Discussions By Condition: I cannot get a diagnosis.

Getting nowhere fast! Any advice? Parkinson's or MS?

Posted In: I cannot get a diagnosis. 23 Replies
  • Posted By: *Ange*
  • February 13, 2009
  • 09:14 PM

Hi all,
I tried to post this yesterday but I think it must be lost in cyber space somewhere...I don't see it anywhere!
I was hoping someone here might be able to shed a little light on what's been going on with me. I'm hoping to come across someone whose experienced what I'm going through (or knows someone who has). I've been trying to get a solid diagnosis for almost a year now!
It all started last March with a seizure (which for whatever reason seemed to affect the right side of my body more than the left).
I was hospitalized for a week due to non responsiveness after the seizure and a complication from anti-seizure meds they administered (Keppra...it made me sleep for almost 3 days straight).
After being released I had complications with heart palpatations and blood pressure but nothing was found.
I was sent home on Dilantin (which was also too high of a dose that went unnoticed for the first 2 months). Once the dose was lowered I was able to get out of bed. It was then that we realized I was severely sensitive to bright light (motion and sound also bothered me terribly). I would look and act as though I was drunk...unstable, dizzy, vision blurred, slurring speech. To date they can't figure out what this is from!
I then developed severe pain that mostly affected my left side (arm, hand, leg, foot) but does sometimes move into the right side. The pain was debilitating and would leave me in bed for days at a time. Then, it would be gone as quickly as it came! I also experience a tingling sensation on the left side of my brain (both with and without headache). I also experience tremors (both externally and internally) along with being unbalanced most of the time.
My family doctor recently discovered that he felt this was Parkinson's! I do have MANY of the symptoms and after being put on Mirapex improved, even the first day we saw vast improvement! Each day my symptoms seem to become less and less severe, but are still there.
I went to movement disorder specialist earlier this week who basically said I needed a psychiatrist...that the only problem I have is that I'm severely depressed. I can tell you right now, I am NOT! I do have trouble dealing with living with my issues but it doesn't consume my life! We can also track some of my symptoms all the way back to my teen years (of course they were very sporatic and less intense, but...they same symptoms none the less). My own research on my symptoms brings me back to either MS or Parkinson's every time! As much as I'd hate to have either of these, I really want to know what is going on, and what to expect. I seem to have about 80% of the MS symptoms I've found and most like 90% of the symptoms of Parkinson's (of course, early stage Parkinson's).
I have compiled a list of my symptoms if anyone would care to read them! I could post them! If anyone has any advice on where to go next (what field medically I mean) I'd greatly appreciate it! Also, if anyone else is on Mirapex for Parkinson's I'd love to ask you a few questions if possible!
Thanks so much!

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23 Replies:

  • Please provide me with a list of present symptoms. Also describe the seizure you experienced and whether it was a single episode or whether you've had them before. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • February 14, 2009
    • 01:18 AM
    • 0
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  • Sure! I'll enclose my list below! I keep a daily journal (at the request of my doctor)...if you'd be interested in any of the please let me know! I actually had 2 seizures as a baby (6 and 9 months of age) which they said were febral, I had 2 grand mal seizures as a teen (13 and 15) and then didn't have another until March 2008. When I was found I was very unresponsive and only the right side of my body was twitching, but...they didn't know how long I'd been seizing when they found me. From March to date I've had a number of seizures (I believe the count is at 6 or 7) with the majority of those being petite mal (starring off, being unresponsive type seizures). My dr. actually wonders if these were phogenic seizures now (I think that's what he called them). I've experienced a lot of my symptoms to some degree throughout my life...some episodes lasting months or years (mostly dealing with pain). After the seizure in March though they seemed to keep increasing steadily. Please do let me know if you have any advice!Thanks so much for your time! This is a list of my symptoms:Most of my symptoms affect my left side much more than my right side These symptoms do not always occur at the same time but are the most commom symptoms I've had over the past few months and do occur on a regular basis!Seizures...both petite mal and grand malSevere sensitivity to light, motion and loud sounds (causes slurred/stuttered speech, instability, coordination issues and vision problems (double vision, blurry vision, etc. and rapid eye movement)Tingling of my head (not scalp...deeper)..mostly occurs on the left sideSevere headaches (lasting a day or more with nausea)Pain throughout my body (extreme episodes lasting 2-3 days, or more)...pain is more of a gnawing/achy/crampy painFeeling of eyes twitching/moving