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Confused and Scared

Hey everyone! Not sure if this is allowed here but I just did not know where to post or to go. So I am 21. This past year (2017) has been scary as hell and a crazy ride. I have seen doctor after doctor and each likes to give me a different diagnosis. My symptoms started as vertigo and lightheadedness so I was told it was just anxiety and panic. Then CFS. And then a vestibular disorder causing dizziness. Never was a big anxious person before all of this.

Now, as the year has passed, I have eye problems with permanent floaters, tinnitus, balance problems, dizziness, brain fog, depersonalization, leg and arm “growing pain” feelings and numb feelings deep in my muscles (nothing crazy or alarming), episodes of slurry speech and confusion, memory problems like I’m 70, breathing issues and chest pains (like someone is sitting on my chest), and head pressure and pain where my symptoms will couple and make my seemingly harmless headache be from hell. I have food triggers and sensitivity to light and sounds so “going out” anymore is pretty nonexistent. Oh, and not sure if this matters but anytime I am in a hot room or taking a hot shower, or any heated area I get so weird and dazed. My vision goes funky and I get on a rage moment to escape that situation immediately; all my symptoms ten fold.

I just feel detached and weird all the time. I use a cane to get around. I’ve accepted a lot of it but now I just want tested for this but my neurologist is so sure this is all a “migraine” variant. Which I think is a blanket term for something else going on. I just have progressively been getting worse month after month and the “migraine” medicine hasn’t done crap for me. I have family history of MS, and just want an explanation for all of this weird stuff happening to me so suddenly and out of the blue. It has literally changed my whole life around and made me live by my symptoms and how I’m feeling on “x” day.

If I may add, I’ve had blood tests to rule out other things and no seizures, no other conditions so far other than Vestibular, MAYBE. No lumbar puncture; no brain MRI recently to see if lesions are developed. Last time I had MRI was July of 2017. Saw one lesion but said it was “migraine”.

Just wondering if this even sounds like MS or if I’m nuts like my neuro wants me to think. lol thank you for reading :slight_smile:

Hi,

I’m afraid that no one can make a diagnosis from what you have written. And it would be extremely stupid and irresponsible for anyone to try. But that’s no reason for ignoring your post.

If you don’t like what your GP and neurologist are telling you then you are free to get another opinion. If you can you, can pay for a private consultation and ask for more tests to put your mind at ease.

Best wishes,

Anthony

Hello

The danger everyone faces when they have family connections with MS is to put their symptoms down to MS.

And we can’t second guess your doctors.

If your neurologist has seen your last MRI and said there maybe one lesion, but it’s not suggestive of MS, then perhaps you need to accept that it may not be MS.

I know that when you have symptoms that are unexplained, all you want is a verified diagnosis. But it sounds like you are some way away from one.

The problem is that your neurologist doesn’t think you have MS. And your MRI doesn’t look like MS either.

I doubt that you are, or that your neurologist thinks you are, ‘nuts’. Sometimes it’s just very difficult to establish the cause of someone’s symptoms.

All I could think of to do is to keep seeing your neurologist, keep your GP informed as to the symptoms you have and start a diary to track your symptoms. If you can pinpoint exactly what has occurred and when; what has lasted and what hasn’t got better; then maybe you can help the doctors to figure out what is wrong.

Best of luck.

Sue

Thank you so much Sue. I really appreciate it! I am not looking for a diagnosis I guess just wondering if my symptoms are even symptoms of the kind you have or not. Thank you for your response.

Thank you, I may just do that!

Hi

I think one of the problems with MS is that there are so many symptoms associated with it that even if someone answered your post with absolutely identical symptoms (or what sound identical from your description), it wouldn’t necessarily mean you had the same diagnosis of MS. Or in fact of anything else.

So if you’re looking for someone to say, ‘yes, I’ve experienced 75% of the symptoms you have and I have MS’, it would be meaningless since a diagnosis is more than symptoms. It’s clinical data that persuade neurologists to make diagnoses.

So, some of your symptoms are things that I have experienced. Others are completely outwith my experience. I have MS and have had it for 21 years. I’m also 30 years older than you, female and have had a variety of different drug treatments, other illnesses and disorders over the 51 years of my life. So some things I live with are not even related to MS. I don’t think it would be helpful for me to say I’ve suffered with X but not Y.

Best of luck getting your symptoms diagnosed and hopefully, under some kind of control.

Sue