Last reply 1 week ago
Being Diagnosed.

Hello, for a year and a half, I have had multiple symptoms that were misdiagnosed or ignored. I’m currently seeing a neurologist and awaiting my MRI results of my neck and brain. Neurologist definitely seems to think something is going on and mentioned MS. I have received a lot of blow back from my family saying it’s in my head and even being laughed at. It’s been rough and at times feel like throwing the towel in. I was fine for almost 6 months and it kicked back up. Here are my symptoms:

Complete breakdown of my symptoms I’ve been having for over a year:

1. Tingling and numbness in the face and tongue. Crawling skin sensation.
2. Tingling in the arms, legs, hands, feet.
3. Sweating neck feeling no sweat present.
4. Burning skin sensation.
5. Ringing in the ears, feeling of something crawling in my ear, diminished hearing comes and goes. Ears tested, nothing wrong.
6. Dizziness (really bad last year)
7. Vision has sometimes blurry spots, black spots.
8. Constantly fatigued and tired
9. Sore, stiff, neck and hips, which the hips are worse after sitting down for awhile.
10. Electric shock pain in throat.
11. One bout of double vision last year.
12. Depression and anxiety.
13. Easily forgetting what I was doing, saying. Saying mid sentence, words not coming out right, forgetting why I walked into a room.
14. Confused when there is too much going on around me.
15. Symptoms come and go.
16. Left leg feels like it wants to give out
17. Random cold spots, or what feels like cold water on my skin.
18. Headaches.

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joshua_harris
1 week ago

Almost forgot, muscle spasms in legs, sharp stabbing pain in feet, legs.


simone2
1 week ago

I was lucky (if you can say that when you have ms) I got diagnosed really quickly, because with ms you get some strange symptoms and would think you where going mad when you aren’t diagnosed, so try to take no notice what other people say you know how you feel;


vixen
1 week ago

Hello @joshua_harris, I assume those symptoms played out at varying times, rather than all at once? The min thing is that you have had an MRI. If demyelination is found, then the next stage might be a lumbar puncture. That said, demyelination and the other symptoms you describe can be attributed to other conditions.

I’m assuming that you’re on the young side, although that’s a guess. Everyone will tell you that this period of being in limbo is the worst, whatever the outcome. It’s great that you’ve catelogued your symptoms as, if it is MS, a plan can be built around your history and case. I know it’s hard, but focus on questions you will ask the neuro at the next appointment. Meanwhile, post any questions, there is lots of support for you here, so all the best 🙂


stumbler
1 week ago

Hi @joshua_harris and welcome.

Your story is unfortunately not unusual. Family and close friends can be unknowingly heartless.

Is it MS? Well, all those symptoms do present in MS, but they can also present in other conditions too. We’re quite complex creatures, so it’s down to the Neurologist to arrange the diagnostic scans and tests and interpret the results.

That list of symptoms is a useful list. It’s something to copy and present to medical professionals for when they scratch their heads and you can ask them to explain that lot!

Be patient and you’ll get the answers.


joshua_harris
1 week ago

@stumbler I had a full blood work up, and all came back good except for I’m one point below on my vitamin d. A lot of stuff has been ruled out.


stumbler
1 week ago

@joshua_harris , it’s a frustrating time for you.

Unfortunately, our Neuros and Doctors aren’t magicians. They can’t actually see inside us, but just get views, which may not be comprehensive.

They have to look at all the tests, scans and your clinical history and make sense of it all. As I said above, we’re quite complex.


iris
1 week ago

Hi Joshua. firstly agree with Stumbler. My sons [40s] same. Maybe it is that they cannot initially face up to what looks like may become a fact for you… and them! They may even resent it for a while and be angry with you but over time they my be more understanding. No picnic this but like having babies the first is bad, tiring confusing hard work etc but the more you have the easier it gets and becomes a usual way of life. There is no right or wrong way. whatever you feel, others will have been there believe me!

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