uncontrollablyMetallic taste in my mouth (made worse as symptoms increase)Lower back pain/cramping Shoulder painTightness of chest and stomach (feels like something is wrapped around me) (stomach pain is not affected by diet and is mainly present upon waking...lets up within 20-30 minutes of walking/moving)Sore spots (outside of wrists, elboes, shoulders and top of feet)Lack of feeling in one finger and one toe (both on the right side)Reduced sensation on left side of body (no reaction of tickling/scraping of bottom left foot)Severe FatigueMuscle weakness (feels like I'm going to tear my muscles when using them for simple tasks)Knee pain and severe stiffnessNumbness in feet, legs, hand and armsOccasional heart palpatations (while doing nothing physical)Eyes feeling very tired and heavy, with quick onsetFeeling of vibration moving through meExtremely cold hands and feet while resting (while the rest of my body is warm)When startled/see fast moving objects I see lighted shapes when my eyes are closedInvoluntary jerking/tremor of muscles (especially jaw)Intention tremors (picking up small objects)Incontinence (coming out of no where)Taste and smell not right (both over sensitive and under sensitive)Sores that develop in the mouth (both on the tongue and inside cheeks/lips...feel as though it has a head on it...last about 1-2 days and happens very infrequently)Stumbling/balance issues (made much worse when subject to the light, movement and loud sounds)Feeling tongue tied (know what I want to say but can't seem to get my brain to work with my mouth to get it out)Difficulty grasping things (ex.---cups)Constipation and IBS like symptoms (vary)Excess saliva (drooling...both in my sleep and during ordinary activities)Memory issues (short term and some long term)Severe heart burn (acid reflux)Akathesia (internal tremor) (feeling as though I'm shaking from the inside out)Brain fog (just not being able to get my head above the clouds type feeling)Difficulty projecting voice, very soft voiceHoarseness of voiceDifficult writting....either due to tremor, pain/inability to grasp pencil or lack of concentration to do soDizziness (varies in severity)Dry mouth (feeling as though I can't get enough to drink to quench it)Hair loss (developing a small bald spot on upper right side)Hand/arm/leg/foot swellingHead tremor (bobbing as we call it)Heavy feeling of extremitiesHip pain and weaknessStartle easily (and have after effects as well...similar to those listed under light sensitivity)Numbness and Tingling of extremities (worse during sleep or periods of rest)Jaw and face pain/tightness/jerkingMood swingsKnee pain/stiffnessIncreased symptoms due to stress!!!!!!!Lack of coordination/balanceSlowness of thoughts/speechTaking smaller steps than usual (shuffling of feet)Slight limp (left side)Episodes of fear with no real cause (one episode to date)Stuttering/Cluttered or broken speech (usually lasts anywhere from 3-7 days and occurs about 1-2 times per month)Feeling as though my throat is swollen, when it's not. Accompanied by speech issues!Left side temple seems a tiny bit swollen from time to time (noticed after left side of face swelled due to MRI contrast solution)Frequent urination (intermittent)Insomnia (both waking too early and waking in the middle of the night)Inability to perform simple hand motions (unable to do them with accuracy or speed and tend to lean forward in my chair while trying)During episodes of speech issues.....singing is easier to perform than standard speech for some reasonSymptoms I was not aware of...brought to my attention by friends and familyDifficulty rolling over in bedDifficult rising from a chairUnstable balance most all the timeThings I've found that seem to help.....Mirapex has helped with ALL my symptoms...they are still there but at a much less noticable degree! (especially my pain)Shaking one of my hands when my head is bobbing seems to keep it from bobbing as much (some of the time)Sleeping it off (as I call it) helps with the problems I have following the light, sound and movement sensitivity. It's almost like it resets meMassage helps with the pain, sometimesHeat seems to help my pain more than coldWearing dark sunglasses and a hat when out in bright light does help reduce the after effects (along with avoid blinking lights or bright colors)A cold rag on the base of my neck or on my forehead does sometimes help with the headaches (caffiene seems to make it worse and brings on nausea)Resting my voice seems to temporarily help, but it doesn't last longMoving my face sometimes helps with the jaw jerkingMoving around sometimes help with the cramp like pain
    *Ange* 5 Replies
    • February 14, 2009
    • 01:47 AM
    • 0
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  • Have you ever considered that you might have a rather severe case of candida overgrowth, that has been getting worse over the years? If so, a candida cleanse can help a lot. If you're unfamiliar with candida overgrowth, do some research, it's the underlying cause of a lot of problems in a lot of bodies today.In any case, most people with a large number of health problems often have a great deal of toxicity stored in their bodies. Deep cleansing in general has helped me remove a lot of health problems that seemed unrelated from the outside. And the medical establishment, well, they had names for them, but told me there was nothing that could be done... Something to think about...
