Highly suspecting MS

Hello all

i am currently undergoing investigations for my neurological symptoms. I am 39 and male. I am quite concerned about the range of the symptoms and speed on their onset. I thought maybe people here may have some thoughts they would be happy to share.

Back in 2019 I had a single incidence where I thought I had stepped in something wet, but I hadn’t. Then in July last year, I suddenly had a vibrating/buzzing sensation in both my legs when at rest. It would last for hours - not painful, just annoying. I thought it may have been restless leg syndrome at first. This feeling happened in my trunk when waking up during the night for a couple of nights too. This went away after 3 weeks and I felt nothing more for 6 months.

Then in January this year the feeling came back for a few weeks and it included a feeling of “tugging” on one of my small toes on my right foot. I went to a neuro privately as the NHS wait time was 46 weeks (!!) and he ordered a standard 1.5T MRI of brain and spinal cord - assuming it was likely a “post viral” thing. Blood tests were normal. The scan came back showing no signs of demylination and my neuro just said “it isn’t MS”.

The leg vibrating sensation went away again after a few weeks but left a host of other weird, mostly sensory symptoms in their wake. The day after the leg vibration feeling went away, I noticed that touching my groin/inner thigh makes a referred gravelly sensation in my right foot small toes - as if gravel is being rolled around inside them as I move my hand over the skin of my groin area (the same toes that had the initial tugging feeling), then shortly after I started getting Raynauds like phenomenon in my feet and also parts of my hands, with freezing cold toes and burning sensation in my soles, wet/cold splashes sensations on the skin of my legs which went away but returned after a few weeks on my arms and face too. Then I got a sudden onset low level tinnitus and sensitivity to loud/abrupt sounds - this was really difficult to deal with at first but had become slightly less aggressive over the weeks. When I walk it is like I have sand swirling around inside my feet. I started to get numb hands on and off when waking up from even short bouts of sleep. Some pins and needles have started to develop in my hands and feet too, especially when I am stretching them. Being out and about is difficult as I often feel like I have to really concentrate on walking and activities to make sure I’m alert. I just don’t feel as snappy and “with it” as I used to. The latest thing I am having, is a horrid buzzing feeling in my lower half of my body - like my sacrum and legs are a tuning fork. This began in small bursts from time to time a few weeks ago, and lately I have had a few 12 hour long stints with this feeling which I guess could be described as an internal tremor. It is a really horrid feeling as my legs feel like they quiver when it’s happening and my feet feel like they have mobile phones or tuning forks buzzing inside them. Thankfully it isn’t happening all the time, and the main constant irritant is my feet which always feel like they have gravel or sand in them when moving around or walking.

My neuro still seems to want to hold onto the idea that it’s post viral, or if it is MS, then it’s likely “mild”, which doesn’t convince me. He even gave me 5 days of 500mg steroids as he thought I was having “a little flare up of inflammation”. Hmm. I’ve just taken my last lot of them today.

I have just asked for a further (private - I am totally skint now) MRI, this time 3T with contrast injection as my first MRI was done before most of these symptoms had emerged and wasn’t with contrast. My neuro agreed and is doing a lumbar puncture on the NHS in 2 weeks too, so I should know more definitively within a month or so. My main concern is the speed of onset, number and length of the symptoms. They all came on quickly after the initial leg vibration feelings, but haven’t really “remitted” yet in the 2 months since it all came on (though they undulate and come/go) and of course, they are affecting most parts of my body. So my main worry (being 39 and male) is that it may be PPMS. Yet I had read PP tends to starts less suddenly (like Weakness in one area of body) and gradually shows up rather than coming in all at once like in my case? Is it still possible I have RRMS? Are initial/first/early flare ups in RRMS likely to last for 2 months before evidence of any remission?

