New here
 

Hi, my name is Jess and I’m new here. *I think that I may have MS. *I apologize ahead of time if this post is long!

My symptoms started about 2 years ago. *It was 4th of July weekend 2013 and we were hanging out by the pool with the inlaws when I started having spasms in my legs. *Later that day I felt so weak and fatigued that I stayed behind while everyone else went to dinner and to see the fireworks. *I just slept for hours and barely made it up the stairs. *I remember having a feeling of vertigo when I lied down.

I saw my GP, a few neurologists, and my rheumatologist (fibromyalgia) over the course of the next year, and they ran lots of bloodwork and MRIs of my brain, C spine and T spine, but no one could tell me what’s wrong.

The weakness and spasms continued in my legs and then in my arms, along with tingling and some numbness too. *It was a bit better in the fall & winter of 2013, but got worse again in the spring of 2014. *At the time we were living in a townhouse and stairs were so hard that we had a new construction house with the master & laundry on the first floor built. *I started to feel better around October 2014 and we moved into the new house in November.

I had a pretty decent several months until 3 weeks ago. *The weakness and spasms along with some tingling is back, and even worse. *It started back up again suddenly one day. *I am having trouble walking, shuffling along pretty slowly. *I feel unsure of my balance because of the weakness in my legs. *I am also having some trouble with my grip and dropping things.

Previously I felt like the weakness and spasms were even on both sides, but with this latest flare-up the left side is definitely worse than the right. *At this point my bloodwok and MRIs are 1-2 years old. *I saw my GP today and she ordered more bloodwork, and I see neuro #4 on June 10th.

I just have this sinking feeling that MS fits my symptoms and that’s terrifying!

Sorry for the weird * in my post. Not sure what happened!

Hi compchick,

Welcome to NeuroTalk!

Don't worry about the * .

They sometimes appear on posts. I think it's something to do with phones... not totally sure, but I've seen it before many times.

take care.

Welcome Compchick, nice to meet you. So sorry as to why you're here,
but glad you found us. It's late, so I won't go into a lot of detailed writing,
just wanted to welcome you and say good luck with your new tests.

:grouphug:

Welcome to the boards, I sincerely hope you get a dx soon. Many of the sx are seen in MS, but there are numerous other disorders they could be associated with as well, some worse than MS some better.

I'll not say that MS isn't a terrifying prospect, however things have greatly changed in the community from ten and more years ago. There are far more disease modifying drugs and therapies out there to try and slow and stop progression, and more medications and therapies to help with the symptoms you have. Sure we might never go back to 'normal' though there a few who end up better than normal.

Do your best to stay positive, and be proactive. Stay as active as you can while waiting for your dx, if you smoke, quit, and eat a well-balanced diet. Keep track of your sx, along with anything that seems to be a trigger, but don't confine yourself simply to "this is an MS sx, or trigger", simply put down how you feel and what you experienced before hand.

Also, prepare yourself for a potential long haul if MS is what you suffer from, most of us get the dx simply because we're the square peg that doesn't fit the round hole of any other disorder. Though yes there is still the McDonald criteria, O-band presence in LP and lesions on spinal or brain MRI's that may speed up the dx, but many times doctors still are reluctant to pass down the dx until they have ruled out any other possibility.

Be patient, but firm with your doctors and never fear asking for a second opinion. It's also a good idea to keep track of your medical records, don't let doctors write you off because "these blood test" show you're fine when there's a significant discrepancy in tests you've had prior. Even if you're not sure if they're significant differences, if you have a question, ask the doctor outright. If uncomfortable in doing so, see if you can't find a friend or family member who can act as your advocate.

Just know you aren't alone, and we here on the boards will always be around to lend an ear, offer some advice or to simply share a laugh :hug:

Thanks for all of responses! I am trying not to make assumptions but at the same time trying to be prepared. I am lucky to have a very supportive husband and family.

I have been keeping all of my test results, MRI discs, etc. for years because you never know when you will need a second opinion. I also like to keep informed and be my own advocate. My GP is great and agrees that there is something wrong, whatever it may be.

I use the WebMD Pain Coach app to track symptoms. It isn't obvious but it has a PDF export, but I wish that report was more detailed.

Thankfully I'm having a not-so-bad day so far today!

Welcome Jess!

It's great that you have your records as that will make it easier for you and your doctors. I'm glad you have a supportive doctor who listens and believes you. That is so important.

I hope the appointment with neuro #4 goes well for you and you get the answers you need. Have you been following up with a rheumatologist as well? That is important too as you may have some sort of rheumatic disease that's causing some of your issues.

Hang in there and let us know how your appointment goes.:hug:

Yep, I saw my rheumy again this week and she also suspects something neurological, but ran bloodwork including Lyme and several autoimmune tests as well as thyroid just in case. I hope I get some answers soon!

welcome jess to NT

you've come to the right place for info/support.
and cudos to you for keeping medical records. i learned the hard way that it's very important.

sometimes getting a dx (MS or otherwise) is a relief because then you know what you're dealing with and can make a treatment plan.

it sounds like you have good drs and you're a strong advocate for yourself.
keep up posted.

Welcome! Along with the MRIs there should be a MRI report? They indicate nothing abnormal?