Limbo land - what you can do while you wait for an MS diagnosis

Waiting for a potential multiple sclerosis diagnosis can be daunting. In this episode, we explore the "limbo land" time during your first appointments and a possible MS diagnosis.
Neurologist, Dr Emma Tallantyre, joins us to talk about the importance of reaching out to your healthcare professionals, managing stress and more!
We discuss the roles of neurologists and the tests you might go through. Plus, we cover some top tips for preparing for each appointment and what to do next.
Listeners will gain a deeper understanding of the diagnostic journey, treatments, and the value of support from healthcare professionals, family, and friends.
Listen now for expert advice, personal stories, and community support.
Show notes
- Worried you have MS?: www.mstrust.org.uk/informatio...
- MS Trust what is MS?: www.mstrust.org.uk/about-ms/w...
- MS trust how is MS diagnosed?: www.mstrust.org.uk/about-ms/w...
- MS Trust newly diagnosed: www.mstrust.org.uk/about-ms/n...
- MS Trust A-Z of MS : www.mstrust.org.uk/a-z
- MS Trust questions to ask a health professionals: www.mstrust.org.uk/a-z/questi...
- MS Trust contact us: www.mstrust.org.uk/what-we-do...
- Diagnosing MS - Lumbar puncture video: • Diagnosing MS - Lumbar...
- Diagnosing MS - Evoked potentials tests video: • Diagnosing MS - Evoked...
- Diagnosing MS - MRI scan video • Diagnosing MS - MRI scan

[@carotha64]

I have all the symptoms of MS (double vision too, but not optic neuritis). I’m struggling to walk, have severe muscle pain, mainly in my legs, weird numbness/loss of sensation that has been spreading for years now, nausea, dizzyness, gastrointestinal problems, problems with sexual dysfunction, problems with bladder and bowels, electric shock when I turn my head (not every time), unbearable itching whenever I get out of water or brush/bang against something… You name the MS symptom, I probably have it.
My brother has MS, and he believes I do too. I do have lesions on my brain consistent with MS, but ALL my tests have been normal. We even did a lumbar puncture. Normal.
So I have no diagnosis, and my doctors feel there isn’t anything else to do. But I was an athlete. I was a graceful dancer and martial artist. And suddenly, I lost it all. I can’t walk very far without cramping up, and if I push it, my legs will buckle and give out. I struggle even to push an empty grocery cart. It’s like my body doesn’t remember how to work.
I’m really scared it will just keep getting worse. Meanwhile, no one believes me but my brother, and there is no treatment for me. I would do better with keg braces, but I can’t get my doctors to take me seriously. One said, “Let’s try Lyrica for merve pain, and maybe if you have less pain, you won’t have to walk so slowly.” I don’t walk slowly because it hurts! I walk slowly because my legs don’t work! I don’t know how else to say it!
I’m scared and alone and feel like I’m watching life from the outside now.

[@carotha64]

Sorry about the typos. I’m also having trouble typing the right letters.

[@mstrust]

Thank you for sharing what you're going through. That must be such a difficult situation to be in. If you're UK based, we have a free, confidential helpline. They offer information and resources that could help.
You can contact them via phone or email.
pulse.ly/sy3isx9tri
Sending you best wishes from the MS Trust. 💙