What do I do now?

[swimbikerunsurvive]

I'm in limbo at the moment, with a constant headache, visual disturbances, extreme fatigue, muscle twitching and spasms, weakness and numbness on my left side, trouble speaking, extreme brain fog, memory loss, and tinnitus. This has been going on for 9 weeks.

I saw the neurologist on Monday and he sent me to get an MRI. Wait times in my city are very long, so we decided make the appointment at a hospital an hour and a half away. Today I found out that the appointment isn't for another 6 weeks. I shudder to think how long I'd wait in my city if 6 weeks is "much faster".

I know some people are in limbo for years, but I'm not as strong as these people. I'm 19, working three jobs, in school full time, and have to pay for rent, groceries, etc etc. I'm exhausted all the time and I'm starting to really struggle with this pain and these symptoms.

What am I supposed to do for 6 weeks before I can get the MRI? I feel like I'm walking on egg shells, too afraid to do anything for fear of making myself feel worse. I can't see myself lasting like this another 6 weeks. What have you guys done to help while you're waiting for tests or appointments? Mentally I just don't feel strong enough.

[22cyclist]

swimbikerunsurvive: I am sorry you are feeling bad. However, an MRI is not going to make you feel better, neither will a diagnosis of anything. Especially with MS. You have had this for 9 weeks, perhaps it will stop before the 6 weeks you have to wait. You could ask your neurologist for some steroids to see if they help. He may or may not do it.

The one thing I want to reassure you about is that if this is MS, there is nothing you can do to make it worse (besides sit in a hot tub all day.) So, stop walking on eggshells.

We all understand how much it sucks to feel bad and have to work and juggle school and/or kids so I am sorry for that.

You will make it 6 weeks, one way to deal with this is to simply not think about it. By that I mean don't focus on it. Either the timeline or your symptoms. If this turns out to be MS, a tumor, or something like that, you will have to learn to deal with the symptoms, so you might as well start to practice.

If you have a bad day, get on here and rant about it. We understand. You are just at the beginning of trying to figure out what is wrong with you. We are here for you so try not to worry. No matter what it turns out to be.

I have had to wait 5 weeks for an MRI more than once, and I already have MS, but I am on Tysabri so it was important. I live in the US. Thats just the way it is sometimes. You will be OK.

Don't forget to ask the doc for some steroids. Let us know how everything goes, OK?

Take care
Lisa
Moderation Team

[aspen]

Well ... where you can, you find help. Where you can, re-prioritize -- is there something you can drop? Do later? most important, get enough rest. Do you have family nearby? Friends?

Otherwise, you just push through. I've been doing this, with varying degrees of success, since January. I can't believe it's been almost a year!

Distraction, deep breathing, and as Lisa said first, come and vent here. Tonight (Wednesdays) at 8:00 pm EST is the patiently waiting chat. I find it therapeutic to chat with those also stuck in diagnostic limbo-land. Just the fact that others are pushing through .. surviving ... and having some degree of acceptance of the process.


Do make sure you call the mri clinic (or have your doctor call) and get on the cancellation list. I made in to a cancellation with a same day phone call, 2 hours before the appointment, in a city an hour away.

Be warned though ... it is early in the process and the mr image may not yet show anything substantial. You very well may stay in limbo. Someone here said "MS is a slow train." It's most important at this stage that mimics be ruled out.

I would also suggest, although you are busy, that a counselor would be helpful. I NEVER thought I would ever need one ... but I see her every other week and I only wish I had started sooner.

It is very difficult to not think about symptoms, as Lisa suggests, in particular when your leg is bouncing, you are falling, dropping things, forgetting everything or using ridiculously embarrassing words in conversations with people you are trying not to alarm. I get it (btdt). Just make sure even if you go there, you keep trying to refocus on something that is not how you feel. It's a process.

I think, as well, that it easier to take this advice once there IS a dx ... then there IS an explanation for the stupid ... than while in limbo. (If NOT ms ... then whatonearthiswrong??).

Just some ideas ... and perhaps we'll see you at chat tonight ..