Here is a bit of backstory. I was diagnosed with highly active RRMS 3 weeks ago. Started steroids straight and all my symptoms went away. 2 weeks ago i started tysabri. Luckily no side effects yet other than a skin rash that lasted 2 days.
To make myself feel better, i joined my family on a holiday down south. However when i went to the beach and to the sea, i started to get veritgo. Looking at the waves made my head spin and felt really lightheaded. I felt really unbalanced and needed to leave immediately. When i started to move away from the waves i felt better, once i had sat down i was completely normal again. I have never in my life been like this around the sea and waves.
Should i be worried? Do i need to tell my nurse? Does this mean my DMT is not working for me? Im scared
Hello, probably best to tell your MS Nurse. I always let mine know if anything changes.
Looking back, I think that although I didn’t know it at the time, vertigo might have been one of my very first symptoms . I used to be a hill walker and suddenly found that I was developing vertigo even on some gentle slopes. My brain was struggling to work out what was the true vertical/ horizontal
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As Hank says, best to mention it.
My RRMS was very active from the start too, and my experience is that those early days can be pretty lively. It is excellent news that you are starting Tysabri. Unfortunately for me, it hadn’t been invented 25 years ago, so it was years before I switched up from one of the weaker drugs, but the last 15 years on Tysabri have been blissfully free of MS relapses. For me it had been a wonder drug and it really can stop highly active ms in its tracks. I hope it does the same for you.
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My first ever symptom was bppv. This was 2/3 years ago and i had no idea it was MS causing it. Yes i agree i need to inform my MS nurse, i will do that at my next tysabri infusion. Just wondering, is there anything they can do about it? Or is this something i will just have to live with now? Thank you 
Thank you. Its so nice to hear that tysabri is working for you, it has made me feel alot better. Ive not heard many stories on people using tysabri as its all new to me. I was worried when they told me it was higly active, i immediately thought i was going to get worse and worse. May i ask if you have the infusion or the injection? Also, are you positive or negative for the PML virus? Im negative at the moment but really worried it will turn positive in the future.
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Infusion, but I’ll take it any way they serve it!
Negative still, as of last check. Still keeping fingers crossed.
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There’s a Tysabri Facebook group that you might want to join.
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Hi
Oxygen therapy has helped hugely with my dizziness and vertigo …
You dont know till ya try.
I wished the neurologist had told me about this…I discovered it myself…research is the name of the game…see what works for you…
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Try oxygen therapy, im an oxygen operator and take oxygen for my RRMS…
Thank you, i will look into trying this
Hi
Depending where you are located in the uk there are numerous charities that have oxygen therapy at very reduced rates…
Darren
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Check to see if you have a local therapy centre.
Neuro Therapy Network | Oxygen Therapy