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Neurologist Appointment Tomorrow!!! Excited, nervous and scared! Sorry for the LONG post...hope some of you read and give me your 2 cents!
Well I have my 2nd appointment to my neurologist tomorrow and needless to say I am excited, nervous and scared all at the same time. So much so that my stomach has been in knots all day!! I think that the MS hug is partly to blame and has been horrible the last 4 days! I dont' know how people deal with this long term!! I started crying last night cause it got so bad I thought I was having a heart attack...cause most of my symptoms are on the left side of my body...left arm pain and such. But I know it was just MS hug and nervous feelings for tomorrow.
Anyway, the last time I saw this guy was in August of last year. I really liked him at first, he thought it was MS too because I failed the foot test, had L'Hermittes and the strength in the left side of my body was WAY different (less) than my right and I fell over three times when he had me stand up straight with my eyes closed. Which I still cannot do and my friends think it's hilarious to watch me do it...not in a mean way, but they don't have these problems and thing it's outrageous that someone can't stand up with their eyes closed. It's gotten to the point where I can't close my eyes in the shower cause I am afraid of falling over in the shower! Thank goodness for the hand bar I have in there. Now I just need a seat for my shower cause I'm sick of sitting on the tub...sorry, getting off track!
I really liked this neurologist because he agreed that it wasn't all in me head and ordered an MRI of my brain and C-Spine...not my L-Spine cause my walking was fine...well not anymore! Plus I'm having bladder problems (can't empty my bladder all the way and it sneaks up on me to the point where I have to run too the bathroom or I'm wetting myself...although it never empties all the way, I also have to sit there for about 20-30 seconds before I even start going, even though I have that urgency! Sorry if TMI...I just want to air all my issues so I can get some good suggestions of how to approach this guy.
The reason I want suggestions is because when my MRI came back with only one lesion in my brain and my PCP (she is no longer my PCP) she said it was all in my head and I quote "need to exercise 6 days a week and go to counseling". She thought it was all in my head took me off of ALL prescriptions without a taper! And so when I went back to my neurologist he read that she said I was stressed, that he said "lets wait and see". I was heart broken cause I knew there was something wrong with me, my husband knew there was something wrong with me cause he had seen the changes and how I've gone down hill, before he left for Iraq and before we even knew he was leaving for Iraq! *Had to clarify that because my doctor thought it was because of that that I was stressed and all these problems were going on*.
Well here are the things that have been going on lately with this new flair. FYI...from October-December I was doing awesome...hardly any problems other than muscle twitching and weakness in my left arm. I thought..."wow, it was all in my head." Then in December it was like I was trapped in my own body...and it was fighting against me! I have to wait about 10-15 minutes after my alarm goes off in the morning just to get out of bed because my legs will NOT listen to me. They won't move and I feel like I am paralyzed...this doesn't happen every morning, but I would say 3-4 days out of the week.
Then the new symptom with my bladder...constant feeling of urgency, even though I can't empty it all the way and when I sit down to go I can't start until about 20-30 seconds and feel like I have to talk myself into going!
Balance issues...I run into walls, vertigo has been awful on and off, and have to hang onto the counters or railing all the time now. I cannot put my left foot all the way down, my heel and back of my left leg have gone numb and feel like they are non-existent...which has been constant in the last few weeks. So I think as a result of that my knees, hips and back are in HORRIBLE PAIN!!
L'Hermittes...ugh...hate this. I have 2 little girls who demand my attention 24/7 and I can't look down at them or look down period without horrible shocks going all the way down my spine to my left leg...which makes my left leg kick out!
My vision has deteriated even though my eye doctor says my nerves look fine, but have 2 blind spots and my right eye has gotten way worse and had to bump up my prescription for my glasses, light sensitivity *****!!!
My left hand and arm is more often than not cramped up and my hand is in a fist and wrist is turned in. My right arm however has more strength, but when I hold it out it shakes...what is that a tremor I think?! It doesn't do it when I am using it usually...sometimes at the end of the day it will cause I'm tired, but during the day when I use it, it doesn't shake...but when I stop or hold it out it shakes.
My cognitive abilities, thinking, speech, reading, understanding what someone is saying to me, finding the words...wow...I feel like I am losing it! I have been asked 3 times, once by a total stranger at the grocery store if I was drunk or on drugs cause my speech was slurred so bad. My brain doesn't compute what someone says to me right away...so I always ask "what? or pardon me?" and then a few seconds after that I'm like "never mind...I understand you".
