Last reply 6 months ago
Super new to this

Hi

I just got diagnosed February 3rd. I’ve seen a neurologist since then, and he said that in my papers, everything looked benign and so he didn’t want me to start meds. By the time I saw him I was exhibiting almost no symptoms, as I had started on psoumedrol (or however it’s spelled) as soon as I went to the hospital and got diagnosed. I think it was 3 weeks ago when I saw him. Anyway he said he was going to ask the hospital for my MRI and spinal tap results to confirm it being benign, and that he would call me back.

So last Friday (over a week ago) I start feeling like my legs just going numb here and there. So I call on Monday to try to make an appt with said neurologist, and they tell me that they actually made a referral to me to get a second opinion. So fine, but it’s at UCLA and apparently it’s going to take forever to see them because my case will get reviewed by 80 doctors throughout 7-10 business days and THEN I can make an appt. so in the meantime I have a couple questions maybe some of you can answer:

1- I looked up a lot of stuff to see if I should go to the hospital rn, and it seems I should only go If the symptoms are really bad right? I haven’t fallen or anything my legs just kindof giving out every 10minutes or so.

2- is this probably part of the same episode?? I hadn’t been totally symptom free for 30 days since the last/first one. But it’s a different symptom entirely… or is it possible this is just a new way of life for me, with my leg just giving out all the time?

I guess those are most of my questions for now. I truly appreciate any feedback or insight. Thank you.

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aabreu
6 months ago

Hi. I’m very sorry you are going through this. I know this is all very new and scary.

You could be waiting months to see a neurologist at UCLA. If you having new issues, I would be telling someone. If you are having leg weakness, it makes me wonder if you have something going on in the spine. Inflammation. It’s sunday, so you’re not going to be able to call the nurse the neurologist office. Right? If so, It sounds serious enough to me that I would go to the ER. Then you could get to see a neurologist on call ASAP. They could put you on an IV steroids to reduce inflammation.
Once you get this thing under control, then you can worry about the people at UCLA.
God speed


lisafer
6 months ago

Thank you. I’m going to call the first neurologist I saw tomorrow and ask them what they think, but thank you I think I’m realizing maybe I should try to get treatment sooner.


Anonymous
6 months ago

Wouldn’t asking your family doctor or telling the neurologist what’s going on be better then asking medical advice online. Just my opinion. Btw your leg will get worse so I’d try to see anyone if I was you.


lisafer
6 months ago

I guess I didn’t explain myself thoroughly enough. When I talked to my neurologist about the referral I did ask if I should go to ER and all he said was, well if you start having worse symptoms definitely go. And in the meantime? I asked him. And he said to focus on seeing them in UCLA. I told him it seemed like it’s going to take a while and he said if so, to call him back, so that’s my plan for today. In the meantime I thought maybe this community might be able to shed some light on the situation. For instance if everyone was like, go to the hospital, or even the opposite, then I thought I could get a better idea of what to do. I want to go to the hospital to be safe, but I can’t afford to be out of work 5 days again and my skin had a really bad reaction to the steroids. And the spinal tap ended up making my back hurt really bad for 5 days. Anyway, this is all going into my decision or lack thereof. But either way I’ll call my neurologist today and try to get a firmer response from him now that I’ve confirmed it will Indeed be weeks before I can see the neurologist at UCLA. Thank you for your insight though.


stumbler
6 months ago

@lisafer , I always get a bit concerned when recently diagnosed MS is called “benign”. Well, it wasn’t benign a few weeks ago when you got diagnosed!
 
Whilst the numbness on your leg does sound like a new symptom, I wouldn’t consider going to the ER unless it was having a major, and dangerous, impact on your life.
 
Your present Neuro is presently your best place for advice, but you may need to “lean on him” a bit. If you’re in favour of starting a treatment to address the MS, then waiting for UCLA seems a risky way forward, so he needs to make a decision on this.

Be your own advocate for the outcome you want.

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