Should I just assume anxiety until I get a more serious/obvious symptom?
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!
Hi
Thanks for reaching out.
As we wait for others to chime in with their personal experiences, I thought I'd share a few articles that may provide some helpful information: https://multiplesclerosis.net/managing-triggers and https://multiplesclerosis.net/treatment
All my best, Doreen (Team Member)Going to continue talking to myself for some venting 😀
The pins and needles turned into some really uncomfortable/near painful skin sensitivity that made wearing clothes and getting about my day really difficult. It was all the places I've been numb, arms and legs, but also the right side of my back. It only lasted a few days, and then this whole episode settled down with some numb patches and mild tingling for a few more days and now nothing. It's all over for now -except for some fatigue and muscles aches which might be explained by my iron levels halving (well and truly deficient) in 2 months while I've been taking some heavy duty iron supplements! Not a good thing at all - so more tests, checking for hidden bleeding and bacteria overgrowth in my gut at first, I'll find the results of that tomorrow... I'm considering worming myself in the meantime, I doubt I have any, but best to cover all bases.I don't think the loss of iron is associated with the paraesthesia's - or potential MS in any way, because this is the first time anything like it has happened and the paraesthesia's have been occurring on and off for years. But they might be linked so I have an open mind that it's something else, especially because ANA (which can point to non-MS autoimmune illness) came back positive. It only rarely comes back positive for MS, and can come back positive in healthy people too - so it doesn't necessarily mean anything, except I will be getting an ASAP appointment with a rheumatologist instead of waiting until next year for an internal medicine doctor. I can't really equate any symptoms I'm having to a non-MS autoimmune illness, except for general fatigue - but who knows it might be a reason for my unexplained decimation of my poor iron stores.
I'm struggling a lot with the fatigue, there's so much stuff I need to be doing and exams are coming up - one of them being a practical exam, outside that involves some heavy lifting. And I need to work over christmas in a physical job. The fatigue and muscle aches start off fine in the morning and just get worse throughout the day until I can't do anything but go to sleep - keeping cool, resting and chugging caffeine helps keep it at bay, but I can't do that every day. I really hope I get some kind of solution to it from my GP - but for the moment, depending on what the occult blood results are tomorrow, it's more tests before any solutions.I'll be back to talk to myself soon 😛
I absolutely understand and agree that having the opportunity and safe space to vent can be equally helpful as receiving advice! I often feel so much better when I'm just about to talk something through or verbalize what's on my mind... my mind is often a busy place haha!
That said, I'm glad that you're able to not only vent here but as it turns out you've sparked quite a good discussion!
- Alene, moderator
Hey! Add me to the vent to yourself club! (haha) Sometimes you just have to get it out, even if know one is listening but here, there is always someone who gets it and understands and is more than interested in talking this thing out with you. I’m glad to hear the symptoms you’ve been experiencing have calmed down a bit. I hope it stays that way. The fatigue and muscles aches can be another story as we all know but I hope relief finds you there as well. There are so many possibilities to why things could be happening, and managing more than one illness alone may make this a tricky discovery, but I am more than confident that you will get the right answer soon. After your doctors’ appointment, if you’re comfortable with sharing how your results turned out we’d loved to get an update on things. What exam in particular are you studying for? I know having to do any heavy lifting may be a big concern so please be mindful of your limits there. With everything you have going on with work, especially since it appears to require a lot of physical endurance, I hope your doctor can give you some helpful suggestions on how to manage of it in a way that is safe for you can doesn’t result in a burnout. All in all, it sounds like your one tough warrior! Continue to take things one day at a time and I’m sure we’ll be hearing back from you soon! Looking forward to it! Kindly, Latoya (Team Member) hello! Thanks for 'listening' to my vent and for your kind words 😀
I have no problem sharing my Dr. visit here. The results all came back negative - so no bleeding in my GI tract and no H. pylori infection. Which is in a way good because I'd rather not have either of those things, but bad because we have no explanation for the huge, fast decrease in my iron stores - which is a major concern. Dr wants to send me to a gastroenterologist for a scope anyway, which I had hoped I had avoided with the negative fecal test - and still wants to send me to the rheumatologist. I have the copies of the ANA, and the pattern I got is more often associated with 'healthy' patients than any other -so I'm not sure much will come of the rheumatologist, but since it's such a complex and highly specialised area the regular doctor can't make any judgments about that test (he claimed to be quite overwhelmed trying to figure out the best path, and I don't blame him I'm overwhelmed too). Anyway, until then, so long as I take my iron supplements, I shouldn't become too anaemic fingers crossed.
