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Atypical symptoms

I have had a variety of symptoms, have seen a neurology, they found two spots on my brain MRI, not enhancing, negative spinal MRI. The doctor says he doesn’t think my symptoms are MS, the plan is to repeat the MRI in three months. Meanwhile, he isn’t pursuing any other possible causes. It all started in October with numbness in my big toes caused by the cold. Both sides, but never at the same time. I thought: this might be MS. And this the seed was planted. But since then I’ve had a variety of bizarre symptoms. In February for a week or two I intermittently got tingling in three small dots. Right finger, lateral side of right knee, and midway on my shin. It felt like a very mild tens unit, with a pulsing quality. It never persisted for long. Maybe 24 hrs on right knee but I don’t think so. Mostly it would go away for awhile. That was when I had my brain MRI which they ordered because they couldn’t explain it but were sure my symptoms were not MS. Then last week my middle left toe would tingle intermittently. I had a pulse on the lateral side of left foot in hot yoga. Intermittent, didn’t last the whole yoga session. Did lots of hot yoga and cycling with no symptoms. Now the tingling there I only feel in the morning when I wake up. Then all if a sudden felt vibrating the back of my left heel. Would come and go with a pulsing quality as well. The the lateral aspect of right foot. Both coming and going, sometimes at the same time, sometimes different times. Doc says he isn’t ordering any more tests, doesn’t think it’s MS and maybe I am being hyper vigilant. But I think this isn’t normal for me. He isn’t looking for any other causes of my symptoms. Also, a couple of times when taking a shower the water felt hotter on my feet than the rest of my body. But not every time. My left middle finger went numb in the cold but returned to normal immediately after warming. I can’t figure out what this is if it isn’t MS. Any thoughts about these symptoms? I am very anxious and consumed by this right now. Out of health insurance for the month but will restart next month.

They aren’t atypical symptoms at all. They are completely normal “symptoms”. Normal as in everyone gets occasional tingles and “pulses” amd errrr yeah, the cold makes the exremities go cold from time to time. As for the spots on your brain, many people have a couple of tiny white spots on their brain as a normal maifestation. They can also be a normal part of the ageing process and can appear from the 30’s onwards and are also very common in people with a history of migraine. Don’t read too much into them.

Stop working yourself into a state of worry, forget about monitoring yourself so closely for sensations, save your money and get on with your life.

Trust me, if you do have MS you will know about it in time and this does NOT sound like MS. It sounds perfectly normal.

B

I know this isn’t normal for me. I am a meditator and do body scans. I’ve never ever had these vibrations and tingles. The vibration moved from the side of my right foot to beneath my right foot. I think it would be weird if MS because it is bilateral and coming and going. I’ve been writing it down all tge times it happens so that I can give it to my doctor. I am wondering if this I’d lupus. About six months ago I had steroid shots in my shoulders for bursitis that came and went and then stayed. It was excruciating . The injections helped though. I know that something is wrong, but I don’t know what. The spots on my MRI were not tiny, they were small. Could be normal, could be MS. I am not spending tons of money, but I am worried. I know there is something wrong with me. The continual vibration, the symptoms returning to similar areas and persisting on and off for a week and then moving… Maybe something systemic and autoimmune. Have an appointment with rheumatologist April 8th, will schedule with neurologist as well.

Btw he is suggesting a follow up MRI in April. If I insisted, he would be open to a lumbar puncture and VEP, but I know that it is nonspecific and there could be another cause…

Hi,

You are having it investigated, which seems to be all you can do at the moment.

I’m trying to avoid the word “trivial”, and I know you know what is and isn’t normal for you, but as far as I can see, you have so far had some fairly minor and non-specific symptoms. I’m curious what leads you immediately to the assumption this is a serious systemic illness, and not something minor and treatable?

I can tell you are anxious, as that is very much coming across, but I wonder if the anxiety may be, if not actually causing the symptoms, at least influencing the significance you attach to them? Most people would not immediately start thinking MS, if they got numb toes in the cold, or tingling a few times. I won’t deny that MS can start like that, but it’s not a natural thing for most people to suspect, on so little evidence. I wonder if you’ve had some connection with serious illness in your life, or with MS in particular, that leads you to interpret potentially benign symptoms as possibly or probably “very serious”? Most people don’t even know much about MS, so it’s quite an odd first thing to think. Did you arrive at it by looking on Google, or is there something closer to home that makes it a suspect?