    Anonymous 42789 Replies
    • February 14, 2009
    • 06:44 AM
    • 0
    Flag this Response
  • Hi, For some reason when I try to post my symptoms it never goes through! So, I've added both a list of my symptoms AND my current medications in my blog! To answer your question about my seizures...I actually had 2 as an infant (6 and 9 months) which they classified at febral, 2 as a teen (13 and 15)...both grand mal and then didn't have another until March of last year. Since March though I've had a number of seizures (most being petite mal)...I went back in my journal to find I've had 7 since March 08. I keep a daily journal of all that happens with me (at the request of my family dr)...if you'd be interested in reading any of that please let me know...it's very long though! Thanks so much for your time! Ange ;)
    *Ange* 5 Replies
    • February 14, 2009
    • 03:31 PM
    • 0
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  • Hi Ange, when your logging in tick the wee "remember me box" this will give you time to reply without logging you out before you post your reply, if it doesn't show up straight away dont worry it will eventually get here. Best wishes :)
    Tootsie 628 Replies
    • February 14, 2009
    • 03:45 PM
    • 0
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  • Thank you! I'll give that try! I appreciate your help...I was beginning to get pretty frustrated with it! LOL Ange
    *Ange* 5 Replies
    • February 14, 2009
    • 03:48 PM
    • 0
    Flag this Response
  • Thank you! I'll give that try! I appreciate your help...I was beginning to get pretty frustrated with it! LOL AngeNo worries..........lol.....its a newbie thing, we've all done it......:D lol Good luck :)
    Tootsie 628 Replies
    • February 14, 2009
    • 04:00 PM
    • 0
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  • Oh, is that how you’re supposed to do it? I never learned… thanks, Tootsie. :pStill laughing about the jello, Ange. :D
    Felsen 510 Replies
    • February 14, 2009
    • 06:31 PM
    • 0
    Flag this Response
  • Oh, is that how you’re supposed to do it? I never learned… thanks, Tootsie. :pStill laughing about the jello, Ange. :D you also very welcome Felsen. laughing about the jello also.....loved it Ange :D
    Tootsie 628 Replies
    • February 14, 2009
    • 07:05 PM
    • 0
    Flag this Response
  • Thank you....my little sayings that keep me going! LOL I don't think raising kids could be put into words any better than that! LOL I'm glad my post helped someone else...at least with posting! LOL Glad I mentioned that now! I'm able to post MUCH easier now! Thanks again!, Ange :D
    *Ange* 5 Replies
    • February 15, 2009
    • 04:44 AM
    • 0
    Flag this Response
  • Thank you....my little sayings that keep me going! LOL I don't think raising kids could be put into words any better than that! LOL I'm glad my post helped someone else...at least with posting! LOL Glad I mentioned that now! I'm able to post MUCH easier now! Thanks again!, Ange :D Laughter is good for the soul & a smile goes a long way. Thought you'd like this Ange.....lol:D
    Tootsie 628 Replies
    • February 15, 2009
    • 10:59 AM
    • 0
    Flag this Response
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  • Tootsie....that was ADORABLE! Thank you so much for sending that to me! It's so very true too! A smile DOES go a long, long way! There are days that smiling is actually work for me...and I hate that! I'm the kind of person who always finds something to smile about...even during the worst of times! I guess it doesn't always matter if my face doesn't show it....so long as my heart does right? Thanks again Tootsie! Yaya...I will look into what you told me! Anything is possible! Thanks to you all for your support and advice! ;) Ange
    *Ange* 5 Replies
    • February 15, 2009
    • 02:07 PM
    • 0
    Flag this Response
  • Tootsie....that was ADORABLE! Thank you so much for sending that to me! It's so very true too! A smile DOES go a long, long way! There are days that smiling is actually work for me...and I hate that! I'm the kind of person who always finds something to smile about...even during the worst of times! I guess it doesn't always matter if my face doesn't show it....so long as my heart does right? Thanks again Tootsie! Yaya...I will look into what you told me! Anything is possible! Thanks to you all for your support and advice! ;) Ange We've all days like that Ange, as im sure you know it takes more effort to frown than it does to smile...........:) If you smile the world smiles with you, If you cry you cry alone. :D........lol
    Tootsie 628 Replies
    • February 15, 2009
    • 02:33 PM
    • 0
    Flag this Response
  • Have you tried getting your Vitamin D levels checked? Severe deficiency could cause what you are experiencing.