I am bracing myself for an MS diagnosis soon, so any help or support will be gratefully received.

thanks

james

Hi james

it’s 3am and I just found your post : )

I’m also 39 and male , with confirmed MS diagnosis last year, in lockdown #1.

appreciate the difficulty of expressing the sensations in your body…

The brote or attack that got me diagnosed was tingling and weakness in my fingers, that within a couple of weeks had progressed to total numbness, couldn’t distinguish textures, and loss of coordination. I couldn’t tie my shoes or use a fork… my guitar seemed like a total stranger…

I also lost awareness of my hand in space… I couldn’t touch my nose with my finger…and had the sort of hourglass sensation you talk about…

i enjoyed at least the idea of my own ‘spinal tap’ story…

Also had a killer pain in my chest like something was going to explode out…rather than the hug people talk about…

looking back I had some symptoms about 10 years ago… severe vertigo while playing football, warm sensations in my legs like I’d wet myself… and some mad slow motion type effect on my hands where I would see them moving, but feel them moving a fraction later… I had given myself a Dr Google diagnosis back then, but it was 10 years before any reappearance and a proper diagnosis

Last year they hooked me up for 3 days of the steroids … and everything is mostly back to normal…

except I’m awake because it feels like someone is dancing all over my back…

1 tablet a day to try and control the attacks…

I was completely humbled by this disease.
I am a language teacher but did not have the vocabulary to describe what happened to me.

I feel much more ephemeral now, and constantly amazed that somehow I have a conscience… and I am a human being, not some mosquito

not sure if this helps you in any way, but I was moved enough by your post to register and reply

peace :v:

Hi Jaytee, I have had RRMS since I was 17- 27 years now as I’m 44 and all your symptoms are oh so familiar to me. But that may be very good news for as you can see from the time that I’ve had it for. Firstly, Google L’Hermittes Sign. This will explain what’s goin on with the horrible leg vibrations /shocks in your lower body. It’s when you bend your neck forward, the spinal chord stretches & irritates inflammation causes by MS (an Ms Lesion) at C5 (cervical vertebrae 5) These areas of inflammation quite often heal & even disappear. When they do, the symptom disappears. If they leave a tiny scar (Sclerosis), that’s what shows on an MRI. When you have an MRI while you have a symptoms, partway through they inject Gadolinium (Contrast). This is the show any active inflammation up before it disappears to help make a diagnosis. Sometimes a scar leaves permanent damage in RRMS. This means a symptom never completely goes away, or never completely returns to normal. It still might be as near to normal as dammit, and heaps better than it was in the relapse. This does not mean you are PPMS. You are still RRMS as it is Norma’s to accumulate bits of damage with RRMS. This is why a diagnosis as early as possible is so important as there are now so many treatments to reduce number of relapses, severity, duration etc. I’m still RRMS, still walking, doing most of the things I love, but I’ve had some big bumps along the way, and it has got tougher at times, Still, if the Registrar had told me when they diagnosed me 27 years ago that I’d have married & had 2 kids, got a degree, masters etc, worked full time to 43 then part time I would have snatched their hand off! I wish you all the best in the world my friend, and if you have more questions then please ask away as I’m here to help

That was my comment previously- apologies for ticking the anonymous box by mistake James Another test they should perform is VER (Visual Evoked Response) This can find very subtle changes in the Ocular (Optic Nerve to Occipital Lobe Visual Cortex in the Brain) Changes often take place here before any physical symptoms occur even if your vision is perfect, X

Hello everyone!

I am new to the forum and found myself here by accident…

Anyway, I am 49 and female. I have had varying symptoms over a long period of time (years) and my sister in law who is a nurse has asked me if I have discussed the possibility of MS with my doctor. I have not. But I am wondering if I should. So here goes…

I often feel that I do not know where my feet are. I trip, I drag my right foot at the toes at times, and I am ALWAYS stubbing my toes or falling. The big toe on my left foot is ALWAYS numb. I have intermittent tingling in both legs and my hands. My right eye twitches or I have the sensation when I am looking or staring at a pattern, such as in a carpet that the pattern is vibrating. And the FATIQUE!! I suffer from migraine symptomsb (at least I think thats what they are)…crawling sensations in mainly my right ear and on the scalp. I have the associated headaches, but those are rare, fortunately. I have the sensation in my right eye that it droops as well. I have joint pain, tenderness, and swelling…feet, elbows, hands, hips…and at times the skin over the joints is tender to the touch. There is more, but these are the most frequent…

I would appreciate input from anyone.

