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Anxious about neurology appt next week

Hi everyone,

Thank you in advance for reading this - I saw my primary care doc last month for symptoms and have been referred to a neurologist, who I'm seeing next week. I saw another neurologist about 3 years ago for fatigue, imbalance, and tingling in my hands. MRI didn't show anything and blood work didn't point to anything either, he just recommended I take vitamin D. Symptoms relieved after 3-4 weeks and did not return in full force until early October this year. I'm now going on about 6 weeks with this episode. Blood work showed vitamin B12 and D were normal.

Symptoms included during October:
Fatigue to the point of it being difficult to keep sitting up for work, harder to drive, driven to tears several times, arms and legs felt so heavy like moving through mud.

Neck feeling stiff, like someone is holding me by the back of it

Feeling off balance when standing and walking felt different, couldn't keep my normal gait

Tingling in hands

Fell going down the stairs at home once

Also, this has been going on intermittently for some months now - periods of one ear turning red and feeling like it's burning, face near it feels tingly on cheek and jaw. Feels like it comes on randomly, sometimes sense of pressure around and in ear

No vision changes whatsoever

Today as I'm writing this, the fatigue hasn't been as bad over the past 2 weeks. But I'm still having balance issues, tingling in hands, and my left ear and side of my face have been burning/tingling all day.

I've only told my aunt and husband about it. It feels so vague and I'm very hesitant to tell other people that I'm struggling, especially at work. I also struggle with feeling like a hypochondriac. I'm scared though. If there is a diagnosis that explains it, even if it is MS, then I want to know. But I also am scared of MS as my mother has it, and her mother had it too. My mom has had a very difficult course since being diagnosed in 1996 - she was paralyzed by 2002 and has had a lot of complications. I felt like I needed to get some of this off my chest and don't have many people I feel safe to turn too, so I sought a board like this out. Any tips for coping with this uncertainty or just any words are much appreciated.

  1. Hi . I am so very glad you found us. My heart aches for your mother. I can see why her experience makes you so nervous. Please know that every MS journey is different. That's why they call this the Snowflake Disease. If you are diagnosed, your journey might be nothing like hers. Many people live long and fulfilling lives with MS. Also, treatment protocols and medications have changed since 1996. If you get on medication to slow your progression immediately, you might find it has a huge impact on your future with MS. The medication is insanely expensive, but most drug companies have financial assistance programs with generous income guidelines that will cover all or part of the cost. Medicare is also changing. In the future more medications will be covered. It is possible you had MS three years ago, but that the lesions were still too small to see or the machine was not of high enough quality. If you do have MS, it is likely lesions will show this time around. But if there are no lesions, please continue to push for answers. Clearly, something is going on and the lack of a diagnosis is causing you stress. you deserve to be heard and your deserve answers. Here is an article that describes some of those other health conditions: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. Feel free to vent here any time. That is what we are here for -- to offer support and a safe place to vent. Keep us posted if you don't mind. We will be thinking of you. Gentle hugs. - Lori (Team Member)

    1. thank you very much for the kind words and support. Both my aunt and my husband offered to go with me to the neuro appointment this week which I appreciate. I know there may just be more testing after this, but hopefully I'll come away with some answers.

  2. , I think Lori pretty much said it all, but I wanted to let you know that we are thinking of you here at MultipleSclerosis.net community! I know not having a firm diagnosis can be very frustrating and nerve wracking. So, I do hope you get a diagnosis very soon. I do hope it is not MS, but perhaps something that is easily treated. As far as feeling anxious, you are definitely not alone in this! I wanted to share a couple of conversations from our forums about that time before you have received an official diagnosis -- https://multiplesclerosis.net/forums/awaiting-diagnosis and -- https://multiplesclerosis.net/stories/frustrated-awaiting-diagnosis.


    I don't think you're a hypochondriac and I think all of your feelings are very valid. Please feel free to come here as you wait for that appointment (and those test results)! We're here for you and happy to help in any way we can.


    Best, Erin, MultipleSclerosis.net Team Member.

    1. thank you very much for offering support, I'm keeping this page open on my phone and learning what I can from the other posts!

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