I got a diagnosis!! (actually 4...)

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wickedcrazy
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 3/16/2011 11:00 PM (GMT -7)   
Hi again, saw the pain doctor who has ready surpassed the neuro's knowledge and skill as far as I am concerned. Within my evualation I have 4 diagnosis: 1) cervical stenosis or narrowing at cervical spine 5 and 6-pushing on the posterior spinal cord-probably my whole problem to start with when this nightmare began july 2010. Plan of action - nerve conduction test on arms/legs due to tremors and weakness-assess damage-if damage, neurosurgical consult to do surgery to open those spaces, if no damage, cervical steroid injections to see what/if they help 2) probable spontaneoous spinal fluid leak from my left ear- as I questioned/cpmplained of from july 2010 as well-"no, that's ok"...so, now I get to have a myelogram to try to find leak, if a leak-referral to ear/nose/throat doctor and small surgery of fatty tissue to be sewed over the hole- a blood patch does not fix those (this is a 1 in 50,000 condition-yeah me!! Lol) if no leak, then it's just part of my migraine complexes 3) spinal fluid leak from the lumbar puncture that was done to assess for opening/closing pressures and possible leak to start with. Usually you get a blood patch 72 hrs after the procedure if symptoms and concern of dr. MY dr. "Nope, not a problem" lumbar puncture was 2 1/2 wks ago...been on bedrest since then due to increased headache when upright...blood patch tomorrow!!! (Only saw this dr today...) And 4) serotonin toxicity/storm/syndrome- complained of severe side effects when depakote given as a migraine prevebtative and I take a daily paxil...ignored again"it'll go away"-trusted him...continued to complain and got switched to topamax after 10 ER trips, a. Month on medical leave, multiple sick days in between and major decrease of my own functioning. Topamax and paxil combo for me was worse than depakote...told dr., went to new dr. Told new dr.-lit'll go away in time" -got an ambulance ride from a new/perfect job for me and my baby girl for having pass out and seizures at work-went to dr offcie the next morning no appt, just showed up. Asked how/when they were going to fix me-had of course taken my topamax-as prescribed and 45 minuts later full body tremors in his office waiting room for 2 hours, before they put me in a room (awaiting expedited testing I had to stay for) asked me why I was taking it if it did this, "you told me to" "well, yÓu obviously don't need to take it anymore" (****!!!) Sooo, now I am off topamax and paxcil and different antidepressant (can not go cold turkey off those) and awaiting "30 days after last dose before these may potentially stop" per the pain dr. I've already been off wotk for 3 wks witj no pay and at a new job and now looking at another month of the same- I will lose this job and my health insurance very soon.... And yes, I am a nurse- but I trusted my doctor's too much, not my own body and didn't complain loud enough until it was too late. Please, if you do nothing else-learn to pay attention to your body and complain/complain/complain-that's what they make the big bucks for and there's always another dr around the corner who may treat you even better as a patient. I am doing ok otherwise, my 6 1/2 daughter is back in my bed, forsake of being scared/worried about mommy....I have a few very close friend's who I owe my life too when it's all said and done. I am very happy to have an answer-even if it's 4 answers, sigh (god, I just wanted 1 or 2). But, I will persist- I am a rather stubborn person-i'll keep you all posted of my recovery-thanks for you patience in reading this!! (Also, please if yÓu are combining drugs pay close attention to side effects f them all-it was my paxil of 11 yrs that started this after the seizure med changed my chemistry - always feel free to ask your pharmacist and doctor) (if your doctor says, "don't worry, it'll be ok" start complaing more and if no response find a new doctor!!) Take care everyone and thanks again for your support!! Amy

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 3/17/2011 9:19 AM (GMT -7)   
Hi wickedcrazy,

HemiL here! I am happy that you are making progress. It sounds like you have a lot going on there. Possible CSF leakage, Full body tremors Wow! Yeah I’m kind of weary of that Topamax too. I’ve been on it for a while though. I think it may have prevented me from taking other medication to treat my migraines, because it did not mix well with other medications I tried. Plus I have some crazy side effects from Topamax so…

I always say that about doctors if a person does not feel they mesh well with their doctor or if their doctor is not receptive to their complaints. They should always find a new one, because how that doctor feels a person and their illness presentation (i.e faking the illness, psychosomatic, etc) is going to of course affect their treatment. I had similar problems with doctors I’m sure many on here have, but have been too trusting or intimidated to speak up.

On top of all of this I also read you had hemiplegic migraines too. I have hemiplegic migraines and I’m a nurse as well, unlike you though I haven’t been able to work in 3 going on 4 years. I am not sure when you started having hemiplegic migraines and all these other medical issues and I see you’re having some difficulty now, but I am sure you will pull through it. It seems like you have a great support system.


Be Well,

HemiL

wickedcrazy
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 3/17/2011 10:31 AM (GMT -7)   
Thanks Hemil, I have some great friends for support-my family support is not soo hot but it doesn't really matter at this point. I started with the hemi migraines in july as well, but the pain doctor is not so sure it's not being stemmed from the spinal cord impingement...sigh, I really don't want to be going thru that surgery just yet-but I'll do what I have to do. Sorry you've been unable to work/function better...on another note have you tried the herbal butterbur twice a day, 75mg? You can order it anywhere online herbal wise-it worked for three months for me with no side effects....worth a shot! I'll keep you guys posted on my status, I'm really hoping not to lose my home/job/car out of this due to income/sick . I'm praying a whole lot lately!! Take care! Amy

j4321r
New Member


Date Joined Feb 2011
Total Posts : 7
   Posted 3/17/2011 7:12 PM (GMT -7)   
Hi wickedcrazy

My girlfriend (a hemiplegic migraine sufferer) pointed your post out to me. I am concerned about you potentially losing health insurance coverage. I suggest finding a local legal services office that deals with health insurance and getting some advice. (This may take some trying as they are often quite busy). Every state has different programs and rules for health insurance. There is COBRA, but the rules for it have been changing and I do not know them.

http://lawhelp.org/ lists some sources of legal services, but is not always so up to date. I can give suggestions for NYC.

I hope your daughter is doing well.

jr

wickedcrazy
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 3/17/2011 7:34 PM (GMT -7)   
Thanks jr! I've been concerned as well, but have never had to worry about that before and not sure how to handle it. I will call the local legal assistance in the morning, first thing and schedule appt. Saw pain dr today and it does look like surgery for the cord compression- :(. But...if I get surgery soon, no permenant damage. Sooo, 3 more months off of work and guaranteed loss of job. I will also ask about applying for short term disanility-i've worked full time since I was 15... Thanks againn I do appreciate the concern/help-i'll keep post on the forum and can send personal ones you guy's way ((hugs)) amy jo
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