Need help! Scared with no answers

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Date Joined Sep 2007
Total Posts : 1
   Posted 9/10/2007 10:27 PM (GMT -6)   
Hi, I am a 26 year old female that is extremely concerned over symptoms that have reappeared after a year and a half lapse.  Alittle backround: Oct 29th 2005 I started having issues seeing the ticker at the bottom of CNN, I could see there were words there but couldnt read or understand them.  It progressively got worse to the point of all peripherial vision loss to the point of not being able to see my arm extended out in front of me if I looked straight ahead.  I drove to work (BAD idea!) and was driving like a drunk person when I got there, less than 10 mins away.  By the time I got inside, I had lost all feeling in my left arm and part of my upper right and also my speech was impacted from what felt like novcaine being injected under my tongue. I also felt extremely weak, like I couldnt pick myself up off the chair.  I called my mom and had an extremely difficult time telling her what was wrong, like I knew what I needed to say but couldnt get it out (not from the numbness either). She has a nursing background from years ago and said I needed to go to the hospital with stroke symtoms. I had to be helped out of the building because I couldnt walk a straight line and by the time I got to the hospital the pain in my head was so intense I would have gladly walked out in front of a bus. The pain was primarily located in my eyes and right behind them, on both sides. 
        The following night, same thing in the middle of the night.  Another again two days later, but with no pain this time. Just sight loss and lack of feeling and weakness.  Two days after that, I had another massive 'attack' and landed in the ER again, this time the pain not being as bad but the other symptoms worse.  The first ER visit they did a CAT scan and it revealed noticable lesions. On the second ER visit they finally did an MRI and it apparently came back ok, not having insurance I was of the lowest regard to the doctors so I was given the explanation of possible TIA, transient ischemic attack, or mini stroke. Big help that was, no explanation behind WHY I would be a 24 yr old having STROKES! I also saw a neurologist who sent me to a cardiologist who referred me to another cardio doc and after the battery of tests-CAT,MRI, MRA (contrast), TEE (trach echo) and several EKG machines later, they determined it wasnt my heart.  Wipppiiiee! Back to the drawing board with $11,000 of debt.
        At this point, I had to get a new eyeglass prescription because my eyesight changed after that one week, I went from just weak reading glasses to bifocals!!  For the next six months it was impossible to stand up without getting so dizzy my vision would go white and I had to grab hold of anything I could for a few minutes til it went away.  Also being outside on a hot day gardening for more than an hour got to me, the dizzy spells were exponentially worse. For the past year, no attacks. The only thing that stuck around is my hand shakes now on my left hand when I try to grab hold of something, such as a glass and random very strange feelings in my left arm. For the past year I have been able to finally forget about it, that is until yesterday the 9th. I am out of town on business which took me through the coast and got to spend my free weekend at the beach.  I spent numerous hours in the sun, surfing and laying out on Saturday. 
     But on Sunday, again on the beach, I had by far the worst case of the numbness, the disorientation (couldnt figure out where I was for the an extended amount of time and couldnt figure out what all the people around me were doing) and then the massive pain.  The numbness is the weirdest thing, it was my entire left arm, half of my right and the upper parts of my legs. It was the deepest lack of feeling, my left hand couldnt feel the texture of the water bottle or even grab and pick it up, it was too weak to do so.  45 minutes later after the numbness started to subside, by the time I got to my car to drive back the pain started.  I went straight to sleep and woke up today have had no adverse effects. 
     So LONG story short, (sorry!!),  is this just migraine related, more "TIA's" or could it possibly be MS??  I have done research and so far I can match alot back (age of females of first diagnosis, the lesions in my CAT scan, the many reoccuring symptoms over time, triggers such as heat/stress, oh and I was diagnosed with what they think is Intersitial Cystitis which is a condition of loss of bladder control which can also be a symptom of MS). I know its got to take a doctor to diagnose, but I want to know as much information as possible, especially since I am with a new job and dont have insurance yet. The fact I went for a year with nothing major and now out of the blue another massive case of symptoms. What should I do? Please, ANY advice, info, thoughts, are greatly appreciated!!

Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 9/11/2007 12:02 AM (GMT -6)   
Honey, it sure sounds like your having a terrible time and a frightening one at that! I will keep you in my prayers. What does your mother think of all this? Do you have a regular family doctor. ?
I don't have any answers for you'll find that many of us here are in "limboland" . where we've been told that we may have MS, probably have MS, etc....but don't have a firm diagnosis as yet. For some of us it has been a long and frustrating process. So know, that you are not alone. Visit us often.Vent! Ask questions, whatever...Healing Well is a wonderful support and most of us can't get through this type of journey without support and understanding.
My only suggestion to you is : keep a journal of day to day feelings and symptoms. Bring it with you during your next visit to whatever medical establishment you might go to (dr. Er. ?). Be persistant. No one knows your body like you do. Whatever is happening is NOT NORMAL! Someone needs to get to the bottome of it.

Love and prayers
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 9/11/2007 5:38 AM (GMT -6)   

Clearly you need to be back in front of a neurologist, as there is something awry.  Here are a few random thoughts, in no particular order:

Having strokes is a real possibility. Age has little to do with problems with the circulatory system which can cause strokes, or heart problems. NOTE though - -those are two different kinds of disorders. You can have heart problems without having strokes, and you can have strokes without having heart problems. And doctors can't always tell you WHY you're having or not having a condition...only that it's there, and needs treatment.

Migraines can cause all sorts of weird symptoms. People think migraines ONLY mean severe headaches -- which you've experienced -- but they can cause all sorts of other problems, problems with vision, for example. And can leave lesions on the brain which can be confused sometimes with lesions caused by other disease processes, including MS. A person can have a migraine, then not experience one again for a LONG time. So that is a possibility.

MS is a relapsing-remitting disease (at least in it's early stages), so it's possible that you could have gone a long period of time without symptoms, only to experience an exacerbation, or flare, again.  A lot of what you describe doesn't sound to me like MS...but I'm not a doctor, don't pretend to be one, but whether you have MS or not needs to be explored thoroughly, and ruled in or ruled out.

There are lots of diseases and disorders, some neurological, some metabolic, which can cause a lot of symptoms that look alike from the outside, and feel alike to the patient. Only a thorough exam, with lots of tests and waiting around for test results, will eventually come up with some answers. 

If you can get your medical records from the doctors you've seen, and take them to your current doctor (if that is a different person), that would be helpful, and might speed up the process.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 9/11/2007 8:04 AM (GMT -6)   
Hey Nikki

Wow...what an experience u've had. I'm so sorry and realize just how scared u must be. Mary and Uppitycats have given u some excellent advice as usual. As Uppity said, there are many, many things this could be. Some are blessed in that they learn answers early, but for many, myself included, those answers come after a long wait. U will likely have to follow a prescribed path of tests to get to the bottom of this, but don't give up. Keep pushing on until u know what this is that's giving u so much problem and pain. In the meantime, do treat u'r symptoms as needed. See the docs when something bothersome comes up and ask for help. Many times we get into a funk of sorts where we accept pain as if there is no help since there is no final answer, but that's just not the way it is. U CAN treat the symptoms before u have the final dx. That just means don't sit in pain without asking for help.

I'm so glad u've found us and are posting! Please continue to ask as many questions as u may have and we'll do all we can to help lead u thru this. We have a wonderful community of people (as u can already see from Mary and Uppitycats) and they are all willing to do what they can to support u. Also, we have live chats on Monday's at 6:00pm (cst). We'd love to have u join us! Please do let us know how u'r doing and how the doc appts go. I'd love to hear what the doc says to that MRI that u clearly needed and had to wait for u'r chiropractor to order! Take care and welcome to the board friend!
Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

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