2208858 tn?1339188063

newbie in limbo

Hello all =) I've been having issues for quite a few years now. I've never really put them all together until recently. My family doctor thinks I have an auto immune disorder due to a positive ANA test. She sent me to a couple Rheumatologists which either thought I was faking or decided it was due to other things. My family doctor finally decided to send me to a diagnostic rheumatologist but my appointment isn't until July. I decided to do some researching myself and I keep coming back to MS. I went to the ER a couple nights ago and they told me I need to see a neurologist. So I found a neurologist that also specializes in MS, but of course, my appointment isn't until July. Hopefully I can finally find answers. Some of my symptoms that I have are severe fatigue, muscle weakness, random pain usually in legs, vertigo (which I never thought could be part of this), facial tingling, and heat intolerance leading to black outs. The facial tingline I've had for quite a few years on and off, never thought anything of it, but recently it has been lasting longer. This last time is why I went to the ER, it lasted 6 hours. I think what makes me frustrated the most is not being able to excerise like I used to. I seem to hit this wall and I can't get past it no matter how hard I try. I usually get over heated and feel like I will pass out. I used to run at least a mile everyday and now I can barely walk a mile without my legs tingling horribly or feeling numb or just weakness.

Ok thanks for listening. I'm hoping I'm in the right place. Seems like I am =)
12 Responses
Sort by: Helpful Oldest Newest
2208858 tn?1339188063
Haha Sumana... I'm a paramedic and I think doctors get annoyed with me cause I talk to them in medical jargon. I think thats why I tend to google more about symptoms. It's very frustrating when no one believes you. =/ Thanks to this discussion group I've got a date with a neurologist who specializes in MS. So we'll see how it goes =)
Helpful - 0
1394601 tn?1328032308
Dr. Google dxed me.  After searching ten years, one night I sat and wrote every symptom I had into google and up MS and ALS popped.  I left the neuro I had been seeing making an appointment with an MS specialist that practiced at a major hospital.  A day after my first appointment with her I was dxed.

That Dr. Google is a smart woman.
Helpful - 0
572651 tn?1530999357
you are definitely in the right place - we are happy to kick around ideas and answer questions.  Family history of aneurysms?  Me too and I have a small one of my own.  Good for your doctors to take a closer look.  Come back and tell us what else is going on. -L
Helpful - 0
2208858 tn?1339188063
Thanks Kyle. I have an MRI scheduled for the 18th of this month. I have a history of brain aneurysms in my family so they are making me do it lol. But hopefully one will be enough and my neurologist can check it out. I've had numerous blood tests for things already with no luck. No Lyme, no myastenia gravis, and most of my blood work always comes back good, which stumps everyone.

I'm excited because I got a membership to the Y today so I can do water aerobics =) Feels great working out in the pool. Hopefully I will be back to running and normalcy.

Thank you guys for listening I really appreciate it!

Helpful - 0
2202709 tn?1338755799
there is a limbo page if u click on forums go down to bottom hun xx
Helpful - 0
1831849 tn?1383228392
Hi Ashley,

Sorry you needed to find us :-) Much of what you describe, in terms of the symptoms and timeline, sounds familiar. I had a bunch of niggling little problems that I never connected and on their own didn't seem to merit extensive investigation.

I did have a couple of 'major incidents, one 21 years ago and the other 3, that while investigated did not yield answers. Last summer the bottom dropped out (exhaustion for no reason, muscle weakness, double vision, inability to walk in a straight line). It was, and is, MS; all of it including the niggling little things :-)

You are at the start of what can be a long journey. Write everything down; symptoms, duration, conditions when the appeared. Get copies of all of your test results including blood work and radiology reports. It is very helpful to have your history and results together. This way you can provide copies to all of the docs you may see.

The MS diagnosis includes blood tests to rule out all of the many MS mimics like Lyme disease. It will also include MRI's of you brain and c-spine. These MRI's should be done both with and without contrast. You may need a lumbar puncture (spinal tap). These are not necessarily as scary as they sound. Mine was pretty uneventful.

As others have said, MS is a slow moving disease so there is no need to rush breathlessly :-)

Good luck on your journey. Keep us posted.

Helpful - 0
2208858 tn?1339188063
Thanks Tammy and Bubbles. :-)
Helpful - 0
2202709 tn?1338755799
hey iam also in limbo, so here if u wish to chat its so hard being here. ive spent hours and days researching and drove myself mad! we really have to just wait for a dx and i know its hard. there are so many things it could be sjogrens, lupus, fibromyalgia on and on lol.
wish u all the best and hope u get a result soon :)
ky xxxx
Helpful - 0
2015036 tn?1332997788
It certainly won't hurt to have a neurologist assess you.  You should probably type up a history if you can remember approximate month/year and duration for your symptoms.  He or she may recommend an MRI to rule out possible lesions.   Then other tests from there.  Just be prepared, because MS is a slow disease, and the dx can be very slow too.  Don't give up though.  Eventually whatever is wrong will be figured out.  But before they can diagnose ms, they have to rule out all the mimics first.

Welcome, please feel free to stick around.
Helpful - 0
2208858 tn?1339188063
Thank you :-) I'm not getting my hopes up or down but trying to get results.
Helpful - 0
2098121 tn?1339098696
looking on the internet at symptoms is a bad thing, you will always come up with aids, cancer, m.s and all the other diesease's that scare us senseless,
your symptons sound the same as my daughters who has seen a few doctors but a month ago she saw a neurologist who diagnosed her with fibromyalgia, which as i said displayed all the things you metioned, so please dont freak yourself out just wait to see your specialist and let them do the working out. its not always the worse things
best wishes
Helpful - 0
2063887 tn?1337829746
Welcome Ashley!  There are lots of us here who are diagnosed and lots of people who are still in limbo.  I think you are on the right track scheduling an appointment with the neurologist.  There are lots of diseases that mimic MS, but he/she will be able to help you decide what tests need to be done.  The symptoms you describe are very similar to many of mine.  I was diagnosed in November 2011 after having symptoms for over 6 years.  In October I finally had a relapse that didn't leave much room for doubt.  Although many of the symptoms got better, there are also those that haven't completely gone away.

There are health pages on the right side of the screen that offer lots of information and people here are always willing to help when they can.

Getting into a neurologist is never a quick appointment.  If it is MS though, it moves very slowly so be patient and take good care of yourself with nutrition, rest, and exercise that you are able to do without causing yourself further issues.

Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1331027953
5265383 tn?1483808356
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease