Undiagnosed-need support/answers/venting - Losing my mind.... :)

Hi there,
  I have tried a few other forums with no real luck, aside from the odd pat on the back :).  I found this site with all it's nifty tools and such, and have been playing with those for awhile, but holding back on the forum bit as I hate to get dissappointed again.  Anyway, ugh, I guess here goes.....


I am having what my current neuro confirms are TIA's and small strokes.  I was told the MRI 's and CAT scans were normal though (which he explained were bause I took so long to get them).  I had a car crash in 2000 and started having them short after.  They stopped off pretty much in 2005 but came back with a vengeance this fall.  I am going downhill fast it feels like.  My cognition is slipping, since the strokes began I started a limp and thats worse.  Now I had an attack a few days ago and my other foot is weak and jerky and I had double vision that day and could barely stay awake.  I seems like something new every week now.  As soon as I start to feel better, something happens.  There's MORE if course but I wont write forever.

Anyway, I used to be a frikkin' genius (literally) and even though I am having the darndest time working, I decided I am going to try to do what I can to figure out what's going on while I still have two brain cells to rub together.  (My Dad has PPA and lost it in four years time so I know how fast you can go).  

So, I started working on typing up my symptoms and trying to remember everything I could.  I wrote down what I thought might help, what I thought might be MAYBE going on, what I wanted to the doctor to look into, etc.  (I have tried just walking into appt.s unarmed for years and ALWYAS forget everything i was going to say as I have MEMROY PROBLEMS).  While doing this, someone suggestd I gt my MRI's and review them. Since I am an image anaylst, among other things, I figured why not.    So, I did, and sure enough, I found some things I wanted to ask about.  So added that to the print out.  Anyway,  I was so proud of myself for finally being armed with the brain I usually leave behind when I went to doctoros office.    He was nice, kind of laughed at my "presentation", flipped through it beriefly (this is my GP not my neuro) didn't even look at the images I printed and told me I was making too much of the MRI images and not to owrry about it.  Then proceeded to try to treat me for anxiety.  It's funny too becuase I actually had that med on my presentation for muscle relaxation, vasodilation AND to rule out stress as a factor. But no, he just zoned in on the stress only.  Ugghhhhhhhhhhhhhhhh...................... He didn't read anything else I wrote.  I asked if oxygen therapy would help me - he didn't read that. I asked if he could prescribe a supportive sleep pillow as sleep causes some attacks - he didn't read that.  I asked if one of the hospitals neuroradilogists could review my films - he didn't read that either. I got blown off ever so sweetly. I almost cried.  BUT at least he did give me the referral to the neuro I wanted, so hopefully that will work out well.  It's a  3 hours drive so it better be worth it :).

I guess I wanted to know why doctors dismiss you like that?  Why do they HATE it when you write or type stuff down?  Espceciallly for patients with known memory issues?  I am not being a frikkin' hypochondriac, I am practically a frikkin' amnesiac!  :)  Just kidding, almost.  

I also wanted to know, I have an appointment with an esteemed neurolgical institutue next month.  They sent out a very standard questionairre.  I am also supposed to bring in my records.  I am wondering if I should bring my personal record or not.  I REALLY want to start things off on a good foot with these people.  I don't want to come off as a hypochondriac.  But at the same time I dont kno whats relevant and what's not,s o I wrote allot down, plus I am verbose :).  Hpw in the heck do I get them to understand that?  Or should I just write a very, very simple symtom list, keep it in my pocket, and write and requests (like can you review my films) and keep it at that.  Being intelligent (I know my spelling and grammar don't show it but sue me, I have lots of strokes), I like to think that a doctor would appreciate a patient with a  mind of her own, I don't think I have found tha to be true.  I wish I could find someone who would collaborate with me on helping me get better, but if wishes were horses....

Anyway, any advice on the neuro visit?  It is CRUCIAL!  This is the end of the line in quality of care around here.  I have nowehere else to go to get my crap figured out.  I have three kids I want to see grow and be able to actually be there for them so I need to get this figured out ASAP.  

Alright, have to get some sleep.  Thanks for reading this if nothing else.  

[ggreg]

Well, about the list, I think along with the records and/or questionaire you supply them, you should ALSO put your list, just attach it.  You've spent a lot of time thinking thru what goes on there, and could be it will have a clue that will help the neurologist out.  That way, you can refer him to that list if need be, and, if nothing else, you won't have to remember everything.  Your REGULAR doc just doesn't know enough about TIAs to have commented, whereas a neuro will.  

I am so proud of you for getting the referral to a neurological institute of some merit.  THAT doc will ask you how you're doing, and that's when you tell him your most recent and troublesome symptoms.  Child, you are literally all stroked out, you have every right to be concerned, and you SHOULD be seeing a neuro, most definitely, and you have been thru the mill, plus you have not been feeling well at all lately, which is a serious problem that needs looking into.  We don't want this thing to get out of hand, you know.

I was in a car wreck and talk about problems!  Unless a person has been in one, they cannot truly know what a shattering experience that can be.  It's like you're being punished for something you didn't do.  We don't expect all these illnesses in our perfectly normal lives, it's hard to deal with, and even harder to convince someone that you ARE sick.  I hope I'm not sounding like a comforter, I'd rather be an informer.  (Actually, I'd like to be an enforcer!!!)  Anyhoooo, you're on the right track.  I think your brain is most definitely undergoing some very powerful changes, all from that crazy wreck, and TIAs are nothing to fool around with.  You could do a general search online, unless you already have, on TIAs and how they can affect people, how long they go on, that sort of thing.

