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    Old 10-16-2008, 09:01 PM   #1
    pxycda's Avatar
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    Unhappy Frustrated Frantic and Frightened - Can you help?

    I am new to these boards and I hope I can find others that can give me some advice.

    A bit about me - up until recently I was in good health. I am a 44 white female, mild migraine sufferer (6-8 a year when hormones and barometer collide). I typically saw my md once every couple of years for a physical and only for the odd drop in if I needed to renew a prescription for sinus medication (nasonex) to keep me clear when I had a cold. I am not a medicator - I get high on an aspirin and I only take one advil for migraine if its really bad. (to give you a clue - typically meds expire in my cupboard). So the world of medicine and drs is new to me.

    So here's my story -
    I flew on business in mid July 08. After return flight on the friday, I noticed my left foot was swollen (ankle was 2x its size). By Monday it was not as swollen but it hurt to walk (ball of the foot was really sore and "burning" and top of foot near the smaller toes looked bruised). I went to my md and we both figured I over did high heels or the plane ride caused something. It went away after about a week with ice and elevation. (not sure if this is tied to my condition or not my md thinks so)

    Fast forward to first week of August, Driving to work my entire left side suddenly "switched off" and I felt numb (think dentist freezing) from top of my head to my toe on the left side. Went to ER thinking stroke, they ran tests, blood CT and ruled out stroke and advised I should follow up with md.
    MD was very concerned and did a full physical and work up. All normal.

    2nd Monday of August - I get up use the toilet and cant stand - neither leg wanted to move. finally got some feeling (the numbness again) and crawled back to bed. Went to see MD and he referred me to neuroligist with suspicions of MS.

    3rd week August - fire so bad on left side I went to ER and was admitted for 1week tested and released.

    Numbness has not entirely left me since the first episode - it is always there in varying degrees - at best numb left hand and foot, at worst - all nerves on fire (numb and tingling) from left shoulder down to finger tips, both buttocks, spine from neck to tailbone, and left buttock down to toes. Curiously very few issues on right side - sometimes a dull ache in the shoulder and recently a sharp needle like twinge in the second toe of my right foot. Other symptoms include MAJOR fatigue and sleep interruption, increased peripheral neuropathy with any activity (even a shower can trigger sypmtoms), general lack of energy, weakness on left side on really bad days, migraines are up to 1 - 2 a week and far more intense than usual.

    I have had the following tests:
    CT - two no dye (one was supposed to be with dye but technicians screwed up) both normal
    MRI of head and neck - both normal (although the brain showed "8-10 tiny foci of hyperintensity in the T2 and FLAIR sequences involving deep white matter in both frontal lobes"
    VEP - results pending
    EMG - test pending (scheduled for Nov 13 - gotta love CDN medicare)

    Today I went for Lumbar Puncture and Neurologist put me through torture! 6 attempts with the needle (and I felt everything) he hit bone and nerves several times. I was screaming - I could feel EVERYTHING!!!! Never felt that much pain in any procedure. I've had gall bladder disease and those attacks were a cakewalk compared to this. He never managed to hit the area for the fluid so we aborted and he said "your back just isnt suited to this". He's ordered another LP under the xray and I am hoping this one will go better - I know it needs to be done to get a diagnosis but needless to say I am hoping they get in there without me feeling anything next time. Should it hurt like that? Everything I read was "slight pressure". Not burning honking pain!

    So here I sit - wondering what the heck this is and how long it will be before I either have knowledge and a plan or begin to recover. I am at my wits end and starting to think I am losing my mind. This is all so surreal and I feel so useless and helpless. I havent been to work since Aug 25th. I hate feeling like this. It's all so upsetting. I try to keep a brave face for family and friends - especially DH. I don't want them to pity me and I see the fright in their eyes when they ask me how I am. I hate saying -"about the same with good and bad days". This is a new kind of hell. I try to rationalize myself out of pity parties by telling myself - you're not in a wheelchair, you're not incontinent, your vision and hearing is ok, you're not demented - it could be so much worse, but at times, especially like right now when I can find a comfortable position ( and my back is throbbing from that *&#!% LP attempt) and all seems so endless and unknown with no light at the end of the tunnel, it's so hard to keep a brave face.

    Thanks for letting me vent. If anyone out there knows what this could possibly be or is going through the same thing - it helps me to share.

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    Old 10-16-2008, 11:00 PM   #2
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    Re: Frustrated Frantic and Frightened - Can you help?

    Hi there....I just read your post...I am feeling so badly for you!What an ordeal you are going thru!Well at least the drs. are looking to find the answer...I know it is like torture waiting and wondering what is going on.

    The lumbar puncture should tell something...if they can get the CFS on the next try...what a frightening experience that must have been.For now just try to stay calm and take it one day at a time.So many of us here are going thru serious health issues and don't have all the answers to our health problems.

    They have probably checked your heart already,done blood work up besides the MRI of brain and c-spine,but did they do a full spine MRI?It could be something with your spine if your brain and c-spine was normal.I'm not familar with the report you posted about what was said about your brain MRI.Did they look for Chiari?Often it is missed on the brain MRI.

    Well I am so glad you came to join us on this board....I wish I could offer you some insight on what is causing your symptoms.....MS does come to mind,but also Chiari or a spinal could be one of so many things.

    Anyways I just wanted to post to you to let you know you're Not alone...there's many of us here that care!

    I'm sure Cindy and Bethsheba will be on the boards in the morning and they will most likely post to you.They are very helpful and wonderful people.

    Hope you have a better day~Scout

    Old 10-17-2008, 07:52 AM   #3
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    Re: Frustrated Frantic and Frightened - Can you help?

