I have been extremely dizzy and trouble walking for about 12 days. I went to ER to see what they could do for me. The did an MRI and it showed 30 more active lesions since August. It is in the cerebellum and is causing being extremely dizzy. Nausea and trouble walking. Trouble writing and trouble speaking. No appetite, hardly drinking water. I have been lucky in15 years but this scares the hell out of me. See my neurologist Friday to get a plan. It will probably be tecfidera. No more tysabri. 30 new lesions is a lot right? Any advice or suggestions or questions for my neurologist is greatly appreciated.
Thanks
Jenny
Written by
jkdavid99
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Sorry to hear that you’re showing activity with your MS and glad you’re seeing your neurologist on Friday. My only suggestion is to voice all your current symptoms, questions and concerns. Good luck.
Jkdavid99, it's Fancy1959. Take a deep breath and try not to let the stress you out completely. I know right now you're so scared and I wish I could be there 2 give you moral support. In the meantime the best I can do is to send an electronic hug to you through this Electronic Connection.
I too have had issues with my MS attacking my cerebellum. My cerebellum has atrophied back away from me cavity designed to protect it a good 25%. That's why my balance and I walking so extremely poor. We can't forget that the cerebellum is an extremely important center in our body and it regulates and controls innumerable other functions in our body.
I agree with Royjr. Make up a log of the symptoms you've had for the last couple of weeks as close as you can remember. Take all the notes you have the hospital ER with you take your notes and questions in your log with you. I am certain you will get lots of responses from the chat room about different Therapies. Jot them down and any questions you have about them or information you think you found out about them. The more information you can walk into your neurologist office with the better off you will be able to understand what options are out there for you.
I am currently on a new DMT that was approved about a year ago. It is called Ocrevus. To find out information about this therapy you could start out by going to a post I did back several months ago called Ocrevus Poll. Then take notes you might have from the responses to the Post and from there you can also find a lot more information on the internet. Try to do that with every therapy that people respond back with. Then go into your neurologist tomorrow with questions and information you have gathered about different Therapies. Hopefully you wind up with a half a dozen or more ideas to go into your doctor with tomorrow. Please take it easy and be careful with your balance in your vertigo. I will check back in and you can feel free to contact me anytime you want someone just to vent at or a shoulder to lean on. I know it's hard to remember but you must realize the options out there today are numerous so don't give up hope. I am sending hugs and prayers your way. Fancy.
So sorry for this shocker. When I was diagnosed at Mayo clinic 13 years ago, in the midst of a bad exacerbation, their main concern was slowing down the current exacerbation. 5 days of solumedrol worked for me. However, they were considering plasmapheresis. Not sure if this is still an option, but I thought I'd mention it. You are in my prayers.
Oh no Jenny, I'm so sorry! Any new lesion is a lot when you're on Tysabri, but 30 is absurd 😭😵 Have you tried crystal light lemonaid? Sometimes it's the only thing I can get down and most hospitals have it. Or ice chips can even help keep you hydrated. Please keep us updated! Rest up 😘
Oh bless u hun u really need to speak to ur Neuro thank goodness ur seeing them to discuss ur symptoms and ur MRI. I'm having my Tysabri tomorrow but u definitely need to change the DMT to something that works for u xxxx
That must have been quite shocking to hear. I’m sure the neurologist will discuss the location of the new lesions, why they occurred, and where you go from here. I don’t know when you had your last MRI, but it may not hurt to ask if they are being done often enough to evaluate your DMT’s efficacy.
I’m sorry you’re suffering. You’ll be in my prayers. Please keep us updated.
jkdavid99 I'm sorry you not doing well on your current therapy. A switch is definitely in order. You have already received a lot of great suggestions, so I wish you luck tomorrow on finding out what your next step is. Please keep us updated when you can.
Oh my, I sure hope you can get into your MS doc asap and get something that will help slow or stop those lesions and help stop the dizziness, etc. Blessings, Lynn
Sorry to hear about your relapse. Are they putting you on solumedrol to stop the progression? I hate that stuff but it helps until you can find another DMT. Please make sure you tell your doc when the symptoms started & every detail you can think of even if it doesn't seem relevant. Try if you can, to figure out what might have triggered the relapse, like a new daily routine, new exercise, weather changes etc. For me the weather changes set my MS off and running. I had a bad enough relapse last year that I had to go for a 3 day solumedrol drip, all due to the weather heating up to 100+ with high humidity. It looks as though the weather is going to do that again next week. I'm staying inside air conditioning this time!
Prayers going out for you to start feeling better soon & can find out what caused it soon.
Thank you all.for your comments. Went to neurologist today and looked at 30 active new lesions. I am done with steroids and out of hospital. Now to get better. I am thinking of trying tecfidera. But I have to get started right away. I cannot stay awake. Even with steroids. I have no appetite I mean zero. Is that a side effect of steroids? And I love food, any suggestions anyone has I would appreciate it. I need to eat to get better. This has been the worst relapse ever. It sucks
I get very sleepy with steroids as they are sugar based and make my blood sugar sky rocket, and im not a diabetic. When I have a loss of appetite, I to eat a little something every 2 hours. Can you drink smoothies or Ensure?
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I can see light at the end of this dark hallway.
New and scared - possible MS? 
Is MRI of the brain enough for exploring MS?
What would be the reasons for immediately starting me on tysabri before trying anything else? I thought this was a last resort.
St. Louis Area Warrior
