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Avatar universal

New here....

I have been shadowing this site for a little over a month now and thought I'd chime in. I am a 33 year old woman with five kids. In the beginning of August, so, about 3 months ago, I noticed I had a headache that wasn't responding to painkiller. At the same time I had fatigue and nausea(more nausea when my headache would increase)  I went to the urgent care and they checked for mono, low thyroid, pregnancy...etc etc. Didn't find anything and sent me home. A couple of days later I had chest pains and shortness of breath, and was feeling so fatigued I could barely get up the stairs from our basement. Back to the doctor and they checked my heart and did a chest xray, found nothing and sent me home. Fast forward about a month, I've had a clear lumbar puncture, clear MRI and have been sent to a neurologist, he discovers that my ANA is 1:1280 and sends me to a rheumatologist, the rheumatologist finds nothing after many more tests and sends me back to the neurologist. During this time of being passed back and forth more symptoms developed. I had numbness in my face, tongue and lips and all along my left side, my arm and leg had a cold sensation in them but weren't cold to the touch, muscle aches and cramps came and went, I started with a weird muscle twitch in my neck, I would get horrible stabbing in my chest where it would hurt to breathe in deep and than it would go away. My arms and legs feel weak and tire easily, my eyeballs are achey and hurt to look around, I've completely given up wearing my contact lenses. I have ringing in my ears and a black spot in my left side vision. My headache will NOT go away. The neurologist put me on Neurontin which is helped immensely with the numbness and tingling but I still have the fatigue, headache, ringing in ears, weakness, trouble thinking and remembering, chest pains and so many bladder infections. The neurologist said it would be good to go to Mayo Clinic in Minnesota as he doesn't know what to look for next, I have an appointment in one week exactly. I was wondering if anyone has any thoughts as to what I might expect when I get there. I guess I am going in to internal medicine and will be there a week getting different tests. I know that some people on here have expressed that Mayo ***** for MS diagnosis. At this point I feel like I probably have MS, I can't imagine what else it could be. The neurologist said that we couldn't rule it out yet....I hope I'm not going to the worst place in the country looking for an MS diagnosis! That's my story, just thought I'd share...not sure what is ahead for me. My mom (bless her heart) has been taking care of me and my family since Sept. Some days I am literally bedridden with pain and fatigue. She lives 7 hours from here so it is a big sacrifice for her, but I thank God for the help. Blessings to you all!
7 Responses
738075 tn?1330575844
Hi, there, and Welcome!

I'm sorry you've been so sick!  And with 5 little ones?!?  Thank goodness your mom can help.

I know the idea of Mayo being a bad place to go for diagnosis has been passed around, here, but at this point in the game, if I were in your position, I'd go to the appointment with a clear and open mind.  Don't convince yourself it is MS just yet.  If Mayo can give you a diagnosis and treatment, great.  If they can't, and send you on your way, find another neuro.  

As you've probably read, after lurking here for a bit, MS is very difficult to diagnose.  I hope you've had a chance to look at our Health Pages (links on the right side of this page).  They're full of all kinds of info regarding MS and diagnosis.  Not everybody gets a "slam dunk" diagnosis, and for some folks, diagnoses are made and taken away several times.

Good luck on your path, and please keep in touch.

Feel better soon!
Avatar universal
Thank you for the kind welcome and the encouragement! I agree, I am going to try to go to Mayo with as open a mind as I can get! It's bittersweet to keep getting all these negative test results, of course I don't want to be sick, but I KNOW something is wrong, and just want answers. I'm wondering what tests they will put me through and am nervous about it all. My last LP I ended up with a horrible spinal headache for a whole week before they could get it patched. I will try to come back and post how it went at Mayo! Thanks for the good thoughts!
987762 tn?1331027953
COMMUNITY LEADER
Hi and another welcome and recommendation from me to keep an open mind about what could be causing you these things. From my perspective I wouldn't think MS is the most likely explanation, because your sx's have multiplied and spread to other areas far too quickly for what's typically seen in MS.

You haven't mentioned any abnormal neurological testing, to make conditions like MS a likely cause over any of the mimics, so it would be a very good idea to stay open minded. I suspect the recurring bladder infections 'may' have something to do with this, because they can be a bigger problem if the infection keeps coming back, and your immune system is working over time whilst your getting more and more run down by it.

Let us know how you get on and give your mum a hug and a kiss for stepping up whilst your in need........bless her warm heart!

Cheers............JJ    
751951 tn?1406632863
Have you discussed the possibility of fibromyalgia?  Just a quick impression that came to me.

I agree with JJ: thank God for your Mom!  Blessings to you & yours, too!
5160872 tn?1385248794
Hi. Wow, we have a lot in common! I am also 33. It is so frustrating when answers seem so far off and everyone and their brother wants to tell you what they think or what they had! lol When I became sick, I had several people bring me books. I think at one point I had over 10! I know they are trying to help, but I didn't feel like reading.

I am sorry you are sick and feel so bad. I do know what it is like. My symptoms started with headaches. I am glad you have your mom there to help you. I hope you find answers soon!
Avatar universal
Thank you for the responses everyone! I am actually here at Mayo right now and am headed to my first appointment in the morning. Not sure if we'll find ms, but at this point I'm really just hoping for an answer of SOME sort! I'll try to update if anyone would like to know how it's going...??
751951 tn?1406632863
I will be reading.  Best wishes to you & yours.
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