Bladder Issues: Constantly feel like I need to go, and often have to run to the bathroom! When I get there I can't go right away...like I'm nervous or something and takes about 20-30 seconds for me to work myself up to going. And it never seems to empty my bladder all the way! Also have bowel problems, started since middle school though, so I don't know if I can contribute those to MS symptoms.
Sensations: I have sensations on my thighs mostly...mostly left thigh. I feel like I have wet myself...it's all warm and tingly. I have to check myself all the time. And have gotten to the point where I have to wear things all the time because I am worried about wetting myself. Also have shocks and pins and needles off an on all day in my left arm and left leg primarily. Sometimes I feel like it's in my right side too...but mainly I notice it in my left.
Spasms: My legs, arms, back and stomach spasm all the time...painfully and to the point when it's done I feel like I have just done a very extensive workout...sore and weak. It wakes me up at night! I hit myself in the head the other night cause my arm was spasming so hard! The worse is when my back or stomach start doing it cause that is just painful and makes me feel sick to the point where I think I might throw up!
Well that's all I can think of for now. I guess I just wanted some inut on how to approach my neurologist with all this, since he is the one I saw last time who basically dismissed me because my PCP at the time wrote that I was stressed and needed exercise (mind you I was a size 12, 5'5" and at 160 lbs....now size 10 got down to 152) I don't think I'm obese, but could stand to lose a few more pounds definitely...but cant understand how she dismissed my symptoms on me being overweight! I was mad and I'm just worried about being dismissed again, cause honestly I am stressed, depressed and have anxiety...but because I feel so horrible all the time and don't know if the next day I won't be able to walk or will fall down the stairs with my 2 year old.
So please, if anyone can give me any suggestions on how to approach my neuro tomorrow and have better chances on him not dismissing me that would be awesome. I am hoping he will start me on something to treat the symptoms at least because it's been horrible lately!
Thank you all! And sorry again this post is so long. I tried to break it apart so it's easier to read. Thank you all!!!
Victoria
Anyway, the last time I saw this guy was in August of last year. I really liked him at first, he thought it was MS too because I failed the foot test, had L'Hermittes and the strength in the left side of my body was WAY different (less) than my right and I fell over three times when he had me stand up straight with my eyes closed. Which I still cannot do and my friends think it's hilarious to watch me do it...not in a mean way, but they don't have these problems and thing it's outrageous that someone can't stand up with their eyes closed. It's gotten to the point where I can't close my eyes in the shower cause I am afraid of falling over in the shower! Thank goodness for the hand bar I have in there. Now I just need a seat for my shower cause I'm sick of sitting on the tub...sorry, getting off track!
I really liked this neurologist because he agreed that it wasn't all in me head and ordered an MRI of my brain and C-Spine...not my L-Spine cause my walking was fine...well not anymore! Plus I'm having bladder problems (can't empty my bladder all the way and it sneaks up on me to the point where I have to run too the bathroom or I'm wetting myself...although it never empties all the way, I also have to sit there for about 20-30 seconds before I even start going, even though I have that urgency! Sorry if TMI...I just want to air all my issues so I can get some good suggestions of how to approach this guy.
The reason I want suggestions is because when my MRI came back with only one lesion in my brain and my PCP (she is no longer my PCP) she said it was all in my head and I quote "need to exercise 6 days a week and go to counseling". She thought it was all in my head took me off of ALL prescriptions without a taper! And so when I went back to my neurologist he read that she said I was stressed, that he said "lets wait and see". I was heart broken cause I knew there was something wrong with me, my husband knew there was something wrong with me cause he had seen the changes and how I've gone down hill, before he left for Iraq and before we even knew he was leaving for Iraq! *Had to clarify that because my doctor thought it was because of that that I was stressed and all these problems were going on*.
Well here are the things that have been going on lately with this new flair. FYI...from October-December I was doing awesome...hardly any problems other than muscle twitching and weakness in my left arm. I thought..."wow, it was all in my head." Then in December it was like I was trapped in my own body...and it was fighting against me! I have to wait about 10-15 minutes after my alarm goes off in the morning just to get out of bed because my legs will NOT listen to me. They won't move and I feel like I am paralyzed...this doesn't happen every morning, but I would say 3-4 days out of the week.
Then the new symptom with my bladder...constant feeling of urgency, even though I can't empty it all the way and when I sit down to go I can't start until about 20-30 seconds and feel like I have to talk myself into going!
Balance issues...I run into walls, vertigo has been awful on and off, and have to hang onto the counters or railing all the time now. I cannot put my left foot all the way down, my heel and back of my left leg have gone numb and feel like they are non-existent...which has been constant in the last few weeks. So I think as a result of that my knees, hips and back are in HORRIBLE PAIN!!
