours later. In the 24 hours after, the muscle spasms slowly subsided, but for some reason I’d developed a stutter, and was still super foggy. (The stutter was gone by the next day)

The next week after the ER is also pretty blurry, I had to take a week off of classes, and I mostly just laid on my couch. The fatigue was so bad that I would have to just randomly lay on the floor while doing things, like washing dishes or doing laundry. I was exhausted and foggy and felt horrible. By this point, I was convinced I had either RA, fibromyalgia, or both. My grandmother (who raised me), has both, and while up to that point I had no idea what either of their symptoms were (she hides it very well) I had done research and felt sure that was it. So to cut to the chase, I ended up being diagnosed with fibromyalgia, but I don’t have inflammation in my joints, and as time has gone on my joints hurt less than they did in the 6 months after my diagnosis. (After the ER visit, I started having pain in most of my joints, hands mostly, but frustratingly my symptoms changed/change constantly) I have the tender points in my back, have for years, and that, along with random nerve pain, and some other things I thought were normal, were enough for my rheumatologist to diagnose me.

I have never been prescribed anything, and I have largely managed my symptoms with exercise, good diet, getting enough rest etc. But over the past 6 months, I’ve started developing some different issues. I’ve never been a clumsy person, but I’ve started having issues walking up/down stairs, I feel unbalanced when doing so (I fell walking up stairs a couple weeks ago), I’ve been having problems with weakness in my hands, headaches, burning pain in random places (this has been going on since the ER visit, mostly in my shoulders/back/spine area, but I’ve had it everywhere at this point), eye pain/blurriness (I have reading glasses but I need new ones as my vision has gotten worse), fatigue, I feel tired a lot, despite sleeping well/enough (mostly, I think). In addition, I’ve also developed shakiness/tremors in my hands and feet and I have a tendency to randomly stumble/bump into things/trip. My college major is wildlife biology, and one of my jobs is a field job requiring me to climb in and out of the back of a truck, occasionally hike, and basically just be outside all day. Up until recently, the tremors/shakiness have not been an issue, I’ve been able to hide it. But one day when I was holding something up to my face, I couldn’t hold it still… My friends noticed, and while I’d told them about the shaking they had never really seen it… I drop things more frequently, I have problems with holding things still (like getting my toothbrush wet in the morning, my hand shakes), but sometimes it’s bad and sometimes not. It’s usually bad after a run or after working out, also usually worse in the mornings.

About a month ago I had a 6 month check up with my rheumatologist, and showed him the tremors… I will admit that I tend to be a little tight-lipped with my symptoms, as I don’t always trust them… I feel like I’m somehow making a lot of them up. I didn’t mention this before, but I’ve virtually been alone through all of this. My dad drove the 4 hours to me the morning I went to the ER, and stayed until the next day. But I’m pretty sure he thought that I had an anxiety/panic attack (I don’t agree). I’ve talked about my issues with multiple family members, and they all seem to think I’m fine… Until the tremors came on. I’ve only showed them to a few people (one being my aunt, who I think also has fibromyalgia, we have a lot of similar issues). Anyways, my rheumatologist referred me to a neurologist, who I saw last week… He asked me about my CAT scan, did a few basic balance tests (normal), prescribed me Lyrica and sent me on my way. I felt extremely written off. He barely asked me questions about my issues, (I told him, word for word, that I was having more frequent headaches that felt like I was being stabbed with an ice pick, and he just said “oh really? interesting”) I never used to get headaches. I also get random pains in my face, random muscle twitches in my lips/eyes/jaws, along with everywhere else, occasional stiffness in my hands in the mornings, back/neck pain, and just general random soreness all over. I’ve also had ear pain and tinnitus that comes and goes, mostly in the right ear since this all started but has started in the left over the past 6 months. I have memory issues (worse than before), have trouble concentrating/processing information.

My dilemma is that I don’t know whether I should pursue this further… Part of me wants to get a second opinion on the tremors, possibly have more in depth tests run, but the other part is fed up with it already. I’ve never been a hypochondriac, but I feel like I’ve turned into one and I hate it. Sometimes I feel like there’s something more wrong, and sometimes I feel like I’ve made the entire thing up or have been over-reacting. But then, I’ll have an event like the other day that makes me wonder… I was in a class trying to learn how to use a mapping software, and about 3/4 of the way through the fog hit… It doesn’t happen too often, but when it does its really frustrating. I started forgetting/skipping steps, getting confused on what I was supposed to be doing, and just getting frustrated. I ended up leaving the class early and had to finish the assignment a few days later. I went home and spent the evening on the couch, in one of my out of body/feeling drunk states. Those don’t happen often, but sometimes when I get home, it just hits me all at once. I’ll feel very out of it, unbalanced, forgetful and hazy.

I think I’ve covered most of it. Again, sorry for the rambling… I’m just not sure what to do at this point, accept these issues as fibro, or try to figure out if there’s something else going on? I’ve obviously come to this website because I’m suspicious of it possibly being MS…

Any thoughts, opinions, or advice are welcome!

Hi

sorry to hear your having a rough time of it. I like you have suffered many of the same things and I’m currently waiting to see neurologist number 3!!! My first neuro was screening me for all sorts of rare brain disease etc after I ended up in a stroke ward for a month, with seizures. The second one who I seen was a complete ignorant man who dismissed all of my symptoms and diagnosed me with FND, even though he said ms was present in my lumbar puncture results!! I’m seeing an ms specialist in 3 weeks time.

Have you had an mri of the brain and spine or lumbar puncture? If you feel you’ve been dismissed (like I was) find another neurologist many of them seem to have a god complex!! Ms affects everyone differently and can mimic other illnesses. For your own piece of mind maybe get a second opinion.

Hope this hekps

danielle x

You weren’t kidding about the length of your post!!

You’re not based in the U.K. are you? So some of what we might say won’t apply to you if you are for eg in the US.

It sounds like you’ve never been given any real neurological tests. And you would probably be happier if you had seen a neurologist, been taken seriously and given a thorough neurological work up, maybe including at least an MRI scan of your brain and maybe spine.

So can you be referred, or re-referred as the case may be, to a neurologist? You could write down a list of the symptoms you have experienced, with rough dates, how long symptoms have lasted and whether they have completely gone away or stayed with you. Plus, start keeping a diary of your health, note what happens and when.

Take your (brief) notes with you to the appointment with your GP/primary care provider as well as to the neurologist, to explain what you’ve experienced and when.

You might feel a lot better if you felt that you had been properly checked out and reassured (hopefully) that it’s not MS.

Sue

It seems to me that, when there is vague stuff going on that no one medical seems terribly interested in or impressed by, it is often a good plan to stand back and leave things be. Time is the best diagnostician, after all, and banging your head against a medical brick wall is weary work. Why not just wait for a bit to see what happens? If there was something life-threatening the matter with you, you would know by now, so you don’t need to worry about that one.

If/when something more dramatic does happen to your health that suggests new avenues of investigation, then at least you have something new for the medics to go on. Until then, I would be inclined to try to stay away from Dr Google and get on with your life as best you can.

Alison