Hi all, I posted something else (now deleted don't worry) but the tags didn't work so I'm going to try again, I just kinda need some advice.
I've been having some mild (if uncomfortable) neurological symptoms and my most likely disease candidate is MS - I know it as a disease that presents with some pretty unspecific, often transient neurological symptoms. Although from doing research, my symptoms don't necessarily sound like how people say their MS presents... so I don't know, I'm not here for a diagnosis, but I'm very willing to listen if someone has ideas beyond MS.
For the past three years (this will be year 4) when the weather gets hot I get:
-a period of serious fatigue lasting about a week or more
- fatigue coincides with super sensitive hands and burning feet that then progress to "stocking, glove" pattern numbness of the arms and legs (both sides), as well as numbness but not loss of function of the face (I describe it as in a clown pattern - around the mouth and eyelids, and some on the cheeks, jaw and temple). All of this is bilateral.
-I also experience other things like a burning mouth, more unique sensations like a cold trickle up the sides of my legs and pinprick sensations (especially in the shower).
-My hands become slightly more clumsy and I struggle more with fine motor control
-I have muscle weakness but only in certain positions, mostly when lying down.
These other things last longer than the fatigue - usually for a month. I think this kind of 'cycle' can happen multiple times depending on how long the hot period is. I had usually only been experiencing them around Christmas and early Jan (summer here), but this year I moved to a region that is hotter for more and the year and I had another 'episode' in march just after moving in Feb, and am having one now in october - I don't know if it might last longer either.
- I also get some cognitive fog, including mild confusion and inability to make decisions, but I think this only lasts a short period. I have had general cognitive problems most of the year this year, but I do have other explanations for that.
-I have ongoing ringing or humming tinnitus as well. no clue when it started
-This time while all this is happening, I am also having muscle twitches - mainly of the left eye, but occasionally of my right hand or left leg - the twitches have been ongoing for a few months, not worsening, not associated with weakness, and I don't actually believe it's related - but I'm just covering my bases.
I don't have: diabetes, B12 deficiency, vitamin D deficiency, a history of back injury, or coeliac disease
I do have: a history of idiopathic intracranial hypertension (a benign disorder which is in complete remission), depression, a functional movement disorder (tics - long story), ADHD, and anxiety.
I must say that I avoided doing any research on my symptoms until this year... a week or so before I'm writing this. I have tried using coping mechanisms that I learn from therapy to deal with my symptoms, they don't work, but they also don't work for my functional tic when it shows up. I am not convinced that it is MS but I am frankly afraid it might be - or some other neurological disorder - and it's important for me to know.
I would actually prefer that it is all anxiety, but if it was I would expect to experience these symptoms at times when I experience high anxiety or stress, which I just don't. I experience the whole gambit, palpitations, headaches, nausea you name it, but not numbness or odd sensations. I have had anxiety and depression for almost 20 years, I would like to think I am well acquainted with my symptoms.
Either way, I have had it bite me in the bum before that I labelled an odd symptom that I found hard to describe as anxiety and then it turned out to be something real. I want to make sure that I have covered all my basis before writing this off and missing something that I could've got help with before it gets worse.
The big worry is that I won't be experiencing symptoms when I can get in to a neurologist to get it checked out - and nothing will show up in any test and it will go down in the books as all anxiety - which then will make it harder for me to receive the care I need if it does worsen.
This makes me think I shouldn't get any testing done and just assume it's anxiety until something worsens or I get a really indicative symptom (like Lhermittes sign or optic neuropathy).
Does anyone know if there are signs of MS when the disorder isn't active? Should I just 'wait and see'?
I am seeing a doctor every time I get these symptoms, so that it is on the books, but I haven't asked to see a neurologist or anything - and I always pass their super basic neuro test. I haven't been this time yet, but I do have an appointment for a few days. I quite like my current doctor and think they will refer me to a neurologist if I ask - but is there any point if I may not be having symptoms, and they are in general hard to explain and invisible (I'm not even sure if I know what they all are)?
it's okay if no one can give me any advice, sometimes I just need to get this stuff off my chest, and I'm happy even just having someone to share it with - so thank you!