L'Hermittes...ugh...hate this. I have 2 little girls who demand my attention 24/7 and I can't look down at them or look down period without horrible shocks going all the way down my spine to my left leg...which makes my left leg kick out!
My vision has deteriated even though my eye doctor says my nerves look fine, but have 2 blind spots and my right eye has gotten way worse and had to bump up my prescription for my glasses, light sensitivity *****!!!
My left hand and arm is more often than not cramped up and my hand is in a fist and wrist is turned in. My right arm however has more strength, but when I hold it out it shakes...what is that a tremor I think?! It doesn't do it when I am using it usually...sometimes at the end of the day it will cause I'm tired, but during the day when I use it, it doesn't shake...but when I stop or hold it out it shakes.
My cognitive abilities, thinking, speech, reading, understanding what someone is saying to me, finding the words...wow...I feel like I am losing it! I have been asked 3 times, once by a total stranger at the grocery store if I was drunk or on drugs cause my speech was slurred so bad. My brain doesn't compute what someone says to me right away...so I always ask "what? or pardon me?" and then a few seconds after that I'm like "never mind...I understand you".
Bladder Issues: Constantly feel like I need to go, and often have to run to the bathroom! When I get there I can't go right away...like I'm nervous or something and takes about 20-30 seconds for me to work myself up to going. And it never seems to empty my bladder all the way! Also have bowel problems, started since middle school though, so I don't know if I can contribute those to MS symptoms.
Sensations: I have sensations on my thighs mostly...mostly left thigh. I feel like I have wet myself...it's all warm and tingly. I have to check myself all the time. And have gotten to the point where I have to wear things all the time because I am worried about wetting myself. Also have shocks and pins and needles off an on all day in my left arm and left leg primarily. Sometimes I feel like it's in my right side too...but mainly I notice it in my left.
Spasms: My legs, arms, back and stomach spasm all the time...painfully and to the point when it's done I feel like I have just done a very extensive workout...sore and weak. It wakes me up at night! I hit myself in the head the other night cause my arm was spasming so hard! The worse is when my back or stomach start doing it cause that is just painful and makes me feel sick to the point where I think I might throw up!
Well that's all I can think of for now. I guess I just wanted some inut on how to approach my neurologist with all this, since he is the one I saw last time who basically dismissed me because my PCP at the time wrote that I was stressed and needed exercise (mind you I was a size 12, 5'5" and at 160 lbs....now size 10 got down to 152) I don't think I'm obese, but could stand to lose a few more pounds definitely...but cant understand how she dismissed my symptoms on me being overweight! I was mad and I'm just worried about being dismissed again, cause honestly I am stressed, depressed and have anxiety...but because I feel so horrible all the time and don't know if the next day I won't be able to walk or will fall down the stairs with my 2 year old.
So please, if anyone can give me any suggestions on how to approach my neuro tomorrow and have better chances on him not dismissing me that would be awesome. I am hoping he will start me on something to treat the symptoms at least because it's been horrible lately!
Thank you all! And sorry again this post is so long. I tried to break it apart so it's easier to read. Thank you all!!!
Victoria
That's a good suggestion. I think once I get the MRI's and reports back and look over them I might do that, if what I see is questionable. Not that I know exactly what I am looking for, but from what I was told from the neurologist there was nothing there. Thanks for the suggestion again!
Victoria
Victoria
For peace of mind perhaps you can get a second opinion on the MRI, eg: find a neuro-radiologist who will look at the actual pictures and give you their impressions. I don't know if this is something your insurance company would cover; probably not as it's to their advantage for you NOT to have a diagnosis. Perhaps something you could pay out of pocket for at a private clinic - if that's feasible. Just something to consider.
Definitely will call the hospital tomorrow and get copies of my MRI's. I am fine with not having MS. Now I just want to know what it is I have. If it's all in my head I am confident that the neuro-psych exam will show it and I can get treated for what ever is wrong with me. I just don't want to feel like crap anymore. I have NO energy, no memory, pain, numbness, bladder and bowel issues...and so on. Can something in my head be causing all this...I am going to find out. I'm not going to give up that's for sure!!! My kids and myself deserve better than this!
Can't take bubble baths...unless it's a cooler one. Heat definitely makes things worse!
I am going to call tomorrow and talk to my primary doctor and get another appointment with her to start treating the symptoms cause this is getting ridiculous. Plus, I take so much tylenol that I think that's why my liver enzymes are up. But that's all that I have...tylenol or alcohol and since I have kiddos I gotta care for tylenol it is!
