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Waiting for meds

Hello my names Jenny and new to this forum I was diagnosed with MS in March although symptoms started a year earlier. Covid has held everything up! I was due to have Tysabri but am JC positive. Now hopefully Ocrevus but my white blood cell count low!
It’s so depressing and I feel my symptoms are getting worse! Now need a stick for walking!
Communication been terrible although I’m pushing every week for answers of a plan! Has anyone else experienced such a long wait for meds? I feel like no one is bothering to let me know anything or any reassurance. Feeling very low and alone.

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Hello Jenny

Welcome to the forum. I know a year ago you probably never dreamed you’d want to be welcomed somewhere like this, but I hope you’ll find it a warm and informative place to come for fellow feeling and support.

I’m sorry that I can’t readily answer your questions. I couldn’t take Tysabri because it elevated my liver enzymes. And I was never an Ocrevus candidate. I did have depleted white blood cells (lymphopenia) from Tecfidera, so I do get what it’s like to want and need a disease modifying drug (DMD) and be unable to take one.

However, you are right at the start of your MS journey whilst I’m 24 years in so our situations are totally different.

When you say communication has been terrible, do you mean you’re unable to get any help from your MS nurse? Or the neurologist? If it’s the former, and you have an email address, I’d use it to really spell out how low you are feeling. At your stage of MS, you need help, advice and support and that’s her job. If you are trying to get help from your neurologist, try phoning his secretary and ask for a phone appointment to discuss what you are supposed to do now!

It’s likely that while your white blood cell count is low, you’ll be unable to take a DMD until it gets back to normal levels. But it should do. Your body can be quite resilient and tends to recover itself pretty well. Hopefully soon. That’s a question you could ask your neurologist, what does s/he expect to happen with your white blood cell count? Is it the lymphocytes or neutrophils? While your count is low, you should be protecting yourself as well as you can against viruses (low lymphocytes) and/or infections (low neutrophils).

I do hope you manage to get some real support from your medical professionals soon and that you can start a good DMD as soon as possible.

Sue

Thanks so much for your response Sue. Very helpful. It’s cheered me up just being able to speak to someone. I currently haven’t really been able to speak to anyone I think emailing a list of questions would be beneficial. Thanks so much for your help :smiley:

Oh blimey, I’ve just realised that halfway through my post I’ve assigned genders to your MS nurse and neurologist that may not be correct! I usually write s/he, although maybe these days I should write s/he/they, perhaps I will from now on! Blame it on my phone as my internet service was down!

I’m glad I was helpful. It’s tough being alone with your relatively new diagnosis, regardless of your family or living situation we are all alone with an MS diagnosis. You need support, and if you’re not getting it from your NHS ‘team’, then this forum is available to you.

Sue

Hello my name is Sam and am new to this forum, I was diagnosed with MS in October 2019, its still feels like it was yesterday, my symptoms are getting worse too and feel like an old lady walking with my stick, which really helps alot as my coordinating to rubbish. I think since we had that lockdown with COVID and be ask to stay at home as we came under the guideline not to got out has not helped at all. I then got RRMS, which did not help. Like you where I live there is no support group that I can go to for help or advice, rely alot on internet for information or my nurse when she is bothered to help. Managed to see my MS doctor who has decided at last to have another scan and look at my medication. I know they are not working as well as they use to. Am taking Tecefida twice a day. All I can stay it that things will get better, you just have to remain postive and just keep banging on doors.

Hi Sam thanks so much for your response x

Hello Sam

Welcome to the forum. I’m so sorry there’s no support available to you locally, but at least now you’ve found us :wave: you’ll have the company and support from loads of people who understand what you’re living with.

It sounds very positive that your neurologist is going to do another scan and maybe suggest a more effective DMD.

Let us know how you get on and/or you need anything from us.

Sue

Hi Sue

Thank you for your message. It lovely that we all can contact people for advice and help. It has made my day. Will let you all know whats happening with my treatment and my scan. We all know that the waiting will be a while so will keep you posted when I hear. Hope you are okay. Enjoy your evening.