Hi all! I try to write as short as possible. So, 10 months ago I lost my smell and taste senses for a week and a half. As covid is the topic at the moment my GP sent me to test for that 3 times - all negative. But at the same time I started to get tingling in my right leg and arm and finally at some point it felt all my right side was numb (leg, arm, half face, body, even private parts). When that happened I went to ER, got blood tests and CT, all good and nothing is apparently wrong. Got a referral to neurologist, got MRI of brain - clear and MRI of c spine which showed one lesion. Then I got a referral to LP and for a new spine MRI. This time (it was 2 months later) MRI of spine was clear, they said it was an artifact and LP was good too. They suspected MS all this time and after this spine lesion I was sure that was it too and now I don´t know. I still have symptoms, still on my right side. Some day´s I feel good and don´t have symptoms but then some other days I feel so bad. This numbness in my arm and leg is always there when touching skin but sometimes it get kind of worse when I feel like my arm or leg is swelling up (when it really isn´t) and some days I feel my lips and face is numb too. I also sometimes have heavy feeling in my arm or leg and even muscle or nerve pain. Last month this pain has been so bad some days that I can´t even hold a spoon with my hand because it is so painful. A few months ago I lost my taste and smell senses again for a week and then neuro told me to come back after 6 months and then get a new brain MRI. I also apparently have a mild clonus in my right leg and reflex in my right elbow was diminished. So I don´t know what to think or do anymore. Yes, I will wait until I get the new MRI but I don´t know for what to prepare myself. Is it possible to have clear MRIs and LP first while having symptoms? I mean, when neuro suggested a new MRI then I guess it could be possible that something may show up later but what? I really don´t know what it could be if not MS. They did many blood and urine tests and have ruled out many things with those I guess. So what could be left there to do?
Sometimes lesions do not show up on MRI scans. Sometimes lesions disappear from MRI scans if the lesion heals. Sometimes a ‘lesion’ turns out to be an artifact. Lesions can also be caused by many things, not just MS.
Your neuro seems to be taking good care of you by scheduling a future MRI scan. Really it is just a case of wait and see what (if anything) develops. Yes it could turn out to be MS. At the moment take it as good news that the LP was clear. On the otherhand it could be a virus (with no name - and there are plenty of viruses around that are not ‘discovered’), that gradually clears up.
I know it is hard to do, but try to keep an open mind. Be mentally aware that it may turn out to be MS, but at the same time keep hopeful that it isn’t, and try to live a healthy lifestyle (which never does any harm!). Live in the present, and give yourself time to enjoy things you like doing, as even when waiting for a diagnosis, life goes on, so make the best of it.
Hoping that it turns out to be just a temporary condition and that it does clear up.
It’s possible you have one of the less common types of MS.
Have a read of some of Prof G’s articles - well worth a subscription. I’ve found them very interesting and also strangely comforting. He covers, among other things, what he refers to “smouldering MS” in which lesions may be present but too small for normal MRI’s to resolve. Also symptoms can get worse yet no perceptible inflammation.
Thank you so much for your kind answer! I guess I am a little too much in my head and of course scared of the unknown. But your kind words are more reassurring and helpful than those who have said it’s all just made up in my head and I should just get over it.
I was told to do that in around 1998 when weird stuff was happening. 2016 diagnosed with Progressive MS.
If it is MS it will finally show itself. But for your own sanity just live your life and do things. There are so many other diseases like MS symptoms its hard to sometimes diagnose. There is also a criteria that has to be met before a neuro can say yes it is MS.
BE PREPARED FOR Functional disorder, anxiety and a few other disorders which will probably come your way. (I have had it all lol) but sadly MS won. xxxx
As everyone else has said, you’re fortunate that your neurologist is following up, not seeing clear test results and discharging you.
There’s little we can all say other than it’s really a bit of a ‘wait and see’ situation. Which is frustrating to say the least while you continue with problems.
As CC said, other diagnoses will in all likelihood be flung at you. One of these is Functional Neurological Disorder, for which this might be interesting: https://fndhope.org/
The simple answer to your initial question though, is ‘yes, it’s worth still following up’. When you live with constant, or fluctuating symptoms, you kind of owe it to yourself to continue to seek answers.
If on the other hand, things get better for you, and the symptoms improve radically, then try to put it out of your mind if possible.
Thank you so very much!
I guess I should appriciate a little more that my doctor haven’t dismissed me. And this reading about FND - I’ve never even heard about it but it was a good and helpful read, thank you for that! It makes my mind a little more at ease about all this.
Thank you for your answer! I think stories like yours which I’ve heard that you can go undiagnosed so many years are one of the reasons why I am so afraid. Tests were clear, no MS or anything and you can just move on - that’s what it should be like. But then I think of all these people saying their stories and in the back of my head I think - well I guess I can’t rule anything out just yet. Maybe I am not one of those but what if I am. I try to live my life as nothing is wrong but some days it is hard not to notice these things. And I am still so young, I have just started to think about having a baby maybe soon and now I am even afraid of doing that.
What a nice message