    Anonymous 42789 Replies
    • February 3, 2010
    • 06:53 PM
    • 0
    Flag this Response
  • Hi all,I tried to post this yesterday but I think it must be lost in cyber space somewhere...I don't see it anywhere!I was hoping someone here might be able to shed a little light on what's been going on with me. I'm hoping to come across someone whose experienced what I'm going through (or knows someone who has). I've been trying to get a solid diagnosis for almost a year now!It all started last March with a seizure (which for whatever reason seemed to affect the right side of my body more than the left). I was hospitalized for a week due to non responsiveness after the seizure and a complication from anti-seizure meds they administered (Keppra...it made me sleep for almost 3 days straight). After being released I had complications with heart palpatations and blood pressure but nothing was found. I was sent home on Dilantin (which was also too high of a dose that went unnoticed for the first 2 months). Once the dose was lowered I was able to get out of bed. It was then that we realized I was severely sensitive to bright light (motion and sound also bothered me terribly). I would look and act as though I was drunk...unstable, dizzy, vision blurred, slurring speech. To date they can't figure out what this is from! I then developed severe pain that mostly affected my left side (arm, hand, leg, foot) but does sometimes move into the right side. The pain was debilitating and would leave me in bed for days at a time. Then, it would be gone as quickly as it came! I also experience a tingling sensation on the left side of my brain (both with and without headache). I also experience tremors (both externally and internally) along with being unbalanced most of the time. My family doctor recently discovered that he felt this was Parkinson's! I do have MANY of the symptoms and after being put on Mirapex improved, even the first day we saw vast improvement! Each day my symptoms seem to become less and less severe, but are still there.I went to movement disorder specialist earlier this week who basically said I needed a psychiatrist...that the only problem I have is that I'm severely depressed. I can tell you right now, I am NOT! I do have trouble dealing with living with my issues but it doesn't consume my life! We can also track some of my symptoms all the way back to my teen years (of course they were very sporatic and less intense, but...they same symptoms none the less). My own research on my symptoms brings me back to either MS or Parkinson's every time! As much as I'd hate to have either of these, I really want to know what is going on, and what to expect. I seem to have about 80% of the MS symptoms I've found and most like 90% of the symptoms of Parkinson's (of course, early stage Parkinson's).I have compiled a list of my symptoms if anyone would care to read them! I could post them! If anyone has any advice on where to go next (what field medically I mean) I'd greatly appreciate it! Also, if anyone else is on Mirapex for Parkinson's I'd love to ask you a few questions if possible!Thanks so much! Just came across this - you may want to check it out. It's a neurological disorder M.E. - this website is very helpful. Hope you get it sorted out. http://www.hfme.org/themesymptomlist.htm
    Olliebear 1 Replies Flag this Response
  • WOW its like looking into my own life!!! You have A LOT of the same symptoms I do... I can't find my own post though lol I lost it on here... *sigh* but as of very recently the twitching started with the left eye now its the right eye and now my whole face (eye brows, mouth, forehead) thumbs (fleshy part) and as of even more recently I keep getting pins and needles in my head feels like a belt wrapped around my skull and as you worded it its deeper than the scalp... Let me know how it goes!! ~Nik~
    canadiandreamz 4 Replies Flag this Response
  • I don`t think is Parkinson`s or M.S I believe you suffer from Epilepsy
    Anonymous 42789 Replies Flag this Response
  • I have had similar problems and have had for ver 30 years and am now considering implantation of a DBS.because I have tried every medication. Unfortunately run out of options. Have you been to a.city hospital? I have.been through so many neurologists it's sickening.I then developed severe pain that mostly affected my left side (arm, hand, leg, foot) but does sometimes move into the right side. The pain was debilitating and would leave me in bed for days at a time. Then, it would be gone as quickly as it came! I also experience a tinglingI sensation on the left side of my brain (both with and without ). I also experience tremors (both externally and internally) along with being unbalanced most of the time. My family doctor recently discovered that he felt this was Parkinson's! I do have MANY of the symptoms and after being put