Aa
First Neuro Visit 4/19 input about my list
Ok All, I've looked at your neuro prep page and here's what I've got so far and I'd like some input from all of you about where I should shorten it, add more description, etc.
Seizures: vary from "frozen in time" to "status epilepticus" first seizure 8/6/2007
Vision: Blurred, and eyes always feel heavy,current prescription glasses are no longer strong enough, have to use magnifier to read, text changing colors while reading on monitor from black to green, like it's an animation.
Speech: slur some words occasionally, difficulty forming certain words (know the definition, but not the word)
Motor: Hands occassional mild to extreme tremor, most noticeable when holding phone, pointing, typing, etc. Knees tremble upon standing occasionally, legs jerk and twitch while sitting w/ legs elevated, near constant movement of toes
Sensations: numbness/tingling in arch of both feet, around toes, along top near ankle, feeling like bugs are crawling on various places on body, itching, feelings of pinches, pain/pressure various places, feeling of extreme fatigue wash over me, (kind of like closing a curtain) have to lay down and almost instantly fall asleep, muscle spasms anywhere/everywhere, pounding pulse feeling in abdomen when standing, recently was awakened w/ feeling around waist of extreme pain, almost like I was being ripped in half Pain traveling down right leg from just above knee to mid-calf when standing, staggering gait at times, dizziness, feeling of pressure in left ear all the time right ear occasionally
Anomalies: began noticing that I'm lip-smacking, lip-chewing, cheek-biting, and other repetitious movements of face
Heart: Blood Pressure usually low, but has become erratic, from high to low, Heart Rate usually Bradycardic but have had episodes of tachycardic, also feet become purple if dependent too long.
Major weight loss over past few months from 128 to 93 and I'm eating the same as I always have (sometimes more than usual)
Meds: Dilantin 300mg daily, Motrin 600mg TID, prn, Darvocet-N 100 BID, prn, prednisone 5mg daily, Combivent Inhaler 2 puffs QID, prn.
Seizures: vary from "frozen in time" to "status epilepticus" first seizure 8/6/2007
Vision: Blurred, and eyes always feel heavy,current prescription glasses are no longer strong enough, have to use magnifier to read, text changing colors while reading on monitor from black to green, like it's an animation.
Speech: slur some words occasionally, difficulty forming certain words (know the definition, but not the word)
Motor: Hands occassional mild to extreme tremor, most noticeable when holding phone, pointing, typing, etc. Knees tremble upon standing occasionally, legs jerk and twitch while sitting w/ legs elevated, near constant movement of toes
Sensations: numbness/tingling in arch of both feet, around toes, along top near ankle, feeling like bugs are crawling on various places on body, itching, feelings of pinches, pain/pressure various places, feeling of extreme fatigue wash over me, (kind of like closing a curtain) have to lay down and almost instantly fall asleep, muscle spasms anywhere/everywhere, pounding pulse feeling in abdomen when standing, recently was awakened w/ feeling around waist of extreme pain, almost like I was being ripped in half Pain traveling down right leg from just above knee to mid-calf when standing, staggering gait at times, dizziness, feeling of pressure in left ear all the time right ear occasionally
Anomalies: began noticing that I'm lip-smacking, lip-chewing, cheek-biting, and other repetitious movements of face
Heart: Blood Pressure usually low, but has become erratic, from high to low, Heart Rate usually Bradycardic but have had episodes of tachycardic, also feet become purple if dependent too long.
Major weight loss over past few months from 128 to 93 and I'm eating the same as I always have (sometimes more than usual)
Meds: Dilantin 300mg daily, Motrin 600mg TID, prn, Darvocet-N 100 BID, prn, prednisone 5mg daily, Combivent Inhaler 2 puffs QID, prn.
Thanks Quix I really and I mean really appreciate your input. I'm getting nervous about this the closer the day comes. But I'm as ready as I can be, I think.
Suzie :)
Suzie :)
I like both lists. I would have both of them available if the doc wants to see them. They will certainly help you in the visit to refresh your memory.
Good luck.
Quix
Good luck.
Quix
Ok I've followed your suggestion regarding a timeline style is this better?
When it all started..