Thank you in advance

Thank you to everyone who has responded and sent me a private message. It means a lot. Tbh I am struggling emotionally with my difficult symptoms at the moment. Becoming more and more frightened with each passing day. Would the MS Helpline that is shown on this site be willing to listen to my concerns if I rang them do you think? I know I haven’t been diagnosed with MS so don’t want to feel like I’m stepping on toes or using a service not designed for me. It is just that without a diagnosis and nowhere else to turn for the time being (awaiting more tests, can’t afford to just keep seeing a doctor), I feel that I need someone to talk to.

James

You should ring the helpline, that’s what it’s there for.

Carole x

I am sorry that you are having such a worrying time. Nothing to offer but good wishes, I’m afraid: honestly, I don’t think you or anyone else can usefully try to see round corners right now in terms of what is the matter. I’m glad that you have another scan and an LP in the pipeline (although sorry that the former has cleaned you out…) and I hope that you get some clarity before long.

Alison

Hello everyone. Thought I’d give you a quick update.
I have had my lumbar puncture (wasn’t as painful or unpleasant as was expecting - I think the anticipation is the worst bit), and also a new MRI, 3T with contrast. It’s been well over 2 months of symptoms and was expecting the MRI to show something - especially on my brain stem because of my tinnitus and sound sensitivity which seems to be getting worse. However, according to the private neuro who referred me, the scan was “normal” with no evidence of demyelination or active inflammation. I am still waiting on the lumbar results which could take another 2 weeks or so.

I have been left feeling a bit lost and confused. My main NHS neuro won’t talk to me until the lumbar results are in, and the London private neuro I got to refer me for the MRI doesn’t think I have MS and thinks my anxiety is causing most of the symptoms. I’m finding that hard to believe. Of course, not seeming any lesions in a brain scan is good news. I just don’t know what all this means. My concern is that the MRI (even a 3T one) isn’t picking up the lesions yet. Or that it’s something else that mimics MS. Who knows. More waiting around and hoping I get some answers soon.

Hi Jay. I am also a 39 year old male. I presented very similar symptoms to you which started at the end of 2020. It scared the crap out of me which sent me into a downward spiral. I ended up needing to take 2 months off work to try and get to the bottom of what is wrong with me. I had all the blood tests, brain and spine MRI’s and they could not find anything. I took a lot of comfort from this and slowly began to improve. A year later I get the odd strange sensation, twitch or vibration but it is very manageable. The one thing I still struggle with is my eyesight (I have double vision) but my eyes were looked at and there was no nerve damage. All of this has been put down to Anxiety. If you do a search for physical symptoms of stress/anxiety you will find forums like this where people with anxiety will have very similar symptoms to what you are describing.

Thanks Jonny, and everyone else. I have recently tried to pin most of my sensations on a hightened anxiety level but it is hard.

The problem I seem to be having now, is on top of my ongoing symptoms (feeling of sand or liquid rushing through the my legs, feeling like I am walking on sand/foam, raindrops on my skin, pins and needles in feet, tinnitus/sound sensitivity) is that I am waking up with a tremor in my right hand and lower legs. The last couple of days I am finding it hard to sleep as when I start to drift off, my whole body feels like it starts to vibrate or “bounce” up and down quite quickly - at least that’s the sensation I am getting. It is quite frightening so I go into a panic and can’t sleep.

My GP put me on Sertaline to try and help with my anxiety, but after a couple of days I found myself having some quite extreme mood swings and feeling very shaky and I would tremble, especially when waking up. So I have come off them for now to see if this settles down.

I requested the images of my latest 3T scan, and whilst the report said “normal” I was intrigued by the images from some of the slices. There does seem to be some very small white dots in the grey matter in the very top parts and side parts of my brain. The main part of the brain/brainstem looks normal to my eyes, but I wasn’t sure if these other images suggest something I should ask my neuro about. The radiologist didn’t pick up on them. I’ve pasted a folder with the images that caught my eye and thought some of you may be interested to see them and had some thoughts.

Maybe these dots are normal for a nearly 40 year old man. In my previous 1.5T scan just 2 months ago, these didn’t appear perhaps because the resolution wasn’t high enough.

