Blessed4Life
01-08-2008, 08:39 PM
Hey Everybody,
I am counting down until my next neuro appt. I have been journaling my symptoms since about mid-december. I finally decided to do it and it isn't as tough as I thought. I use my Outlook calendar at work (I can access it from home on the weekends) to document what I am experiencing. I have noticed that since I started journaling, I have not had one day where I didn't experience something and I am also experiencing more aggressive symptoms. I have always had the muscle jerkings and finger twitches, but I have noticed that the muscles are now not only jerking but tightening like a charlie horse especially in the back of my legs (both). I have had them in the calf area, back of knees, and front/back of thighs. I am also have more and "sharper" electric shock pain in my fingers, joints, and even in my head, especially around my ear. I have also had my eyes twitching (top and bottom lids, tear duct area, and what feels like my eyeball is jerking). For the past three days my left eye lid has twitched (feeling like is going to curl up) for the past three days.
What is going on with me? I am praying that I can finally get another MRI and that I can get some answers. Do these symptoms sound familiar to anyone else? I forgot, I am also vibrating and have general leg weakness. For about four days last weak I was so fatigued I felt like I was dragging a dead man on my back. Oh yeah, I am still forgetting words and using the wrong words all together.
I am counting down until my next neuro appt. I have been journaling my symptoms since about mid-december. I finally decided to do it and it isn't as tough as I thought. I use my Outlook calendar at work (I can access it from home on the weekends) to document what I am experiencing. I have noticed that since I started journaling, I have not had one day where I didn't experience something and I am also experiencing more aggressive symptoms. I have always had the muscle jerkings and finger twitches, but I have noticed that the muscles are now not only jerking but tightening like a charlie horse especially in the back of my legs (both). I have had them in the calf area, back of knees, and front/back of thighs. I am also have more and "sharper" electric shock pain in my fingers, joints, and even in my head, especially around my ear. I have also had my eyes twitching (top and bottom lids, tear duct area, and what feels like my eyeball is jerking). For the past three days my left eye lid has twitched (feeling like is going to curl up) for the past three days.
What is going on with me? I am praying that I can finally get another MRI and that I can get some answers. Do these symptoms sound familiar to anyone else? I forgot, I am also vibrating and have general leg weakness. For about four days last weak I was so fatigued I felt like I was dragging a dead man on my back. Oh yeah, I am still forgetting words and using the wrong words all together.
Sponsor
duttin
01-08-2008, 09:00 PM
Blesssed,
Your Symptoms Sound All To Familiar,the Leg Tightness With Cramps Could Be Associated With Spacticity.
The Eyes , I'd Push For A Opthamologist Appointment As The Eyes Should Never Be Left Untreated,the Jerky Eye Movements Could Be A Form Of Nystagmus.
When Is Your Neuro Appointment?they Need To Do A Full Panel Of Mri's Brain C-spine And Thoracic.
Have They Done Any Evoked Potentials?
I'm Gonna Ask Ya A Stupid Question,what Does Your Hands Feel Like When Ya Put Them In Hot Water?
You Really Need Answers Soon
T
Your Symptoms Sound All To Familiar,the Leg Tightness With Cramps Could Be Associated With Spacticity.
The Eyes , I'd Push For A Opthamologist Appointment As The Eyes Should Never Be Left Untreated,the Jerky Eye Movements Could Be A Form Of Nystagmus.
When Is Your Neuro Appointment?they Need To Do A Full Panel Of Mri's Brain C-spine And Thoracic.
Have They Done Any Evoked Potentials?
I'm Gonna Ask Ya A Stupid Question,what Does Your Hands Feel Like When Ya Put Them In Hot Water?
You Really Need Answers Soon
T
Blessed4Life
01-11-2008, 06:21 PM
Duttin,
My neuro appt is on Monday. I am praying that something comes of it. My symptoms are actually scaring me (for the first time). I actually feel like my body is under attack. Aside from the brain MRI I had about two years ago (that the new neuro couldn't find results for and the old neuro never actually showed me -- just said it was "ok" but she never actually had them in front o of her). My plan is to insist on all of the tests you mentioned.
I am have what I can only describe as a relapse. My symptoms are jumping around my body from arms, legs, torso, buttocks, face, hands, and feet. I am having muscle spasms, spastisity, numbness, electrci shock pains, muscle pains, and joint pains. I don't know what I will do if the neuro appt doesn't go well.
I feel so alone. My husband doesn't understand. My sister has been counseling me about "claiming" a condition. I tried to explain to her that when your body is doing the things my body is doing, you can't just ignore it. I have faith in God and I trust Him with my life. If I do have MS or whatever is causing all of this, I wouldn't look at it as a curse. This is just something for me to be a witness about. I just hate being in the dark about what this is and suffering alone.