May 4, 2007 out w/ grandkids running around, stepped wrong and received a left tibial plateau fracture
July 2007 started noticing swelling in wrists and left ankle with stiffness and pain, given Motrin
August 5, 2007 While sitting on couch aiding nephew reading text on tv, began feeling extremely tired, remember leaning back & when I became aware 2 paramedics were there told I had a seizure, felt kind of disoriented.
From July on began noticing problems with grasping items and having difficulty holding them, coffee pot required use of both hands to lift, began dropping things, stumbling, dizziness, feeling of pressure in left ear.
Nov 2007 hands began to be less responsive, more stiffness, more trembling, became more unsteady when moving from sitting to standing position.
Feb 2008 went w/ friend to FL to see sister began to notice that I would drool out right side of mouth.
June 6,2008 still in FL went get up from couch and had seizure that lasted for about 1.5 hours, was told also collapsed lower lobe of left lung. Hospitalized for 5 days & placed on Dilantin.
July 2008 had another seizure, lasted about 20 minutes again hospitalized 3 days, Dilantin lvl 3, dosage adjusted.
August 2008 went to arise from chair fell face first hit cement floor, fx nose, cut lip, while in ER xray of head, neck Doc discovered something in my spine and put on a c-collar seen by neurologist, who promptly removed c-collar & was told I had hairline fx of T1 & T2, not much more. Dilantin lvl 28.
Sept 2008 sitting in chair mom came in and tried to talk to me and I couldn't move or speak, she called ambulance, I could see and understand but I couldn't respond, not sure how long it lasted. Dilantin lvl 9.
Dr. Radnothy in FL tested for almost everything, the only abnormal was elevated WBC and platelet count. Began noticing weight loss, from 128 to 119.
April 2009 returned to Michigan, pain and swelling in hands, wrists and ankles increasing. Friends began noticing the hand tremors, started having headaches, dizziness, problems with speech.
Sept 2009 another seizure, sent to Foote Hospital Dilantin lvl 9 again.
Oct. 2009 began feeling like I had an elephant sitting on my chest, pressure and pain became unbearable, ambulance service arrived B/P was 140/100 went to Eaton Rapids ER, Dr. DeWeese transferred me to Ingham for cardiology consult.
November 2009 Became patient of Visiting Doctors, new blood tests, ekg, PT evaluation, etc.
January 201O Doctor visit, weight now 106, tremors more noticable, Right leg tremor upon standing noticed. MRI ordered.
Feb 2010 MRI done, beginning to notice when reading text is changing color.
Seen by Visiting Nurse, B/P becoming erratic, H/R going from brady to tachy placed on orthostatic hypotension review. Dr. ordered Inderal 5 mg daily, instructed if HR 60 or below to not take, most time HR remained above 65 only twice I haven't taken it.
March 2010 Doctor visit, MRI results in requests referral to Neurologist, began noticing pain and discomfort in rib cage on lower right side, feeling like I'm being punched from inside out.
After Dr. visit following morning, arising from chair stumbled and almost fell went to ER Dilantin lvl 38 medication stopped until next lvl drawn, after lvl drawn began same dosage, back on med for 5 days when PT came and witnessed seizure, 2 hours after therapist left had another seizure required ambulance and transport to ER, Dilantin lvl only at 7. Got weighed weight now 93.
Overall since August 2007 feelings of fatigue, vertigo, weakness, confusion and I can't remember all of the terminology have either continued or increased either in intensity or duration.
When it all started..
May 4, 2007 out w/ grandkids running around, stepped wrong and received a left tibial plateau fracture
July 2007 started noticing swelling in wrists and left ankle with stiffness and pain, given Motrin
August 5, 2007 While sitting on couch aiding nephew reading text on tv, began feeling extremely tired, remember leaning back & when I became aware 2 paramedics were there told I had a seizure, felt kind of disoriented.
From July on began noticing problems with grasping items and having difficulty holding them, coffee pot required use of both hands to lift, began dropping things, stumbling, dizziness, feeling of pressure in left ear.
Nov 2007 hands began to be less responsive, more stiffness, more trembling, became more unsteady when moving from sitting to standing position.
Feb 2008 went w/ friend to FL to see sister began to notice that I would drool out right side of mouth.