Hope you don’t mind me asking,

Tina

I am a nurse, so have a lot of medical background. I know enough to know this isn’t normal, but am confused as to what…

Also, my aunt has MS

I wonder whether you can harness your medical training to help you here. You know how debilitating anxiety is, and how much real suffering it causes, and how it can become self-perpetuating. You know about the incidence of different conditions - how trivial things are so very much more common than serious ones - and how often non-medical people forget this. Please try to take this knowledge and apply it to your own situation. Be your own patient, and please try to allow yourself to be reassured. Your doctors have satisfied themselves that there is nothing pressingly urgent amiss. Please try to accept this good news and allow yourself to enjoy life again and relax a bit. As others have said, if there is something the matter, time will tell. Please don’t worry yourself into illness.

Alison

x

Hello and welcome to the site :slight_smile: There are literally hundreds of conditions that can cause MS-like symptoms and some of these can be relatively easy to treat, eg vitamin deficiencies and migraine. MS obviously causes sensory symptoms (and other things), but they do not jump about. This is because MS symptoms are caused by damage to the central nervous system and all parts of that have very specific roles, eg if they control something to do with an adult’s left foot, that is what they do forever. So the fact that you are having symptoms in various different parts of your extremities means that you either almost certainly do not have MS or that you have multiple lesions (one for each affected area). If you had multiple MS lesions, it is very very likely that your symptoms would be much worse than they are. So logic dictates that it is not MS. So what could it be? Tbh, it could be any number of things, but I would guess that your diary-taking and hyper vigilance are really not helping. Hyper vigilance is a real thing - there is a whole host of research on the topic - eg people who are scared of spiders see far more (real) spiders than people who aren’t scared of them for the simple reason that they pay more attention to them. The same goes for symptoms. The brain doesn’t help with that either - it is greatly influenced by attention. I think the very best thing you could do is make sure you have a thorough battery of blood tests (including more obscure vitamin and minerals) and stop keeping a diary. Then try and ignore it all while you wait to see what the second MRI shows. If it is MS or anything else like that, then it will reveal itself in due course. As they say in the medical world, “time is the best diagnostician.” Karen x

Thank you for the replies and support. I know that my doctor feels my symptoms are from hypervigilence, but for sure, I know it isn’t… because there have been periods of time that the symptoms entirely leave and I forget all about it, and then Boom! I get hit with another attack of vibrations/tingling. The tinging/vibration is in different places. The tingle in my middle left toe returns every morning, after a walk or after cycling, feels like a vibrating ring around my toe. Then it leaves. The vibrations don’t increase with heat and don’t seem to be correlated with anything when they arise and fall away. They started while I was at rest, and persisted… then went away. Then yesterday they would happen whenever I started walking and then subside after sitting for a bit. I could feel the tingle in my left foot and the vibrations this morning when I woke up. Thank goodness they don’t hurt, but it is weird. It’s just weird that all these symptoms started a month after I started getting the numbness in the cold. The numbness started when it was cold, but took a bit to go away- felt like latex all over my toe. I had never experienced such a thing. Definitely a Raynaud’s like experience, but I’ve never had Raynaud’s before. When cycling in the cold, all my toes and hands go numb. Not painfully, but then when I warm up, they feel REALLY hot. Sometimes, that’s my experience in the shower, where my feet feel hotter than the water feels. It’s just strange. I know it might seem like I’m making it up by paying attentiont to it… I wish that were the case.

They checked all my vitamins and such, everything came back normal. The doctors just say: some people get tingles. But they didn’t look for any other causes. My neurologist just is looking for MS, but isn’t looking for anything else. My primary care doctor told me to write it all down in diary form. I don’t do it all the time, but want to have a complete picture to give the rheumatologist, so they can see what is going on. I’m fairly certain that if this follows the same course of the other neurological symptoms, that the tingling and vibrating will go away in a weeks time. Then I might have a week of peace, and then something else will happen. That’s how it’s been happening since it all started…

Thank you again everyone… I will try to not be overly worried or obsessive. It’s just very scary to experience these feelings and not know what is going on…

Given that your symptoms seem to be limited to your hands and feet, I would suspect circulation problems (or something that causes these). It certainly does not sound like MS.

Kx