on Mirapex improved, even the first day we saw vast improvement! Each day my symptoms seem to become less and less severe, but are still there.I went to movement disorder specialist earlier this week who basically said I needed a psychiatrist...that the only problem I have is that I'm severely depressed. I can tell you right now, I am NOT! I do have trouble dealing with living with my issues but it doesn't consume my life! We can also track some of my symptoms all the way back to my teen years (of course they were very sporatic and less intense, but...they same symptoms none the less). My own research on my symptoms brings me back to either MS or Parkinson's every time! As much as I'd hate to have either of these, I really want to know what is going on, and what to expect. I seem to have about 80% of the MS symptoms I've found and most like 90% of the symptoms of Parkinson's (of course, early stage Parkinson's).I have compiled a list of my symptoms if anyone would care to read them! I could post them! If anyone has any advice on where to go next (what field medically I mean) I'd greatly appreciate it! Also, if anyone else is on Mirapex for Parkinson's I'd love to ask you a few questions if possible!Thanks so much!
    Anonymous 42789 Replies Flag this Response
  • Possible ME . Seizure activity can happen with it. ME can be very similar in symptoms to MS and can also look like parkinsons at times. (I have ME and once got mistaken for having parkinsons by the nurses when I was in hospital due to my symptoms).
    taniaaust1 2267 Replies Flag this Response
  • Hi all,I tried to post this yesterday but I think it must be lost in cyber space somewhere...I don't see it anywhere!I was hoping someone here might be able to shed a little light on what's been going on with me. I'm hoping to come across someone whose experienced what I'm going through (or knows someone who has). I've been trying to get a solid diagnosis for almost a year now!It all started last March with a seizure (which for whatever reason seemed to affect the right side of my body more than the left). I was hospitalized for a week due to non responsiveness after the seizure and a complication from anti-seizure meds they administered (Keppra...it made me sleep for almost 3 days straight). After being released I had complications with heart palpatations and blood pressure but nothing was found. I was sent home on Dilantin (which was also too high of a dose that went unnoticed for the first 2 months). Once the dose was lowered I was able to get out of bed. It was then that we realized I was severely sensitive to bright light (motion and sound also bothered me terribly). I would look and act as though I was drunk...unstable, dizzy, vision blurred, slurring speech. To date they can't figure out what this is from! I then developed severe pain that mostly affected my left side (arm, hand, leg, foot) but does sometimes move into the right side. The pain was debilitating and would leave me in bed for days at a time. Then, it would be gone as quickly as it came! I also experience a tingling sensation on the left side of my brain (both with and without headache). I also experience tremors (both externally and internally) along with being unbalanced most of the time. My family doctor recently discovered that he felt this was Parkinson's! I do have MANY of the symptoms and after being put on Mirapex improved, even the first day we saw vast improvement! Each day my symptoms seem to become less and less severe, but are still there.I went to movement disorder specialist earlier this week who basically said I needed a psychiatrist...that the only problem I have is that I'm severely depressed. I can tell you right now, I am NOT! I do have trouble dealing with living with my issues but it doesn't consume my life! We can also track some of my symptoms all the way back to my teen years (of course they were very sporatic and less intense, but...they same symptoms none the less). My own research on my symptoms brings me back to either MS or Parkinson's every time! As much as I'd hate to have either of these, I really want to know what is going on, and what to expect. I seem to have about 80% of the MS symptoms I've found and most like 90% of the symptoms of Parkinson's (of course, early stage Parkinson's).I have compiled a list of my symptoms if anyone would care to read them! I could post them! If anyone has any advice on where to go next (what field medically I mean) I'd greatly appreciate it! Also, if anyone else is on Mirapex for Parkinson's I'd love to ask you a few questions if possible!Thanks so much!Hi Angie, I have recently started taking low dose naltrexone for autoimmune disorders (RA & MS). Go to www.ldn.org Don't waste anytime. Hurry!, God Be With You, Barbw1re
    Barbw1re 16 Replies Flag this Response
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