As for the exams, I'm studying to be a veterinarian! So we have an animal handling exam this semester, I have to flip a sheep, do a manual control of a cow, lift a horses hoof, lift a dog, and then handle a cat. We had a practice of sheep and cows just the other day, and I managed to get through, though it was much harder than it was when I first learned- the sheep especially takes a lot of strength, and it knocked my energy levels for the following couple of days but I think I can get through - I will ask the course supervisor if I can be scheduled for the morning before any heat hits, I think that would be a fair adjustment they can make.
I don't know what happens to my future study path if I do end up having MS - if I am treated for it and thus immunosuppressed, would I safely be able to meet placement requirements on farms since we can get sick from animals? Would I be safely able to work as a veterinarian (remembering that part of the job is performing surgery)? Would I need to drop out solely because I'm living across the country from family, and I would have noone who could help me if I had a really disabling relapse?
I don't know - I'm trying not to think about it all and jump to conclusions, there's no use dwelling on it while my symptoms aren't really disabling, more uncomfortable, and occur only for a few weeks at a time - and especially when it could be anxiety... I'm already doing poorly enough with my studies just because I've been really depressed and seriously burnt out this year (Autistic burnout, worsened after a bad workplace experience. I'm recovering slowly but surely), I had to drop to part time, so dwelling on possible MS isn't helpful for me, but I have become more serious about documenting symptoms. In previous years I had avoided documenting or looking up anything, hoping if I ignored the symptoms, or didn't dwell on them, that they would go away - because if it's anxiety, thinking about them too hard just compounds the issue and makes it worse... it didn't work, which is what lead me to MS and here.
But for now my MS type symptoms are gone, and it's all just fatigue and muscle aches that (I think) are more likely related to a drop in iron, which is another issue altogether and I don't think I'll have answers for a long while. Life's just too stressful sometimes, but I'll take the small win! (sometimes you don't notice something is strange until it's gone, I didn't realise just how sore my tongue and mouth was all the time until it's back to normal sensation)
As for Christmas work, I have survived the past few Christmas', I can do it again! It's only a few hours in the AM and then I can sleep the rest of the day if I must. I need this job, and enjoy it (it's looking after cats in a cattery), so I just have to have hope and do my best 💪.
I will likely be back when I get some answers, or get another periods of 'MS-type' symptoms, but thanks for checking in.
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I'm so sorry about how long this got, It just kept going. I did try to prevent my oversharing butt from telling you all my life problems - that's a for a different forum 😛 Life can be a lot sometimes - I hope you are doing well with the Christmas period coming up, I think it's stressful for everyone, even if they don't celebrate, and stress doesn't do nice things to anyone.I love that you gave it a nam "vent to yourself club!" That's fantastic haha! I think we're all part of that and perhaps should have t-shirts to unite us!
- Alene, moderator
If I'm understanding your post correctly and please accept my apology if I'm not, I'm currently in a state of brain fog the past few days, but it seems like you're saying that he seems to exacerbate almost every aspect of your MS symptoms or the symptoms that you experience that you are attributing to possibly being caused by ms. I have severe anxiety and depression but my MS symptoms I've been able to differentiate from my mental health symptoms and let me tell you that for every 10th of a degree the temperature raises my MS symptoms rise exponentially including brain fog physical disabilities fatigue dizziness coordination issues just about all of my annoying symptoms hit me like a ton of bricks as soon as the temperature goes up. I don't know if this helps but if that was what you were referring to please know you're not the only one and that the heat is absolute torture for me because in the winter I'm almost symptom-free other than a few annoying and expected MS symptoms but the heat brings out every single thing that seems to be possible to experience with MS and I take extreme measures to avoid that heat every summer which can be very embarrassing and isolating but I just kind of take it as part of the process and do my best to deal with it by trying to stay as cool as possible with loose clothing, cool drinks, avoiding alcohol or anything that could raise my body temperature, avoiding outdoor activities and keeping my home at 61° and making sure to stay out of the Sun making sure all my exercise takes place indoors and bringing neck fans with me when I go places and ice packs sometimes on really bad days and taking part in as many water activities as possible that completely submerged my body in cold water like water aerobics or ocean swimming. If I misunderstood your post my apologies but just wanted to let you know if heat is your concern I have the same issue and I'm sure by now that it is from the multiple sclerosis not from my mental health because my mental health symptoms do not tend to correspond to temperature fluctuations they correspond to stress fluctuations which can cause things like sweating but not body overheating resulting in the multitude of issues we face from the MS and heat.
hello 😀 Yes you've interpreted correctly, it's a big chunk of writing so I don't blame you for struggling especially with the brain fog. Brain fog such a terrible symptom of any illness, really debilitating despite being so invisible and hard to explain, I hope it passes for you soon.