Addi...Yes, I am married. He is deployed to Iraq right now, but very supportive. I don't tell him a whole lot cause I don't want him to worry and he needs to stay focused on his job there. But he is VERY supportive and was actually mad when my old primary took me off all my meds cause he could see how they helped and when I went off he saw how much it effected me negatively. We would watch my arms or legs move and look like there were worms or bugs under my skin making it move. And watch my fingers tremor...thought it was a little funny then. But then it started getting painful and it's not so funny anymore.
I am definitely going to get the psych exam! It can't hurt...at least I don't think so.
LOL
Thanks for all the help everyone!
Victoria
Can't take bubble baths...unless it's a cooler one. Heat definitely makes things worse!
I am going to call tomorrow and talk to my primary doctor and get another appointment with her to start treating the symptoms cause this is getting ridiculous. Plus, I take so much tylenol that I think that's why my liver enzymes are up. But that's all that I have...tylenol or alcohol and since I have kiddos I gotta care for tylenol it is!
Addi...Yes, I am married. He is deployed to Iraq right now, but very supportive. I don't tell him a whole lot cause I don't want him to worry and he needs to stay focused on his job there. But he is VERY supportive and was actually mad when my old primary took me off all my meds cause he could see how they helped and when I went off he saw how much it effected me negatively. We would watch my arms or legs move and look like there were worms or bugs under my skin making it move. And watch my fingers tremor...thought it was a little funny then. But then it started getting painful and it's not so funny anymore.
I am definitely going to get the psych exam! It can't hurt...at least I don't think so.
LOL
Thanks for all the help everyone!
Victoria
I am so sorry things didn't go as planned. :(
I would definitely get copies of the MRI films and reports. Do this with ALL tests you have done. If you got your MRI at the hospital, you can get copies there. Just call their records department.
I think it should be a personal decision for you to get the psych involved. Personally, I would do it. But, I am not afraid, resistant or intimidated by the thought of therapy. It sure helped me when I went. :)
Just so you know, your primary doctor can administer drugs for your symptoms. I know of several people who do that. My primary takes care of all my symptoms.
Just know that you are not alone in your feelings. So many people are in limbo and go through this too. So, take a breath and try to relax some. Take a nice scented bubble bath or something. Gosh, I miss those. Okay, take one for me! Lol
Forgive me cog issues...are you married? If so, is he supportive?
Addi
I would definitely get copies of the MRI films and reports. Do this with ALL tests you have done. If you got your MRI at the hospital, you can get copies there. Just call their records department.
I think it should be a personal decision for you to get the psych involved. Personally, I would do it. But, I am not afraid, resistant or intimidated by the thought of therapy. It sure helped me when I went. :)
Just so you know, your primary doctor can administer drugs for your symptoms. I know of several people who do that. My primary takes care of all my symptoms.
Just know that you are not alone in your feelings. So many people are in limbo and go through this too. So, take a breath and try to relax some. Take a nice scented bubble bath or something. Gosh, I miss those. Okay, take one for me! Lol
Forgive me cog issues...are you married? If so, is he supportive?
Addi
I would go ahead and get the MRIs and reports, just so you can see what they're looking at.
A neuro-psych exam will help prove that this is not psychological - I recommend it.
A neuro-psych exam will help prove that this is not psychological - I recommend it.
Well I can't say I'm surprised and that I'm not disappointed. The neurologist receptionist called and told me that my MRI was normal and that my neurologist was canceling my lumbar puncture! She said that he suggests getting a psych exam. Umm...okay...is he telling me I'm crazy?
Well now what...I'm lost again. Really sad...disappointed...I guess I'll go back to my PCP and go from there. I can't live in this pain, numbness and confusion for the rest of my life. I just feel like crying.
Not that I was hoping it would be MS, just hoping they'd find something...anything...anything at all.
I want to get the reports and MRI's from this one and the one before to look over myself. Cause I think that both times my neurologist just read the report and didn't look the pictures over at all. Do I call the hospital to get those or the neurologist office? I really don't want to talk to them again after them suggesting a psych exam. I don't know whether or not to take offense to that or actually go do it.
Ugh...:(
Well now what...I'm lost again. Really sad...disappointed...I guess I'll go back to my PCP and go from there. I can't live in this pain, numbness and confusion for the rest of my life. I just feel like crying.
Not that I was hoping it would be MS, just hoping they'd find something...anything...anything at all.
I want to get the reports and MRI's from this one and the one before to look over myself. Cause I think that both times my neurologist just read the report and didn't look the pictures over at all. Do I call the hospital to get those or the neurologist office? I really don't want to talk to them again after them suggesting a psych exam. I don't know whether or not to take offense to that or actually go do it.
Ugh...:(
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