Long Diagnosis, My Multiple Sclerosis story

Details of my difficult journey to an MS diagnosis.

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People & Blogs

Tags:

• webcam video 026jamie
• MS
• Multiple Sclerosis
• MS diagnosis
• long diagnosis

[026jamie]

Thank you everyone. My struggle still goes on and still no definite answers. An MRI with only 1 spot means it's yet again a waiting game on an official diagnosis. They have to find MULTIPLE sclerosis to be able to call it that. Too bad I have to suffer until then without any effective meds to help.

[MrsLeonard579]

You did a great job! I cried in some parts since I could relate. It felt good to know Im not alone. Thanks for making this!

[026jamie]

@MrsLeonard579 You're very welcome. It was tough to make since it was almost like "coming out". It made me feel so much better though. And people like you appriciating my MS videos is one of the only inspirations I have to keep fighting and try to be an advocate myself.

[026jamie]

Wow, I was so nervous making this but now I feel so much better.

[sleekcartim]

@telemetry9 Im right there with you, stay strong, your day will come. Docs can be incredibly wrong, condescending, ego centric, uncaring etc... I say you call them on it! put that crap right back on them... MS is one of the worst diseases for a doc to stress you about. stress has a direct affect on MS. HEY DOCS, DO NOOOO HARM!

[sleekcartim]

SO glad u did this vid. I have undiagnosed MS. U have it worse than i do. i almost wish i did have it worse & a diagnosis (how screwed up is that?), im sick of docs, friends etc... judging me too. I went thru this BS with another uncommon disease too (UGH), but i was right about that all along too, had to drag my docs around like dead weight for a year, till they FINALLY operated on me. now those some of same docs are doubting me about the MS symptoms, cuz 1st round of tests were negative(ish).

[4KCD]

Hi, just wanted to Thank You so Very much for making this video. I have not been diagnosed with MS but seems everything points to it and my Neuro. thought at one time it might very well be. I am '51' and have had symptoms of tingling and numbness off and on in hands, face, and on top of my head for quite a few years. Now my speech slurs, balance messes up and my walk gets distorted affecting my gait. It's very alarming to say the least. Praying for an answer, so I can get on medication to help.

[jansteveryan]

I understand how you feel. You are a strong person. It's really hard. I have a boy

he's 4 and Autistic. It's been very challenging. I can't lift him either. Your video

really hit home for me. All the best to you.

[singlemomadvocate]

I can totally relate. I have symptoms of MS, but the doctors write it off as "stress". Which is good in that it is not MS, but doesn't help me explain why I miss a week of school. I saw a neuro, I wasn't having symptoms at the time of the visit, but had them the weeks before. He watched me walk, and said I was fine. I was like, yeah I am fine now, it doesn't happen all the time, it comes in cycles.

[telemetry9]

Before I started my tests - I wasn't too keen on doctors. They have now labelled my pain and fatigue and growing lack of mobility as being related to my mental illness. Basically I've been told that it is all in my head.

This happened to me yesterday and now I am feeling humiliated and degraded. I'm trying to stay strong.

Thank you for your story and there's so much of it I can relate to.

[ThePppppanda]

this is amazing you have explained exsacly how i feel, i have been ill with similar symptoms as your self for 2 years and nobody belived me. thankyou x

[rob360ize]

my prayers go out to you, my wife might .....have it to. If our God created this world he can heel this disease.