Michelle
My neuro appt is on Monday. I am praying that something comes of it. My symptoms are actually scaring me (for the first time). I actually feel like my body is under attack. Aside from the brain MRI I had about two years ago (that the new neuro couldn't find results for and the old neuro never actually showed me -- just said it was "ok" but she never actually had them in front o of her). My plan is to insist on all of the tests you mentioned.
I am have what I can only describe as a relapse. My symptoms are jumping around my body from arms, legs, torso, buttocks, face, hands, and feet. I am having muscle spasms, spastisity, numbness, electrci shock pains, muscle pains, and joint pains. I don't know what I will do if the neuro appt doesn't go well.
I feel so alone. My husband doesn't understand. My sister has been counseling me about "claiming" a condition. I tried to explain to her that when your body is doing the things my body is doing, you can't just ignore it. I have faith in God and I trust Him with my life. If I do have MS or whatever is causing all of this, I wouldn't look at it as a curse. This is just something for me to be a witness about. I just hate being in the dark about what this is and suffering alone.
Michelle
cyprian1
01-11-2008, 09:06 PM
Duttin,
My neuro appt is on Monday. I am praying that something comes of it. My symptoms are actually scaring me (for the first time). I actually feel like my body is under attack. Aside from the brain MRI I had about two years ago (that the new neuro couldn't find results for and the old neuro never actually showed me -- just said it was "ok" but she never actually had them in front o of her). My plan is to insist on all of the tests you mentioned.
I am have what I can only describe as a relapse. My symptoms are jumping around my body from arms, legs, torso, buttocks, face, hands, and feet. I am having muscle spasms, spastisity, numbness, electrci shock pains, muscle pains, and joint pains. I don't know what I will do if the neuro appt doesn't go well.
I feel so alone. My husband doesn't understand. My sister has been counseling me about "claiming" a condition. I tried to explain to her that when your body is doing the things my body is doing, you can't just ignore it. I have faith in God and I trust Him with my life. If I do have MS or whatever is causing all of this, I wouldn't look at it as a curse. This is just something for me to be a witness about. I just hate being in the dark about what this is and suffering alone.
Michelle
i totally understand ,i had a husband that had little or no sympathy, and only my mom and baby bro knew what i meant by "i am tired", "i can't today" etc ... some folks actually were saying what your sister said , only i was called a phoney .. how can i still be walking,, they did not know i used a chair for a little over a month .. i couldn't recognize faces and definately couldn't remember and was in pain 24-7 and on drugs .. neither did i bother to explain it any further ..
some people who were friends , helped me out by making sure i had shade, water, seat, and or a ride if needed .. some have passed on and i will miss them dearly .. but my dearest people in my life so understand .. it is nice when i don't have to keep explaining myself , too ...
i am also feeling the residue of a relapse still, from july 05 .. quite a bit has stuck with me , my gait, the finger curl (continually now in right hand) , my hips , especially the right is like a burning sensation i have never experienced , so that is new and only within last few months .. so i too am bouncing around with symptoms and have to wait til i see the neuro ..
so blessed4life , i am with you , as a kindred spirit, so you are not suffering alone , trust me , i am with you .. adrian
My neuro appt is on Monday. I am praying that something comes of it. My symptoms are actually scaring me (for the first time). I actually feel like my body is under attack. Aside from the brain MRI I had about two years ago (that the new neuro couldn't find results for and the old neuro never actually showed me -- just said it was "ok" but she never actually had them in front o of her). My plan is to insist on all of the tests you mentioned.
I am have what I can only describe as a relapse. My symptoms are jumping around my body from arms, legs, torso, buttocks, face, hands, and feet. I am having muscle spasms, spastisity, numbness, electrci shock pains, muscle pains, and joint pains. I don't know what I will do if the neuro appt doesn't go well.
I feel so alone. My husband doesn't understand. My sister has been counseling me about "claiming" a condition. I tried to explain to her that when your body is doing the things my body is doing, you can't just ignore it. I have faith in God and I trust Him with my life. If I do have MS or whatever is causing all of this, I wouldn't look at it as a curse. This is just something for me to be a witness about. I just hate being in the dark about what this is and suffering alone.
