Hello everyone

Hi everyone. This is my first time posting here. I have not been DX yet. I started having strange symptoms about two months ago. I first noticed my left hand was losing sensation. The best way I can describe it is it felt like I was wearing mittens when I tried to touch things. I really wasn't that worried about it I am a computer technician so I figured I had just been typing for two long. Then, a few days later, something scary happened; the whole left side of my body went completely numb to the point where I could not move my arm of legs or even my facial muscles. Strokes run in my family so my husband rushed me to the ER. They ran a CT scan everything was normal but they kept me overnight. The next day they decided to give me an MRI....I was in the machine for 5 hours while they scanned my spine and brain. Luckily everything came back normal, but now I have unexplained symptoms.

 

Like a previous the person in a previous post I read I also have bipolar disorder and was told to see my psych doctor about getting medication for my "symptoms". I have also since then seen my primary doctor who I suspect also thinks I am making up the symptoms. Since this initial episode I have started seeing some really weird symptoms. They are very hard to describe in words but I will do my best. Most of the problems I have deal with my legs and back. There are times when I turn my head a certain way and I get a shocking or vibrating sensation. I wouldn't really call it painful but it runs down my back and into my legs. I haven't been able to figure out which direction I need to turn my head to bring the symptom on and it doesn't happen all the time but it is a little strange. I also have problems with my feet and legs falling asleep at odd times and sometimes for days. There are times when my legs feel heavy or tired like I have been running all day. Then there are other little things like there are times when I have trouble forming sentences or I cannot pronounce words correctly. I am having problems sleeping because my legs hurt or feel like there are things crawling up them. Sometimes it is hard to walk because my legs feel heavy and I feel clumsy. I have been tested for lyme's and it came back negative. My MRI was normal so I believe that rules out MS from what I have read, but I have not been able to find any other illness or disease that causes symptoms like the ones I am seeing. I'm sure there are symptoms I am leaving out I am quite tired lol so my memory is a little off at the moment. I see a neurologist for the first time tomorrow but I suspect they are going to attribute it to my bipolar disorder just like the others. I am here basically because I feel alone. I have a very supportive husband, but I am looking for people who have had symptoms like mine who can maybe give me tips on dealing with them on my own while I wait for the doctors to start believing me when I tell them something is wrong. I have read several posts here and it seems like you are a very caring group of people.

 

I'm sorry you're having so many difficulties!  It's good that you're seeing a neurologist.

Before your visit, try to sit down and list your various symptoms, leaving out any emotional stuff, anything that might sound like you're "whining", or "making things up".  Just a straightforward list:

The buzzing sensation -- "I get this buzzing / electric shock sensation when I turn my head, sometimes. It seems to move through my shoulder and down through my legs." and leave it at that.

"My hands are numb; it feels like I'm wearing mittens, or gloves."

"I just experienced this episode of numbness up and down the whole left side of my body." (and describe -- briefly -- your trip to the ER, the tests that were run.  And note how long this lasted.)

"My legs feel heavy, like I'm walking through mud." 

and so on. 

Then talk about the tests that were already run, and where the doctor needs to call to get them (if you don't have copies already, to give him).

As for the MRI -- lots of the folks here will tell you that early MRI's came back negative - -there were no signs of MS...but over time, lesions did develop and appear. So no, you can't say that because you had an MRI that was "negative" that you'd not have MS.

There are of course lots of things that can cause at least some of the symptions you describe, and it may take a long time -- measured sometimes in months and years -- for enough test results to come back "positive" for the doctor to make a diagnosis.  But in the meantime you need to try to separate bad past treatment from doctors and others (it's just your bi-polar; it's all in your head; other dismissive comments) and be as calm and rational as you can as you deal with the neuro, in hopes that he'll indeed take you seriously and get to the bottom of your problems.

By the way, you wouldn't be the first person I know with bi-polar (or other psychiatric issue) whose psychiatrist went to bat for them, and got the other doctors to understand that the symptoms they were experiencing were indeed no psychological in nature but very real, concrete, identifyable problems.  So if you get bounced back to your psych doctor again, you need to be clear with him, too.

Good luck with your neuro visit!

Hey Stephanie

Welcome to the board! Yes, Uppitycats gave u some very good advice and outlined things so well. I would only add some very good advise given me by Uppity and others here....keep a journal. Hang onto u'r notes and use them to start a journal of everyday occurances of symptoms. How they feel, how often they occur, what changes u detect in them and so on. Those notes will be vital to the doc as he/she tracks u'r progress. Whether they are able to dx u now or later, u'll need to have this info.

Best wishes on the appt today. I hope it's revealing. I can't remember if u said or not, but something else to consider is to ask for help with u'r symptoms. If they can't dx u right away, u'll still need help with dealing with the symptoms. The doc can give u med's to help manage the most bothersome symptoms and give u the relief u may need. Sorry if this is a repeat, but can't remember if this was brought up.

rhonda

Hey Stephanie

Yes, help with u'r symptoms can be a life saver. I tried several things, but ended up using cymbalta for the majority of my symptoms. It's an antidepressant, but seems to work well for the tingling/numbness/stinging, etc. It doesn't make them go away completely, but i'm not sure there's anything else that does. Others can advise u on other meds that worked well for them. Also, on the fatigue, the cymbalta works to help with that, but others here really like provigil. I also use requip for my arms and legs jerking. Again, it doesn't make it go completely away, but it helps. It just may be helpful for u to have some medicines that u'r familiar with when u go talk to the doc. Best wishes and i hope u'll at least get the relief u need so u can work.

rhonda

So the doctor says it's complicated migraines and has decided to rule out multiple sclerosis beacuse of the normal MRI I had. He has perscribed neurontin and says that should take care of the numbness and tingling so I guess we will see what happens.

Oh I am taking the migraine thing seriously. All I want is for the symptoms to go away and if they think it migraines, obviously they know more then me and I will stick with that until they decided on something else. I know that neurological problems are very hard diagnose and that it can sometimes take years to figure out what's going and I can be patient if we can just get the symptoms in check for right now so I live my life again. At least this one doctor did not say my symptoms were psychosamtic and tell me to speak to a psych dr. I did have a completely normal MRI except for some kind of mass they found in the muscles in my back which they say has nothing to do with the symptoms so that does make MS less likely. The only issue is that I have not noticed any headaches really. I have never really had problems with headaches so I am kind of confused by that.