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Good morning people 😀

So I haven’t been diagnosed and I know this isn’t a diagnosing platform but I was wondering about my symptoms.

I ended up with a questioning diagnosis of CF about 5 years ago but that was just post viral as after about 18 months I wasn’t as bad however over the past few years I have been getting different symptoms.

It usually happens after I’ve ‘done too much’ but sometimes it’ll just hit me. Main symptoms are the same:

Back pain

2 years ago I started getting a burning in my hands like I had come inside from the cold. I was working and it was the middle of summer.

Other symptoms which seem to come after a flare up are

- Electrical jolts down my back
- Itchy spine
- Wet feelings on my face or hands sometimes feet. (I have to get people to check!)
- A tight pressure in between ribs at the front which can make me feel nauseas
- My walk can go funny like one leg is really heavy
- the other night I had a terrible tight band like feeling on my arm which went down to my hand and I had a cobweb feeling on my thumb.
- sharp headaches
- I have had a neon green light in my eye before.
- itchy under my right shoulderblade which doesn’t go away with itching.
-twinges in joints
- Weird sensations on my back

Blood tests are all fine and I have a neurology exam in a couple of weeks.
I have pushed for this because there’s definitely something going on but usually if I’m active or do too much mental work.

So I guess I just wanted a rant but also is it daft of me to push myself before the appt so they can see it in action. I would have usually had two days doing nothing before the day..

  1. , first, I want to say that I am sorry you are experiencing these symptoms. It just plain stinks when our bodies don't work the way we expect them to. Second, I am sorry you are still searching for a proper diagnosis.

    However, I am very glad that you haven't stopped pushing for answers and advocating for your health! You are definitely experiencing a lot of weird symptoms that may or may not be related to MS. Blood tests aren't the only tools used to diagnose MS. An MRI can be a very important part of the diagnostic process, along with a physical exam, patient history, and, possibly, a lumbar puncture. You can read more about the tools a doctor may use to diagnose MS here -- It's probably a good idea to go in with a written list of all the symptoms you have been experiencing. Also, consider asking about the tests mentioned in the link I shared. And it sounds like you are quite good at standing up for yourself, so, if this upcoming appointment isn't fruitful, please don't quit! Obviously, something is not working correctly in your body and it needs to be addressed.

    And, hey, you can come vent here anytime -- that's one of the reasons we have this community. I do hope your appointment is productive and please come back and update us, if you feel comfortable doing so.

    Best, Erin, Team Member.

    1. hiya Erin, thank you for your reply. I am currently writing a daily diary and have a nice a4 with various symptoms to take with me!
      I did initially ask for an mri, but he wants to do the exam possibly to pinpoint where we need to focus?
      Im just happy it’s not more blood tests as it has been for the past few years and that things might be moving!

      Im 27 now and feel as though I’ve not yet had chance to live as actively as I like!

      Thank you very much 😀

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