    Hi Pxycda~

    I am so very sorry to hear all your going through. Although we can't diagnose you, know that here, your not alone. We all suffer from illness, some of us know what we have but many here don't. But we all have been where you are with the not knowing and that alone is very frustrating

    I have chiari malformation and I suffer from the same similiar symptoms and more. Many diseases mimic each other, MS, Lyme, B12 deficiency, Chiari and so so many more. It sometimes takes quite a long time to figure it out.

    The one thing that you have to do is be strong and self advocate for yourself. Many test that you have done will come back normal and many times, things are overlooked by Dr's and then its up to you to find your answers as many of us have. Its a shame that the medical profession is not educated enough to diagnose these strange disorders. They just look for the big things.

    I see you met scout. She is a wonderful virtual friend and offers so much support and compassion here. I can relate to having a hard time burdening your family with all this. Its very hard to keep a happy face all the time though. So coming here, gives us a place to let it all out to others who truely understand.

    Sorry the Lp was a disaster. I had a similiar experience and the 1st one wasnt successfull. The 2nd one was and it changed my life for the worse so I am so compationate to those who have struggled with this. I found out I had curvature of the spine when I had mine done (scolioses) which I was never aware of. Even under the scope, they weren't successful. I think it all depends on who does the test. The next one I had, it was sitting in the ER on the side of a bed. The dr was extremely wonderful and did it with no problem. But I got a severe headache that hasn't left me since. I now know that an LP is taboo with chiari.

    So rest today if you can. You've been through alot. And whaever it is thats wrong with you, stress is definately going to make things worse

    We are here, anytime you need a place to come.

    Take it easy today


    Old 10-17-2008, 08:03 AM   #4
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    Re: Frustrated Frantic and Frightened - Can you help?

    Originally Posted by pxycda View Post
    I flew on business in mid July 08. After return flight on the friday, I noticed my left foot was swollen (ankle was 2x its size). By Monday it was not as swollen but it hurt to walk (ball of the foot was really sore and "burning" and top of foot near the smaller toes looked bruised).

    Welcome to the boards, pxycda!!

    Based on what you've said above, and based on your symptoms I would suspect a tick wouldn't be the first to have picked one up on the plane (I have heard of others doing so).

    I would suggest reviewing the Lyme's Disease boards thoroughly...especially if little shows up on the tests.

    Just for your info, tick infections can damage cartilage, bone, nerves, etc and sometimes that damage shows up on tests but the "damage" can't be explained. And there is no "one" test that can conclusively test for lyme's.


    Last edited by bethsheba; 10-17-2008 at 08:04 AM.

    Old 10-17-2008, 12:50 PM   #5
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    Re: Frustrated Frantic and Frightened - Can you help?

    The sudden numbness made me think of Guillain-Barré syndrome for some reason. Make sure they rule that one out, just in case.

    Old 10-17-2008, 10:15 PM   #6
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    Re: Frustrated Frantic and Frightened - Can you help?

    Wow, you have really been through alot. Reflex Sympathetic Dystrophy (RSD) can cause burning, numbness, etc. It can be a very painful condition, but medication can really help. I believe the most important thing is to get a doctor that is educated on the disease. Ice is very bad for RSD. I can't remember where you're from, but San Diego has an excellent RSD specialist that's done research on it for 35 years. It was only given a name about 20 years ago. Anyways, do a web search on it and you can get more info. Be careful though, there's alot of stuff on there that can cause panic and scare you to death. Much of it is extreme cases. I've had RSD over a year now and I'm on seizure meds that help keep my nervous system intact. I work part time, I'm not on any narcotics, haven't had any nerve blocks and I'm able to walk. UCLA diagnosed me. Ask you doctor about a 3-phase bone scan because that can help with diagnosis.
    Take good care, and all of us on this board are here to help you and to help answer any questions you might have.
    Have a good weekend, Deb

    Old 10-21-2008, 03:38 PM   #7
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    Re: Frustrated Frantic and Frightened - Can you help?

    Thank you all so much for your kind posts and words of support.

    I had a bad weekend with a good outcome.

    Friday I loss complete use of my left leg and ended up in the ER and admitted. ER doc on Sat morning decided that she was going to run every blood test known to man - they took about 20 vials of blood out of me and monitored me for the amount they took out. Well it seems I am diagnosed with a symptom but we are still searching for the underlying cause.

    Seems I am Phosphorus Deficient. This is so rare that they are all scratching their heads as to the cause. I can absorb but do not retain it in my body. They gave me a drink of it with my evening meal on Sunday and all symptoms disappeared within an hour!

    This condition is so rare that they are scratching their heads as to an underlying cause. Typically it is anerexics or alcoholics who are very malnourished that get this condition.

    Saw my MD today and he is sending me to a specialist to figure it out but in the meantime I am feeling normal again.

    I am hoping I am on the road to recovery as they figure out what caused this to happen.

    Thank you all again for your wonderful support. It was nice to have a place to funnel all that frustration and vent. Your support and responses were very helpful. Thank you again.

    Old 10-21-2008, 06:56 PM   #8
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    Re: Frustrated Frantic and Frightened - Can you help?

    It was so thoughtful of you to let us know what happened

    Thank goodness you are okay.What a fantastic dr....someone must have been watching out for you

    Hope you find out soon what caused it and that you stay healthy from now on

    Take care...I wish you all the best.


    Old 10-21-2008, 11:02 PM   #9
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    Re: Frustrated Frantic and Frightened - Can you help?

    I'm praying to God that my symptoms are caused by something as simple as a Phosphorous Deficiency.

    I know that my father has something strange about his potassium.. he "uses it up" very quickly. The doctors had never seen anything like it. This was actually the cause of arrthymia for him when he was in the hospital for recovery from a heart attack.

    Congratulations on making some inroads on your condition.

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