Unfortunately, without seeing you and reviewing your tests, I will not be of much help. It does not sound like, based on your description, all of your symptoms can be explained by seizures. If there are progressive changes on the MRI, I believe this should be worked up further. Blood tests such an vitamin B12, folate, thyroid, markers for diabetes, and inflammation (sed rate and C reactive protein) should be checked. After review of the MRI a spinal fluid analysis may be helpful. This would look for signs of infection or inflammation. I would encourage you to quetion your doctors about this and obtain a second opinion from an academic neurologist if needed. There are many other tests which may need to be done, but this depends on your clinical exmaination and testing. Good luck.
Except for the age .I'm 43, and I started most of my symptoms at the age of 37 , your story sounds like mine. I had total left side of my body go numb as well as face and Drs say no to TIA. I have been Diagnosed with Hashimotos, high antibodies, i do have positive ANAs but no Dx of Lupus.or MS. I suffer from double vision and phantom smells as well. When I smell something , usually a smoke smell, then I know a seizure is around the corner. I am on Keppra and now Topamax as well. They don't seem to be controlling my seizures very well, It is really frustrating for me.
I feel sure that when I die that during an autopsy the final diagnosis will smack the drs in the face! Of course right now there are days when I am so fatigued that I have to take a nap after a couple of hours of housework.We went to my niece's wedding a couple of weeks ago and when we got home I literally slept for about 4 days straight. At my age I should be able to do a little more even allowing for the tumor I had on my leg and my prosthesis and the pain I suffer.
I hope that you find better answers than I have so far, I go to Bethesda and should be getting pretty good care but the last dr I saw sat down and said"My GOd that's a huge scar!", he apologized but still showed a lack of respect for me.
Thank you for your reply, Bonnie,
I too have had bouts of double/blurry vision and have Hashimoto's - I had a comple thyroidectomy in 9/99 because I had an inward growing goiter that was choking me and I could not swallow well (inherited - gramma had same thing). I am on permanent thyroid replacement of course and see and endocrinologist also.... I am ok in that department.
Re; autopsy will tell... I've told my neurologist that I don't want to have to be an imbecile or on an autopsy table for them to find out what is wrong. I feel the sudden appearance of multiple brain lesions, abnormal EEGs, VERY high at times ANA (still it has always tested positive since they started testing for it 18 mos ago), and the symptoms point to something more than Fibromyalgia - though I'm very sure that is part of the all too often severe pain I suffer. I personally do not think that Fibromyalgia is a "wastebasket" diagnosis - it is very real! BUT I do think that too many docs throw out that diagnosis all too easily when the "lab tests" do not show absolute to them. I feel docs today FIRST look at Labs, then History, then the Symptoms the patient is telling them about....When they should First - LISTEN TO WHAT THE PATIENT IS TELLING THEM, then get the history - THEN THE LABS SHOULD BE LAST! I got aggravated and told my last doc I or the symptoms for which I went through hoops for a year to get to a specialist (him), who is supposed to be the chief of staff of rheumatology at the present company's "renowned" institution... that....I AM NOT A LAB TEST! Neither are the "VERY REAL" symptoms for which I jeopardized my job & my friends. (I had to have someone drive me the 2 1/2 hours to this institution cause I cannot mentally function long enuf to stay straight on the road and my eyes get so dry & blurry that I cannot see). I said these are NOT all in my head (ironically MRI & EEG may prove different but you know what I mean...=)... and that they have NOT gone away simply because they are concentrating on WORDS on a piece of paper!
I am frustrated - as you can tell =) - because I have not been able to work for 2 years and have had to apply for SSDI and now in addition to having to live with this ever-increasing illness, I have lost my home & my finances are ruined whilst docs too often flippantly say "Well, the lab reports don't show this or that" and then just dismiss you with "Oh, it's Fibromyalgia" and just take vitamins and excercise and take these muscle relaxers (which make me more confused and dizzy and bad feeling). THen when I have to call a few weeks later saying "I feel like I'm dying - my chest hurts, my flank is still in constant pain so I called to see what the follow-up is." And the doc goes "well ummmm, the Labs (AGAIN THE LABS NOT WHAT I'M TELLING HIM!) were not too bad" then repeats the results again (I really didn't need that as I already knew -- duh!) and then says "If you want to make an appointment to see me again... we'll talk about it and "MAYBE" see if we should refer you to ......"
Well, you know how long that would take! (months to see him & months to get referred to another specialist) whilst I just got done telling him I was in the ER 3x for severe flank pain and it's coming back..."IT HAS NOT GONE AWAY.. and what do I do fro the anemia for which you said "we need to address regardless" addressed?.." I said. Hmmm guess he forgot about that - the only person he saw was in the form of WORDS on a piece of paper... that's depressing. My friend (lives far away) told me she recently saw a specialist who asks all his new patients if he can take a snapshot of them - said he likes to put them in his patients files so he can look at them to help him to remember his patients as real people and not just his job. That's HUMBLE and I wish all docs would do that!
This is what I've been going through. My children are very concerned about me & want to know why I nearly died in the ER in June -- besides the slurring, eyes rolling back in head -- I also went into "acidosis" from hyperventilating because I could not take much of a breath because the pain was worse than anything I've ever felt - I had 4 kids - 2 at home with absolutely no pain killers of any kind... Then the stupid really mean nurse (my daughter remarked afterward that she was really way too mean...) whilst I am only semi-conscious -- literally says when I start crying - trying to tell them I'm scared though I was slurring so bad and my mouth felt very stiff, I oculd not feel my legs at all, and I could barely form any words -- she yells and says "yeah, it's because you went into acidosis -- I TOLD you to stop breathing so fast!" Then continues to treat me like I'm a bad child because I am in the ER unable to take a good breath and actually passed out from the pain....!!! I still have to write a letter to the hospital about her really uncalled for treatment to someone who was actually very helpless at the time.. If she was having that bad of a day - she should have went home - not took it out on me! Thankfully after being there, another nurse took my hand and said "I know honey... we're doing everything we can and you'll be alrigh." THose words kept me from totally breaking down.
This is long.. I know... I'm venting and maybe you won't even have read this far... tis ok =) Cie la vie! Such is life!
If you have... read this far.. I sincerely hope that the new doc to whom you are going to in the future... is willing to go the distance and care enough (part of Hippocratic Oath isn't it???) to follow through regardless of what extra effort it takes & to see you as a person who came to him/her for a REASON... not just a "lab result"... TOo often it this fast-paced society in which we now live - docs are overburdened and by the time they have been in the medical profession for enough years to become a so-called "specialist", they are burnt out and have forgotten why they wanted to become docs in the first place... I think....
Take care... Linda
PS - Sorry- last message so intense
and I should have said "people don't risk their jobs, waste their time, wait for months to see a specialist for no reason".
Not me (caue I've been unable to work) but I would've been the same was I working and is for all folks.... =)
I hear you about everything. I have decided to sit back and wait, one reason is I am just so tired!. The drs don't seem to listen anyway. I have been told Fibro like but no pressure points and pre manifestation of MS but not MS Yet!
Yeah... I get so........ tired of this merry-go-round too sometimes.. (as you can tell by my last post!) I too am laying low for awhile...
Thanks again & Hang in there -- this is coming from someone who really empathizes...=)