As far as I can tell my short periods of symptoms do seem to only occur when the hot weather hits. They don't occur all throughout the hot weather, only for a 3 or 4 weeks at a time. They slowly worsens, then reach a peak for a few days where it's at it's worse, and then leaves again pretty quickly.
It does feel different from symptoms I experience with depression and anxiety - but I have alexithymia (trouble recognising emotions) and poor interoception (struggle to recognise internal states - such as hunger) as part of being autistic - so it's hard for me to say for certain (it also makes it really hard to describe my symptoms, or recognise what is a symptom until it's gone).
Anyway, thank you for all the really helpful tips about the heat and keeping cool. I'm shocked I never considered water activities, living in hot summers sometimes I do sometimes put on a damp shirt when I'm indoors or going for a walk but I have to be careful I'm not making the furniture wet 🤷. I did find out something really great though, instead of icepacks which can cause ice burns, put wheat packs (I don't know what you call them where you are) in the freezer instead. They get really cool but don't freeze so you can keep them on your skin, they don't ice over so no water everywhere and they stay cold for quite a while - and they come in all shapes and sizes. Give it a try if you have one!
It doesn't have to be wheat, I think they come in all sort of grains, or ceramic beads as well, and they all seem to work fine - I have a wheat one (in the shape of a cow 😀 ), a ceramic and a lavender and chamomile, they all seem to work the same. They used to be really cheap, I don't know if they are anymore, you can probably make a tester with some uncooked rice and a sock or something and see how you like it. I used to just use them for heating for winter and cramps, and then someone recommended freezing them and it's the best thing ever.thanks for sharing that tip about the wheat packs. It sounds like a really interesting concept and one that I would be interested in trying out. Adding some lavender to the mix sounds wonderful as well! I love lavender and often diffuse it in my bedroom at bedtime.
- Alene, moderator
Thank you so much for the tip I'll definitely try that I've had success in putting wet washcloths in the freezer and then putting them around my neck when I'm overheated. Also I noticed a huge difference if I make sure that the water I drink is refrigerator temperature instead of room temperature keeping the water that I drink cool cools down my body so much better than drinking room temperature fluids. Also staying away from caffeine alcohol and high fructose corn syrup seems to help my body flush out the water better and keep me cooler. Just be careful not to drink too much water as in more than a gallon or so per day depending on your weight and what your doctor says because you can get hyponatremia which is a dangerous decrease in your body's sodium content and it messes with your electrolytes and your body's ability to send electrical impulses and it can actually be fatal my father has low sodium so I've seen him pass out from that many times and if one drinks too much water too quickly it's possible to cause that phenomenon. So definitely discuss with your doctor the correct amount of fluids you should be drinking during the hotter months and whether it should be water or a water and Gatorade mix. But the water sports are a lifesaver you don't even have to do a sport just go to a river and get in LOL it takes the weight off your joints so it helps the pain immensely and it cools you down immediately and then on top of that something about water seems to suck the energy out of me and anytime I go in a body of water and fully submers myself for a good period of time I sleep really really well that night without pain so I cannot recommend going swimming enough whether it's at a pool a river a lake an ocean anywhere you can just get your body down in some water even your backyard in a kiddie pool is better than nothing! Thank God this summer is almost over I thought it was over but it came back so fingers crossed that was the last of it and we are now heading into nicer cooler more manageable healthier weather! Thanks again for the tip I will definitely try that freezer pack you talked about!
All really awesome tips, Summer is just starting up for me, so I will try putting them into practice and hopefully I don't get another 'episode'. I hope the heat ends where you are soon, I hate when it seems to be gone and then comes back and it sounds like it makes things even more tough for you - I will be staying away from lakes and rivers though, the crocs have been very active this year 🐊 yes I am celebrating the end of summer too - I never thought that I would say that as I love time at the beach. Keep us posted on the freezer packs. We would love to know how they workout for you.
- Alene, moderator