Michelle
i totally understand ,i had a husband that had little or no sympathy, and only my mom and baby bro knew what i meant by "i am tired", "i can't today" etc ... some folks actually were saying what your sister said , only i was called a phoney .. how can i still be walking,, they did not know i used a chair for a little over a month .. i couldn't recognize faces and definately couldn't remember and was in pain 24-7 and on drugs .. neither did i bother to explain it any further ..
some people who were friends , helped me out by making sure i had shade, water, seat, and or a ride if needed .. some have passed on and i will miss them dearly .. but my dearest people in my life so understand .. it is nice when i don't have to keep explaining myself , too ...
i am also feeling the residue of a relapse still, from july 05 .. quite a bit has stuck with me , my gait, the finger curl (continually now in right hand) , my hips , especially the right is like a burning sensation i have never experienced , so that is new and only within last few months .. so i too am bouncing around with symptoms and have to wait til i see the neuro ..
so blessed4life , i am with you , as a kindred spirit, so you are not suffering alone , trust me , i am with you .. adrian
Bearygood
01-11-2008, 09:24 PM
Michelle, just wanted to wish you luck at your appointment! Please let us know what happens. :)
Blessed4Life
01-12-2008, 12:38 AM
I will definitely post what happens at my neuro appt. I am dreading it on one hand and anxiously awaiting it on the other. My biggest fear is that despite the fact that I have been sitting here for about five minutes feeling like I am being stabbed in my right thigh, when I get to the appt I will not have any active symptoms. It seems that is a big deal. I typically have little or nothing going on during the appt and its like all validity to my symptoms goes right out the window. I see it on the face of the doctor and then I start to question myself...maybe this is all in my head. I just am so desperate to get some answers. I have to go in there with my corporate hat on. At work, I get answers. I don't take no for an answer. It seems I wilt like a flower as soon as I see the white coat. The doctor is IMPORTANT and I am NOBODY. I know this isn't true, but I can't seem to shake the feeling. Everything they say seems to sound RIGHT even if I know they are DEAD WRONG.
Please keep me in your prayers. I'll be in the "hot seat" at 4:30pm on Monday. I am determined not to leave there again in tears...no matter what.
Please keep me in your prayers. I'll be in the "hot seat" at 4:30pm on Monday. I am determined not to leave there again in tears...no matter what.
cyprian1
01-12-2008, 10:45 AM
I will definitely post what happens at my neuro appt. I am dreading it on one hand and anxiously awaiting it on the other. My biggest fear is that despite the fact that I have been sitting here for about five minutes feeling like I am being stabbed in my right thigh, when I get to the appt I will not have any active symptoms. It seems that is a big deal. I typically have little or nothing going on during the appt and its like all validity to my symptoms goes right out the window. I see it on the face of the doctor and then I start to question myself...maybe this is all in my head. I just am so desperate to get some answers. I have to go in there with my corporate hat on. At work, I get answers. I don't take no for an answer. It seems I wilt like a flower as soon as I see the white coat. The doctor is IMPORTANT and I am NOBODY. I know this isn't true, but I can't seem to shake the feeling. Everything they say seems to sound RIGHT even if I know they are DEAD WRONG.
Please keep me in your prayers. I'll be in the "hot seat" at 4:30pm on Monday. I am determined not to leave there again in tears...no matter what.
No. no YOU are the important one and he is , well, not nobody, but if you are not happy or comfortable with this guy, find another. I know it would seem like a dreaded thing to have to do. But I wouldn't take that making you feel like nothing , just because he has some letters after his name ... is it not good for you mentally to think of yourself as nothing .. written documentation from you about your problems or issues is something they should understand , it moves around ..
I was told by a fellow mser to bring a sm. tape recorder , and let the doc know i will be using this at each visit .. so i can remember what and how they say things .. so far my docs have been polite, after narrowing down my search for a compassionate neuro ..
I just don't like seeing you feeling as if you are nothing , you are SOMEBODY , and a very special somebody , to boot !
Please keep me in your prayers. I'll be in the "hot seat" at 4:30pm on Monday. I am determined not to leave there again in tears...no matter what.
No. no YOU are the important one and he is , well, not nobody, but if you are not happy or comfortable with this guy, find another. I know it would seem like a dreaded thing to have to do. But I wouldn't take that making you feel like nothing , just because he has some letters after his name ... is it not good for you mentally to think of yourself as nothing .. written documentation from you about your problems or issues is something they should understand , it moves around ..
I was told by a fellow mser to bring a sm. tape recorder , and let the doc know i will be using this at each visit .. so i can remember what and how they say things .. so far my docs have been polite, after narrowing down my search for a compassionate neuro ..
