Undiagnosed condtion, MS-like symptoms

[kalalilys]

Hi,

It was great reading some of the threads here, seems to be a large group with lots of information. I think this is where I need to be right now, as otherwise I am kind of lost and freaking out about things.

I am 29 years old and started having issues with vertigo about 5-6 months ago. The vertigo started to get so bad that I was getting nauseas (tho it has come with or without the vertigo) and then started losing some function in my right foot, the toes just dont really bend much anymore, where as I used to be monkey like with my toes. I started to go see a neuro locally and started some testing. Had an MRI done, came out clear and started with some basic blood work, cbc and such. Only one thing was elevated, an unspecified inflamatory condtion, but not so high my neuro was concerned. Then on July 1st, early evening I couldnt feel my right hand, then started getting blotchy spots of numbness and loss of function on my right side. As I read the kids (I have two, boy 7 yo(former 25 week preemie) and a girl 6yo) I started having trouble speaking. I could see the words, but they just couldnt come out of my mouth right. So I went to my father... we had left my husband a few days prior and told him I think I need to go to the ER. So off I went and after waiting 3.5 hrs, most of the syptoms subsided. The ER doc said it almost certainly is MS, so they called for teh LP and other blood work. When I return to my normal neuro, he said MRI was fine, CT was fine and LP was all good. Nothing seemed abnormal. Well, all except that I had this episode that scared the bejeesus out of me.
So he started me on Kepra for the migraines, meclizine, and fenegran for the dizzyness and nausea and i went on my way. After numerous check ups with him, he finally realized that I lost some mucsle function around my right eye, lost a degree of sight in it and now have to wear glasses to keep it from twitching and have maintained weakness and some function loss in my right body side. BUT, he has no idea what it is.
So I decided to go to John's Hopkins to be seen a few weeks ago. Oh.. I also now have a periodic stutter which is really annoying. I get stuck on words like twitching, when I tried to explain my symptoms to the doc at hopkins.
He says the issues are def. there, but he isn't sure yet what to make of it. So I have a follow up MRI, seeing as I hadn't had one since the major ER visit episode and more blood work. Hopkins wants to review all the work the local doc has done and see where to go from there.

So here I am, numbness and tingling on the right side of my face and eye, tingling right foot and still freaking out cause everything is so damn inconclusive. I am scared that if it is MS, with the strength of the episodes, I will get bad really fast. I have two little kids and am on my way to divorce... i can't be sick.

Any thoughts?

[Karen99]

Hi.  When I'm not feeling well my sleep and it's usual patterns get disrupted.  Makes everything much worse.  I'm going to give it my best shot now.  Good night and good luck in Baltimore.  

[kalalilys]

I am patiently waiting for my tuesday appointment at Johns Hopkins in Baltimore. Its a bear driving up there, but I know at the least i have a really great team looking at my issues.
Its 4am here and I am totally awake.... ridiculous! My right eye is dropped so much its about 3/4 way shut. Fatigue seems to really take a toll.
I am really hoping that I get some answers, and will ask the questions too.

Thanks,

KP

[kalalilys]

Thanks for all the support and suggestions. I started carrying files with all my medical records several years ago when my son was born at 25 weeks and I underwent lots of testing for lupus, blood clotting disorders, you name it I think they tested it. So I have records starting 7 years back. My mistake was not to take them with me when I went to Hopkins, I only took the last 6 months records. So next week when I go up for MRI I will be taking them up as well as getting my records released from my local neuro. After the 14 viles of blood they took last time at Hopkins, I am hoping we will be closer to finding a cause. The fatigue has been killing me the last few days.

Thanks,
KP

[kmil1999]

Wobbly gave you some great advice.  Docs can tell you everything is normal, but you read your own reports and find they looked over somethings.  They can also not have all the results in there hands and totally overlook them when they do come in.

I think US news recently had an article about how many people do not get their abnormal results.

I really don't have anything to add, but wanted to give you some moral support.  You have a lot on your plate and I feel for you.

Try to stay strong, believe in yourself and keep pushing for an answer!
Let us know how you come along.

My best,
Karen

[marvel19]

I don't have any a lot of advice because I am new to this also. I think the thing that has helped me the most is to search until I find a doctor that I like..which it looks like you have already done. I am sorry you don't have answers...It is so frustrating! Especially when going through divorce and having other stressors. It seems like things always happen at once. Sometimes I think our strength is tested so we know how strong we really are.

best wishes

[bearsmum]

Just a suggestion, but next time you see your neuro, ask does he think if it would be worthwhile to do a DNA mutation bloodtest, enzymes, and a Pyruvate bloodtest.  I have very similar symptoms to you and for a long time they thought I had MS but could never get a dx but now after having these tests I have been dx with a Mitochondrial disease.
Hope you get some answers soon and take care
bearsmum

[Wobbly]

you sound like you have alot going on...and it sounds like the beginning of alot of testing.  I went through 4 years of tests and being told everything looks normal..what I learnt was to request and get copies of all the results of everything...tests, MRI.. bloodtests, exams..neuro exams.. everything...

I keep a folder ( a few of them now) for medical info, and I also keep a timeline of my symptoms, so when I see a Neuro or specialist...Rheum.. etc..I take this with me and if they want to see it or keep a copy for the file..they can.  

they usually ask you alot of questions and if you have it there with you, it can be useful to have.

Hang in there and let us know how things go..
take care
wobbly
dx

[HVAC]

Hey it is hard to sort out Neurological conditions, plus there are some non neurological diseases which mimic MS.  Sounds like you are having a tough and scary time.

I do not know what is going on with you because I am not a Doctor. I am a person who got through a two years of tests and was finally diagnosed with MS in April. I was at times scared out of my mind. I at times imagined the worst. I felt very alone and overwhelmed and depressed.

I am sorry you have to go through this. I care,
Alex