James

I have had pretty much all of these. They were at their worst when I was going through the diagnosis testing process due to stress. There are examples of people on this forum who had clear scans went undiagnosed and then years later it was determined they did have MS. However, when I spoke to my consultant if you have had all the tests and they have all come back clear the chances of you having a progressive neurological condition will be very remote. If that lumber puncture comes back clear you really done as much as you can and need to take a lot of comfort from that. Perhaps then start looking at ways of dealing with anxiety such as exercise, diet, mindfulness etc…

Hi everyone. Just giving you all an update. My lumbar result was negative, so my neurologist thinks that whilst MS remains a small possibility, it would be “very mild” and would likely not need treatment. He isn’t convinced it is MS though. I asked him if the lumbar was “negative” meaning banding was absent or if found in both spinal fluid and bloods, and he said “good question” as the report didnt specify this, it just said “negative” and he was going to check with the lab. One of the things I have been experiencing is very dry mouth in the mornings so he is going to request an antibody test for Sjorgens. Whilst I remain totally perplexed by it all, I need to take some comfort in these test results (normal 3T MRI and negative lumbar result) and try to get back to life as much as I can and deal with the ongoing symptoms. He said tests could be repeated in a year or so if I’m still troubled by symptoms.

Well, the news could be a lot worse. As you say, reassuring results, but I completsely understand why it must still feel very unsatisfactory, with the puzzle remaining to be solved. Thank you for the update.

Alison

Thanks Alison. Yes it is frustrating.
My initial “mushroom” of symptoms have somewhat reduced since the height in Feb /March, but I still have continuous 24/7 tinnitus, muscles have started twitching all over, often for minutes at a time in my legs, like muscle fibres are vibrating at high frequency, and constant weird gravelly sensations inside my feet when I walk and touch my thighs or groin. This has been happening since the beginning and doesn’t seem to be easing. It’s like my nerves or my brain are messing up the signals and refer sensations into my feet when I’m touching another part of my body. Just moving my hips slightly causes the gravelly feeling in my feet. It drives me mad. I also still wake up with partially numb hands every so often. And my right hand in particular often feels really cold, like it’s been in an ice bucket.

I have evoked potential tests on the 26th (nerve conduction tests) and I am quite expecting that to be normal too, just like the LP and MRI.

My neuro has basically said, “it’s a mystery” and to get on with my life. The symptoms are very hard to deal with and am just worried that if it is ms, then I’m missing out on starting meds which could slow or delay another remission. :frowning:
Now sure what to do from here on. Just hope that the symptoms go away, or that they don’t progress. I am so sure I have MS, I wish I could get a diagnosis of something, as not knowing is horrible. The muscle twitching now has me worried about MND which I know is probably silly, but without a diagnosis, my mind goes all over the place!

Hi Jayteeuk
Did your symptoms ever disappear?

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yeah, I’d be interested in hearing too.

Hello both.
Thank you for enquiring into how I’m getting on.

Well, since last posting I had my nerve conduction test. This came back “inconclusive”. There was little/no signal in the feet peripherals but they said this could be down to “anxiety” and apparently my right side signal from the legs was 50% of the left side. My neuro said it was pointless redoing them as it won’t tell him much with a normal MRI. But he has planned for me to have another MRI in March/April which will be one year on from my initial MRI.

My symptoms have softened since my initial “flare up” but I am left with constant tinnitus in both ears, waxing/waning sound sensitivity, constant odd sensations in my toes and the balls of my feet when I walk and move (as if the nerve endings are being stimulated by touch and movement in other parts of my body - like referred sensations) and bouts of muscle twitching in different places though mostly affecting my legs. It is basically livable but annoying. I’ve been on antidepressants for the last 7 months or so and that has helped me deal with it and not freak out at every sensation or mini bout of twitching or odd skin sensation. Thankfully I have yet to experience any muscle weakness or loss of abilities in any way. The ringing in my ears, whilst not extremely loud does interfere with my work sadly as I am a video editor and I’m not able to hear the quieter and higher end sounds as well as I could because they get masked by the ringing. :frowning:

My next MRI should hopefully throw more light on it. I did wonder, if it isn’t MS then it could possibly be FND.

Again thanks for checking in. And I hope everyone is doing ok. I’ll report back at my next MRI result!!

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