I just don't like seeing you feeling as if you are nothing , you are SOMEBODY , and a very special somebody , to boot !
taosdaphne
01-12-2008, 05:19 PM
Michelle,,yes you ARE somebody, and I completelly understand about the twitching/spssticity. Put it down to a badly mangled lumbar spine and took neurontin for years--works great but getting of it is hell.Finally had major back surgery about 4 years ago. and the spasms on my weaker side (right) almost disappeared, and did disappear completely on left. Before Neurontin I would clench/charley horse and then kick out like an angry horse every 15 SECONDS for up to eight hours. Clearly spinal nerves were invplvbed to some extent, but I think just exacerbated the MS spasticity. I only get it at night now, and take 5-10 mg of valium, which calms them down. There are other drugs too--talk to the neuro about them. And find another neuro if you don't like this one. I have 2--one in Albuquerque who did the initial dignosis and on whom I rely for refills, and one at Mayo in Scottsdale, who is an MS specialist and GREAT.
Good luck. This is a frustrating diseqse, but I just take it day by day. Recently went back to the piano (I used to be Rachmaninoff good) partly because Ihave missed playing, but partly to keep my hands agile.
Good luck. This is a frustrating diseqse, but I just take it day by day. Recently went back to the piano (I used to be Rachmaninoff good) partly because Ihave missed playing, but partly to keep my hands agile.
jlbrow7
01-12-2008, 05:38 PM
WoW! The piano - good for you! I love hearing about people who get back their old lives, even partially.
Michelle, your neuro sounds like an a**. That's the last thing you need to deal with. Look around for an MS neuro if you don't have one. Neuros who don't specialize in MS just don't have the knowledge base to help as much.
Good luck!!! :)
Michelle, your neuro sounds like an a**. That's the last thing you need to deal with. Look around for an MS neuro if you don't have one. Neuros who don't specialize in MS just don't have the knowledge base to help as much.
Good luck!!! :)
duttin
01-12-2008, 06:20 PM
Michelle,
You Are Someone,these Drs Work For Us.
I Know That You Have Had Difficulties In The Past With Drs,ya Gotta Lay Everything Out On The Table And Tell This Neuro That You Don't Want To Be Dismissed,that You Need Him To Find The Etology To Why You Feel The Way You Do.
I Am Blessed For The Neuro I Have,even Though We Have Our Battles,but He Continues To Update Test As To See If My Ms Has Progressed Or Not.
Blessed If I Want More In Depth Reading Mri's I Ask Them To Be Sent Out To A Neuro Radiologist.
Ask Lots Of Questions,don't Get Nervous,you Deserve A Proper Work Up ,testing And Treated As A Patient.
T
You Are Someone,these Drs Work For Us.
I Know That You Have Had Difficulties In The Past With Drs,ya Gotta Lay Everything Out On The Table And Tell This Neuro That You Don't Want To Be Dismissed,that You Need Him To Find The Etology To Why You Feel The Way You Do.
I Am Blessed For The Neuro I Have,even Though We Have Our Battles,but He Continues To Update Test As To See If My Ms Has Progressed Or Not.
Blessed If I Want More In Depth Reading Mri's I Ask Them To Be Sent Out To A Neuro Radiologist.
Ask Lots Of Questions,don't Get Nervous,you Deserve A Proper Work Up ,testing And Treated As A Patient.
T
Blessed4Life
01-12-2008, 08:46 PM
The neuro I am seeing is "new". I've only seen her once. She is the colleague of my previous neuro. I did explain that I wanted answers. But I am not so sure either of them can really give them to me. I asked my primary dr to refer me to an MS specialist but he refused. He said that I don't know that I have MS so I shouldn't limit myself to a neuro with one specialty. I feel like it's all just a crock. Just like when my neuro refused to give me another brain MRI, despite the fact that she couldn't find the results of the first one. She said, "why create an unnecessary bill?". I am so angry with myself for not saying, "I have Blue Cross and Blue Shield, let me worry about the bill!".
I have been very achy and tired lately. The weather has been up and down, sunny one minute and cold and rainy the next. I feel like my entire body is one great big ache. If frustration doesn't make me speak up, this pain sure better. I need some help!
Michelle
I have been very achy and tired lately. The weather has been up and down, sunny one minute and cold and rainy the next. I feel like my entire body is one great big ache. If frustration doesn't make me speak up, this pain sure better. I need some help!
Michelle
duttin
01-13-2008, 10:45 PM
Michelle,
Goodluck Tomorrow,be Strong!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Goodluck Tomorrow,be Strong!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
tracijo
01-14-2008, 01:08 AM
Michelle,
I am so sorry that you were treated badly by your neuro. I had my first appt with the neuro on Friday and it was a train wreck. I was so stunned at her dismissive attitude that I was spechless. And that doesnt happen very often. In the last 6 weeks I have had 5 days without symptoms and the day of my appt was one of them. I had to wait a long time for the insurance approval and the appt. so I am having the tests (from what I have read on this site and others she ordered some of the right tests) but I am calling my gp tomorrow to request a different neuro. I have not dx yet but what ever it is, it's causing enough stress all by itself. The neuro should help relieve the stress not add to it.
