In limbo - maybe MS


I’m afraid this is another “could it be MS” thread but I have the need to vent so please understand.

Last year, around march, I began to notice my eyesight was acting in a way it hasn’t before. The text on my monitor felt like it was vibrating, the lines of text seemed to be slightly jumping up and down. Everything felt a touch more unclear than before. A week or two after this I started to feel a tingling sensation on my lower left leg. Similar sensation to when your hand has been in a bad position for an extended period and you feel the blood flowing back in. The sensation spread to my right leg and has since turned into a daily ache. I also developed a tight feeling in my throat. There’s no pain as such, it just feels tight every time I swallow. This has progressed to occasionally coughing after eating. At some point I began to feel like someone was giving me light electric shocks around my body. These sensations have progressed to muscle twitches. There’s no particular area in my body that they happen in. It’s easier to notice when it’s a bigger muscle, like my calf, beginning to twitch. But it could be eye twitch, finger, a muscle on my back…so on. The twitches don’t last long, usually under 30 seconds or so. My bowel doesn’t seem to be working well. I’m also tired all the time and no matter how much I sleep I still feel tired. Just a little less so. I become exhausted very easily. After a 20 minute walk to work from the train station I’m already gasping for breath. Same thing when I arrive home (3rd story) and don’t use the elevator. This hasn’t been the case before. I also feel a dull pain sensation behind my eyes, see halos around lights when it’s dark, have what the ophthalmologist called visual snow.

At first when it was just my eyes I visited an optometrist (I have glasses due to slight nearsightedness) but the results were pretty much same as last time. After the symptoms began to build up I have visited an ophthalmologist twice, seen three different neurologists, repeated appointments with gp’s. I have also had my head and spine mri’d (1,5t). The mri’s were done around June 2019 and there were no findings. I had my head mri’d again earlier this month: no changes from the previous mri. What has been found so far is that I had a slight vitamin D deficiency which has been treated with supplements. Also my testosterone lever was found to be very low and I was prescribed testosterone salve for it. B12 was okay, Lyme test was negative, thryroid values were ok. EMG test on my legs and arms was normal.

The symptoms have been chalked up to various things. Like tension teck. This could make sense as I don’t exercise much and spend a lot of time sitting by the computer. I’ve seen a physiotherapist three times for a back, neck and shoulder treatment but I felt it had no effect one way or the other. I was prescribed a muscle relaxant which has made me feel slightly more rested after sleep but other than that I haven’t noticed benefits from it. I’ve had bouts of depression/anxiety before and this has also been suggested as a cause. I’ve never had these kinds physical symptoms from depression or anxiety before apart from an upset stomach or such. Venlafaxine was tried, it eased the feelings of pain somewhat and dulled the range of emotions but also caused my pupils to dilate and make my eyes sensitive.

The last appointment I had with a neurologists was earlier this month. He is a ms-specialist and told me he thought my symptoms were “positive” and not a result from nerve damage for example. He did the basic tests: check for babinski, see how I walk, looked at my eyes, touch stretched hands to nose and back etc. Also because the old and new MRI’s were clear he told me that pretty much ruled out MS. There should be some signs of inflammation even if was, say, PPMS.

At the moment I don’t really know what to do. I feel like I’m in a limbo. I don’t want it to be MS of course but I’ve personally suspected it could PPMS for a while now since the symptoms have built up and don’t go away. The low vitamin D findings don’t exactly easy those suspicions as it has probably been low for a very long time. During my research I’ve also read articles that low testosterone might be linked with MS. Or rather that high levels might protect from MS. And my level was very low. All of these combined seem to tick too many boxes for MS/PPMS. But I’ve been told no so far. I would like a lumbar puncture done but it seems difficult to insists as everyone tells me MS has been ruled out. My vision seems to be worsening, I’m in pain and exhausted. I’m wondering how long I can keep things up before I have to say that hey, I can’t see or walk anymore so I can’t come in to work today.

Thanks for reading.

Forgot to mention: I’m 33 and male.

Sorry to hear about this mate. My symptoms are fairly consistent with yours and I feel I might find myself in the similar position of not being able to get a diagnosis. It is interesting that the EMG testing came back as normal as you mentioned you have had the tingling since last March. I am set to get this done myself and thought the testing would be good enough to identify nerve damage if you are getting electric shocks. Hopefully one of the experienced members can provide some good advice on possible next steps.

To be honest as no point in being anything else. NO i dont think you have MS, but then I am not a doctor.

I had more specific things to start with and had positive tests from the get go.

LYMES. You can have a negative test its called false positive. If you have had it awhile it can hide away when tests are taken.

You say you I don’t want it to be MS of course but I’ve personally suspected it could PPMS for a while now since the symptoms have built up and don’t go away

You sound disappointed to me to be honest. I never even heard of PPMS in 2006 when i first started my journey. Its actually more rare then RRMS. I have it. from 2006 to now I have slowly over time, lost mobility and have had several proven bouts of optical neuritis. even then i had never heard of PPMS. I was shocked when my neuro after a second VEP test diagnosed me with progressive MS. Its seems it comes quite often firstly with ON. Which mine did.

sounds like M.E. when you say walking makes you GASP for breath.

this is my journey link below i hope it gives you an insight as it took me a long time to get my diagnosis. BUT for now you need to do several things.

stop googling, eat more healthy, stop smoking, exercise more, and well stop worrying basically. I would be interested in why your testerone is low and your vit D too. You could have an auto immune thing going on.

sorry i am being honest this morning didnt have a good night lol.

They do an EMG to detect these diseases:

  • Carpal tunnel syndrome
  • Pinched nerve
  • Radiculopathy
  • Sciatica
  • Neuropathies
  • Muscle diseases
  • Muscular dystrophy
  • ALS (Lou Gehrig’s disease)
  • Myasthenia gravis

Thanks for the replies. I don’t mind honesty! Though I would like to point out that I do not smoke :slight_smile: Otherwise I do agree that I should try to exercise more and worry less. I live up in the north which probably explains the low D. As for the testosterone, I don’t know. The urologist I saw did send me for additional blood tests but they came out ok so there was no apparent reason found. Could be mine is naturally lower than usual, though they told it was quite low, around 6.7 nmol/l if I recall correctly offhand. I have a follow-up next week with a gp and I’m going to ask if I could get something for the constant leg pain as ibuprofen and similar drugs don’t seem to ease it.