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Seeing neurologist and need advice.. No diagnosis yet or any info on what's wrong with me

Hi everyone, I’m a first time poster, from the Republic of Ireland but this forum came up in a search online so would like to stay a member if possible as I don’t see anything else really online! So I’m a 24 year old male, a post grad student. For about a decade I’ve had aches and pains and brain fog and occasional dizzy spells or chest pain. Heart a few years ago was declared fine. Found out in 2015 I had Crohns disease which is an autoimmune condition though that is now fully in remission. I have confined to have fatigue and aches that seem unrelated to the crohns, as well as brain fog etc. I go through spells where these aches and pains get much worse. I can’t describe them as a pulled muscle like pain, more a dull aching feeling that sometimes feels kinda burning. After these severe spells I get twitching, jerking all over. Though usually in my legs, arms and neck or shoulders. I often get a tingling feeling in my feet. My balance too tends to be off. It comes in what I can only describe as flares, as in a cascading event where one syntoms triggers the next and the next and takes up to a month or two for me to return to my usual self. Which is just tired and achey. I should add I also get some tingling in my face at times that lasts seconds to minutes. I also do be stiff alot but usually more in the morning. I’ve been also getting Erectile Dyfunction for a few years that has got much worse, to the point I no longer can obtain a strong erection ever. I’m waiting to get a brain scan, blood tests etc and should see a neurologist in the next few weeks. Can anyone tell me if this could be MS? I feel it could, though of course I’m also panicked thinking worse things like ALS and Brain Tumor, though know they are less common especially ALS when under 50, never mind mid 20s. If anyone had similar symptoms to me that would be interesting to hear. I also get dull headaches at times and do be off balance when bad. Thanks guys for any replies

Hello Hughes

Welcome to the forum, we’re not bothered if you’re from the U.K. or not, all are welcome.

There is a danger, when you are suffering unknown symptoms of the kind you describe, of googling and scaring yourself silly with MS nevermind ALS.

The trouble is that there are all sorts of symptoms that together could add up to MS (or indeed another disorder), but really don’t have to. The trouble is that when you’re suffering these symptoms, you want an answer asap, yet medical tests and appointments go slowly.

I can’t say that what you’re experiencing does or doesn’t look like MS. There are many other diagnoses that look like MS. Some of them quite straightforward to resolve (vitamin deficiencies!?) and others less so.

At least you are following a sensible course, or seeing doctors and getting properly checked out.

Let us know what happens and if there’s anything we can do (apart from waving a magic wand and either diagnosing or curing you!)

Sue

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Thanks Sue.

Yeah, I understand I may be experiencing irrational panic from googling. I just seems I definitely have something neurolgical going on be it serious or more simple. Really wanting answers as you yourself pointed out. Guess Ill see what the doctors say in a few weeks and how tests go. Just hope whatever it is gets sorted soon.

Can I ask what your symptoms were or do be? Hope you are doing well.

My situation is somewhat different. My first symptom was almost 23 years ago. One of my fingers went numb and stayed numb for several days. I saw my GP who was pretty good and immediately referred me to a neurologist. Within a couple of weeks I’d seen the neuro and was booked to have a load of tests as an in patient. My symptoms expanded to include numb legs and other sensory things. To be honest, I thought I was overreacting. The tests (MRI, lumber puncture and VEP) showed that I had MS, or at least what might today be labelled as a Clinically Isolated Syndrome (or CIS), but I was told ‘it’s OK, you don’t have MS’. As I didn’t even know that’s what they were testing for, I said ‘of course I dont’. They gave me a 3 day course of IV steroids and sent me on my way.

Five years went by, I had several relapses (optic neuritis, the MS hug, numb hands and legs, weakness), which I tried my best to ignore. Eventually I had a bad enough relapse that I again saw a neurologist. This time, I was told ‘it’s MS’. I then obtained a copy of the discharge letter and test results from 1997. It was clear that MS could have been diagnosed then.

But in 1997, there were no disease modifying drugs. There was no effective treatment. There was no point in diagnosing me. Instead, I just lived my life, dealt with weird (to me) relapses and didn’t panic. Looking back, I’m glad I had those 5 years undiagnosed. Then again, while we didn’t have DMDs, we also didn’t have the ever present internet and Dr Google to frighten me.

Now I’m pretty disabled. I’ve been unable to take the disease modifying drugs which became available in the year I was diagnosed - 2002 - because of side effects. So after one particularly severe relapse 8 years ago, I’ve been unable to walk. I have a load of symptoms, I’m still somewhere on the relapsing remitting continuum (currently progressive relapsing). But I’m OK.

Your reaction is absolutely typical of today. You have strange symptoms, you automatically reach for a device to ask the www what’s wrong with you. Then you can be frightened and want answers. I’m not at all surprised. We love the Internet, it’s a wonderful world where we can find answers to all of life’s questions just by asking Siri or Alexa, or consulting Dr Google. But it doesn’t necessarily help with our fear and our worry.

Try to hold onto the idea that you may have something or nothing to worry about. There’s no rushing answers. All you can do is be patient and attempt to just live for now. Worrying isn’t going to help or change matters. Internet searches won’t either. Hopefully it’ll be something easily fixable.

Keep us informed of what happens.

Sue (Sorry, I seem to have got a bit carried away by your simple question!)

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