It scared me to be dismissed so out of hand by someone who is supposed to be helping you. I have the guts and knowledge to know I need a doc I can work with but I know there are those out there that do not. I tell my kids all the time that you don't need to pay people to be rude to you, you can find people to be rude to you on the street. So do what I am doing and find a doc you can work with. We deserve better. Good luck and take care.
Traci
I am so sorry that you were treated badly by your neuro. I had my first appt with the neuro on Friday and it was a train wreck. I was so stunned at her dismissive attitude that I was spechless. And that doesnt happen very often. In the last 6 weeks I have had 5 days without symptoms and the day of my appt was one of them. I had to wait a long time for the insurance approval and the appt. so I am having the tests (from what I have read on this site and others she ordered some of the right tests) but I am calling my gp tomorrow to request a different neuro. I have not dx yet but what ever it is, it's causing enough stress all by itself. The neuro should help relieve the stress not add to it.
It scared me to be dismissed so out of hand by someone who is supposed to be helping you. I have the guts and knowledge to know I need a doc I can work with but I know there are those out there that do not. I tell my kids all the time that you don't need to pay people to be rude to you, you can find people to be rude to you on the street. So do what I am doing and find a doc you can work with. We deserve better. Good luck and take care.
Traci
cyprian1
01-14-2008, 09:53 AM
Michelle,
I am so sorry that you were treated badly by your neuro. I had my first appt with the neuro on Friday and it was a train wreck. I was so stunned at her dismissive attitude that I was spechless. And that doesnt happen very often. In the last 6 weeks I have had 5 days without symptoms and the day of my appt was one of them. I had to wait a long time for the insurance approval and the appt. so I am having the tests (from what I have read on this site and others she ordered some of the right tests) but I am calling my gp tomorrow to request a different neuro. I have not dx yet but what ever it is, it's causing enough stress all by itself. The neuro should help relieve the stress not add to it.
It scared me to be dismissed so out of hand by someone who is supposed to be helping you. I have the guts and knowledge to know I need a doc I can work with but I know there are those out there that do not. I tell my kids all the time that you don't need to pay people to be rude to you, you can find people to be rude to you on the street. So do what I am doing and find a doc you can work with. We deserve better. Good luck and take care.
Traci
ditto ... welcome to you ... michelle , everything will work out .. and we all deserve better ... :angel:
I am so sorry that you were treated badly by your neuro. I had my first appt with the neuro on Friday and it was a train wreck. I was so stunned at her dismissive attitude that I was spechless. And that doesnt happen very often. In the last 6 weeks I have had 5 days without symptoms and the day of my appt was one of them. I had to wait a long time for the insurance approval and the appt. so I am having the tests (from what I have read on this site and others she ordered some of the right tests) but I am calling my gp tomorrow to request a different neuro. I have not dx yet but what ever it is, it's causing enough stress all by itself. The neuro should help relieve the stress not add to it.
It scared me to be dismissed so out of hand by someone who is supposed to be helping you. I have the guts and knowledge to know I need a doc I can work with but I know there are those out there that do not. I tell my kids all the time that you don't need to pay people to be rude to you, you can find people to be rude to you on the street. So do what I am doing and find a doc you can work with. We deserve better. Good luck and take care.
Traci
ditto ... welcome to you ... michelle , everything will work out .. and we all deserve better ... :angel:
Bearygood
01-14-2008, 11:02 AM
Michelle, good luck with your appointment today! Let us know what happens.
Traci, welcome, and good for you for being so proactive! I hope the new doctor gives you the attention you deserve.
Traci, welcome, and good for you for being so proactive! I hope the new doctor gives you the attention you deserve.
Angeliz8385
10-15-2008, 12:31 PM
Blessed....
What did you ever find out?????
Remember me? Angeliz8385....
Im having the same exact symptoms
What did you ever find out?????
Remember me? Angeliz8385....
Im having the same exact symptoms
workman05
10-16-2008, 10:04 AM
Blessed,
My Heart goes out to you ,for I know what you are going thru,I am going thru a similiar situation with my neuro.He was so late for my last appt,He just rushed thru and didnt even give me a chance to ask him anything,I pray you get some good results,God Bless,Woodman
My Heart goes out to you ,for I know what you are going thru,I am going thru a similiar situation with my neuro.He was so late for my last appt,He just rushed thru and didnt even give me a chance to ask him anything,I pray you get some good results,God Bless,Woodman