Discussions By Condition: I cannot get a diagnosis.

Could sure use some help!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: *Ange*
  • February 11, 2009
  • 04:56 PM

Hi all,
I came across your board this morning and am so glad I did!
I've been struggling for the past year now trying to get answers as to what is going on with me!
Here's some history......in 2005 both of my daughters went down with mysterious illnesses....it took 2 years to get them both diagnosed...in the end...my older daughter (who is now 12) was diagnosed with Paraxysmal Dystonia and a small nerve peripheral neuropathy. My youngest daughter (who is now 5) was diagnosed with Erythromelalgia. To say the least...those 2 years were the worst of my life...being told time after time that they had no idea what was wrong and watching my girls get worse every day! It was a very stressful time and ended up with us having to have fundraisers to get the girls back and forth from Arizona to Minnesota (which is the only place we could find that would even agree to seeing the girls). So, now I'll just to March 2008....my older daughter (who had not walked in years and we were told most likely never would again)...walked! It was remarkable and brought a new light to our eyes! However, later in that month my Grandmother passed suddenly and my father-in-law was admitted to the hospital and not expected to survive (due to heart failure). The next day is when everything began to go wrong with me!
I had a seizure that affected my breathing and was rushed to the hospital. I never did come out of the seizure like I should have...everything was still very dizzy and strange even months later! It was almost 2 months after the seizure that I finally was able to get out of bed when they discovered the anti-seizures meds they had me on might have been too much. They reduced those a bit and I started doing much better. But...then I started having horrible pain all over my body (but mostly it concentrated on my left side). They did test after test and all kept coming back normal! No neuropathy, clean MRI'S, EEG's, cat scans...nothing was showing any problems! As time went on my pain grew worse and worse and I grew very sensitive to the light (to the point I would look/act/sound drunk upon being introduced to bright light). My neurologist felt I might have Fibromyalgia and sent me to a rheumatologist....who in the end just told me I needed a psychiatrist! A hard blow but I one I learned to ignore! She said that my seizures and my light sensitivity could have NOTHING to do with Fibromyalgia and felt it was all in my head! So, from there we didn't really know where to go! I ended up starting with a new family dr (ours had closed her practice) and upon my first visit they were very concerned about me! This was January 2009. By this time I'd had numerous seizures, they had to raise up my anti-seizure meds and of course diagnosed me with Epilepsy! The new dr. though wanted to figure this out and see what was happening. By this point I had begun to shake uncontrollably at times, my head would bob and I just had lots of strange symptoms happening (I'll list them all at the end). He had new blood work done, another MRI and a spinal tap....nothing! No answers! However, after reviewing all the info and tests he felt he had an answer for us...Parkinson's Disease. As shocked as we were to hear that, after researching the symptoms a bit...we found it to be very accurate! I was beginning to get slower and slower in my movements, my speech, my thinking....there were many similarities. Of course my family dr. wanted me to see a specialist...but, in the meantime wanted me to be comfortable so he started me on Baclofen. It did help the edge off but I was still in a LOT of pain. So, he started me on Mirapex (apparantly a drug used to treat Parkinson's...he said, let's try it and see what happens). The first day on Mirapex I was out of bed...out of pain (not 100% but it felt so good to not have all that pain) and after a few days on it...I was my old self! It was amazing! Upon hearing the news my dr. said he was almost certain it was Parkinson's! I went to specialists yesterday and in the end, they said I needed a psychiatrist! LOL Nice huh? I really began to question myself....they said I was severely depressed from having 2 children that were sick! My girls are doing better now than they have for years so I don't understand that at all! I've tried to wrap my brain around this and figure out if it IS me....but, in my heart I know it's not! The pain I have now is the same pain I had as a teen (only it was only in my legs then...and lasted over 2 years)...I also had seizures as a teen (2) and as a baby (2). There have been time I've described my pain to my older daughter and her response has been "now you know what I feel like"...I had no idea that's what her pain felt like...she'd never described it the way I had! There are so many things that I can that prove whatever is happening to me isn't in my head and isn't brought on by boughts of depression! I'm a very positive person who loves life...even during hard times I still somehow keep my head up! On the days that I feel good...I'm out of bed...ready to take on the world (which is something my dr. and friends and family warn me against doing)...that doesn't fit the mold of someone very depressed. I guess having heard that twice now hurt! And...now I"m back to no answers again!
I'm hoping someone here might be able to go over my list of symptoms (and there are many because I keep a daily journal, at my drs request, logging every symptom that occurs). I don't have every single symptom every day, but....they are things I deal with on a regular basis. I do have a lengthy journal I'd be happy to send to anyone interested and you can see my symptoms dating back to the beginning of all this....even when I had no idea what it could be and you can see the progression of those symptoms as well! Another reason I am convinced there is really something wrong!
Right now the Mirapex is controlling my pain and shakes a LOT better. If I get really nervous or stressed out, they return but they don't come back with as much intensity as they used to! The one thing that concerns me right now is my speech though....I sound like I have a mouth full of marbles...or that my throat is horribly swollen (but it's not). I have a lot of jaw pain as well! This happened one other time (about 3 weeks ago) but only lasted about 2-3 days...this episode is now on day 3 so we'll see how things go.
I guess that's probably enough details for now! I'll include a list of my symptoms and medications in a second post (it won't all fit here).
Thanks so much for your time!, Ange

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.