June 6,2008 still in FL went get up from couch and had seizure that lasted for about 1.5 hours, was told also collapsed lower lobe of left lung. Hospitalized for 5 days & placed on Dilantin.
July 2008 had another seizure, lasted about 20 minutes again hospitalized 3 days, Dilantin lvl 3, dosage adjusted.
August 2008 went to arise from chair fell face first hit cement floor, fx nose, cut lip, while in ER xray of head, neck Doc discovered something in my spine and put on a c-collar seen by neurologist, who promptly removed c-collar & was told I had hairline fx of T1 & T2, not much more. Dilantin lvl 28.
Sept 2008 sitting in chair mom came in and tried to talk to me and I couldn't move or speak, she called ambulance, I could see and understand but I couldn't respond, not sure how long it lasted. Dilantin lvl 9.
Dr. Radnothy in FL tested for almost everything, the only abnormal was elevated WBC and platelet count. Began noticing weight loss, from 128 to 119.
April 2009 returned to Michigan, pain and swelling in hands, wrists and ankles increasing. Friends began noticing the hand tremors, started having headaches, dizziness, problems with speech.
Sept 2009 another seizure, sent to Foote Hospital Dilantin lvl 9 again.
Oct. 2009 began feeling like I had an elephant sitting on my chest, pressure and pain became unbearable, ambulance service arrived B/P was 140/100 went to Eaton Rapids ER, Dr. DeWeese transferred me to Ingham for cardiology consult.
November 2009 Became patient of Visiting Doctors, new blood tests, ekg, PT evaluation, etc.
January 201O Doctor visit, weight now 106, tremors more noticable, Right leg tremor upon standing noticed. MRI ordered.
Feb 2010 MRI done, beginning to notice when reading text is changing color.
Seen by Visiting Nurse, B/P becoming erratic, H/R going from brady to tachy placed on orthostatic hypotension review. Dr. ordered Inderal 5 mg daily, instructed if HR 60 or below to not take, most time HR remained above 65 only twice I haven't taken it.
March 2010 Doctor visit, MRI results in requests referral to Neurologist, began noticing pain and discomfort in rib cage on lower right side, feeling like I'm being punched from inside out.
After Dr. visit following morning, arising from chair stumbled and almost fell went to ER Dilantin lvl 38 medication stopped until next lvl drawn, after lvl drawn began same dosage, back on med for 5 days when PT came and witnessed seizure, 2 hours after therapist left had another seizure required ambulance and transport to ER, Dilantin lvl only at 7. Got weighed weight now 93.
Overall since August 2007 feelings of fatigue, vertigo, weakness, confusion and I can't remember all of the terminology have either continued or increased either in intensity or duration.
I agree that is an excellent list but you may want to include the dates you noticed certain new neuro symptoms, a time line. However that seems like a huge weight loss and I am surprised your regular MD is not more concerned since you state you have not trying to lose weight. I guess he does want to wait for neuro appt but hopefully you will get some answers soon. Good luck
Amers
Amers
He's done the thyroid tests they're all normal, and since I'm eating like I should he's worried about it, he's going to wait until after I've seen the neurologist and gets his impression of the MRI, before he schedules any more tests, that way he can figure out which way to go, although he did say something about scheduling a colonoscopy, b/c of my hx of a polyp that was removed back in the '90s that was highly suspicious of small cell carcinoma,
He's trying to find all of my old medical records which if proving to be a challenge, b/c the hospital closed several years ago and either the hospital in Jackson has them or the one in Marshall does, trying to locate all of them and it's been like looking for a needle in a haystack.
He said something is absorbing my nutrients but what he's not sure yet. But like I posted in my earlier post about what he told me to hang in there we'll figure this out together.
He's trying to find all of my old medical records which if proving to be a challenge, b/c the hospital closed several years ago and either the hospital in Jackson has them or the one in Marshall does, trying to locate all of them and it's been like looking for a needle in a haystack.
He said something is absorbing my nutrients but what he's not sure yet. But like I posted in my earlier post about what he told me to hang in there we'll figure this out together.
Looks like a good list - I wouldn't do anything to it.
Hey, your weight loss sounds like you might have a problem with the thyroid - have you talked to your regular doctor?
Hey, your weight loss sounds like you might have a problem with the thyroid - have you talked to your regular doctor?
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