I hope someone who has had TIAs will respond to you, along with what I've said.  Also, you can do a search of this community, the search rectangle is to the right of the blue bar across the top of this question and answer section, and put in TIA and see what all everyone here has already had to say about it, that ought to help out a lot.

[cleobaby74]

HI, it's me again :)

First, ggreg, Thank you for your kind and supportive post.  It meant allot to me at the time you wrote it.  I'm sorry it took a bit to post back but tings have been hectic and I am a space cadet :).  

Second,  I met with my GP again for my foot weakness and he prescribed physcial therapy for that and other weakness issues I have.  I start that this week.  Problem is, I was telling him how well the Tramadol and Clonazepam were working to help my pain and muscle sorenesss and for some reason he translated that into "I think you're anxety is causing your muscle tension" so let's nix the Klonopin and here's some antidepressants.  Seriously?  The klonopin is a muscle relxer (among other things) and that's why it was helping, plus it cut down on my seizure activity so I cut down on my antiepileptic.  I was doing so good, I haven't felt that well in a long time, I just had some spikes I wanted to deal with but other than that....  Anyway, being the good little patient I am (I know I complain later :)) I said sure, i'll try it.  So, for a week plus now I have been off the benzo's and on antidepressants.  Each day is worse and worse.  I wake up now in horrid pain with all my muscles clenched.  I have a headache all day (a new one on top of the old ones I had pre-good treatment). What stinks is I AM feeling better emotionally but seems to be backfiring as well.   LIke I went the grocery store the other day and was in a hurry so I pushed myself to go at a normal pace, thinking I felt good.  Two hours later, I felt like I pulled every muscle in my body.  Plus, the burning spot in my head is back worse than ever.  It is just killing me.  The tramadol isn't touching anything unless I take more than I am prescribed and I hate to do that.  Anyway, aside from "feeling" a bit better, I FEEL like hell.  I am in worse pain than I can remember ina long time.  I don't know what to do.  I know you're supposed to give antidepressants two weeks before giving up on them BUT this is killing me.  I can barely walk half the day most days.   Anyway, I dont know what to do.  I guess i'll call the doctor if it doesn't et beteer in a cuople days.  Well, I gotta run....  Thanks again ggreg!

[Spaceystac]

Im sorry that you have also had to deal with the doctors that will not help you, I can totally relate to how you must feel. I dont understand why they dont like "presentation", maybe they are threatened by this, or dont want to work any harder than they already do? Either way, it's no fun for them so they get pissy. I am sorry you are in so much pain, it is strange that they dont have you on something stronger, have you tried doubling Tylenol with you tramadol when having break through pain? You can take like 1500 mg occasionally for severe pain if you dont have liver problems or drink alcohol. You will be surprised what it can do. I get severe menstrual cramps and cant tolerate ibuprofen. My cramps get so bad, if I dont get meds in me when they start I will get sick to my stomach.

In my opinion, in regard to the appointment with the neuro. I would bring your stuff, but prioritize the findings that have been diagnosed. They seem to respond better to other doctors opinions and findings. Then when they ask you to tell them more about your symptoms, bust out your stuff, I think they should respond better to that.  

I am curious however, what does you MRI have on it? If you dont mind me asking. What made your previous doctor think you were having small strokes? I have a friend who was injured  recently and her symptoms are stroke like, partial paralysis of her left side with painful pins and needles. She fell on her head and neck and they said there was swelling around her spine. MRI's were done of her head and she had a "cloud" appearance over her brain stem. She also has white spots like ms but they are not in the right areas to be causing all of her current condition. I think this "cloud" on her brain stem was a small bleed, she starts to improve then her symptoms come back even worse. Her doctor doesn't know what to do with her, she cant even walk unassisted and he doesn't know why.

I was also wondering about your radiology skills? What do you know about flow voids in CSF? Or what causes them? I have read a lot of articles  on the topic but nothing is very definitive. I also have other issues involving CSF I hav a tiny syrinx, or fluid in the center of my cervical spinal cord and a Tarlov cyst in my S-2. There is alot of strange dark things next to my cord in my t-spine and they are darker and very prominent in the STIR mr images. I have been doing alot of research on mri's and I understand quite a bit of it. Its just not enough, I am half tempted to go back to college to learn to  read MRI's!

If you even want someone to vent with, let me know I will have a open ear for you. Sometimes its hard to find good forums with high responses on here so hang in there. I know In the past few months, I wouldn't have known what to do with myself with out this forum, just being able to find people in similar situations  has made a big difference in my mental status!       Sorry so long, hope you have a good day! Stacey

[ggreg]

Dear Cleo,
Well, hello there!  Yup, call the doc, tell him you're dying, and you want to get back on your old type of medicines.  Also, doublecheck if there's any refills on the last bottles of the stuff you hade, you can go in and get those refilled and begin them again right away if he WON'T prescribe for you, and you can go to another doc and just hand them the bottles and ask for refills and present any new complaints you have.  I'd write more, but Stacey seems to want to try to help, so I'll let you go.
GG