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!!!
Hi victoria, you did a great job of breaking this apart and spelling out your problems.
Any neuro is probably not going to give you the time to review all of the probnlems you have outlined here, so you need to focus on the ones that are most troublesome. Make yourself a list and hand it to him if you have trouble expressing yourself with the doctor.
A key part of this is to be sure to tell the doctor how these symptoms are impacting your daily living. This is even more important than the symptoms themselves. Obviously at the top would be trouble taking care of your children because of the L'hermittes.
Also, don't mention the internet, at all. Since they have already flagged you as stress from your husband's deployment you don't want to muddy the waters any more.
Your mixed emotions about the appt tomorrow certainly makes sense - I sure hope you can move forward when you see this doctor.
wow!! hi!! i have to say being overweight will not make you walk in to walls -unless someone is way over weight- gosh , the warm feeling, you have said so many things that i do,
but if they give you a dumb answer- get another -one that is good!
hang in there!! tick
I want to wish you luck at your appt tomorrow. Do you have anyone you can bring with you that could help relieve your stress and take notes for you? It's so hard to listen well if you are stressed.
Also, make sure you bring your list of questions. Don't leave the office until they are all answered, and you have a plan to move forward - you know how the doc is going to help you get to the bottom of what's going on.
Present your symptoms in a very matter of fact way. And Lulu has a great idea - not mentioning the internet.
If things he's saying don't make sense to you make sure and ask for clarificiation. A good neuro should be used to dealing with patients that they need to repeat or clarify things for. Don't worry at all about his schedule - take all the time you need.
Assume that he will help you, and if you feel invalidated or like he isn't helping, then state that. What you don't want to do is leave being frustrated.
I have a follow up with my neuro on Tuesday so I know just how you feel. It's good for me to be thinking about all these things as well.
Best of luck. I'll be thinking of you tomorrow and praying you have a great appointment and get some answers and help/support!
Lulu gave excellent advise and you have a very good start.
I would just be careful not to approach this appointment with a defensive attitude. The neuro has seen some signs in his past exam. It's not very unusual for them to want to wait and re-evaluate six months down the road. State your symptoms simply. Share how it limits your life. He'll ask questions when he needs more information.
Example: I had been feeling so much better for a few months. In December, everything started to fall apart again.
I lose my balance when I close my eyes. It's gotten so bad that I sit down to shower so I won't fall. Even with my eyes open I've bumped into walls because everything is spinning and I'm off balance.
I'm having lots of bladder problems. Urgency hits and I can't get the the bathroom fast enough and leak (say how much). I've had to start using a pad to keep my clother dry. At other times, once I get to the bathroom I have trouble getting the flow started and don't think I'm getting it all out (give the reason you think this).
When I bend my neck to look down I get a shock down my back and into my leg.
My vision is blurry.
My legs sometimes won't move when I want them to.
This arm (left) cramps and this one (right) shakes when I try to hold it up.
In general, I get weird sensations in my legs and muscle spasms that are painful. It's been very hard to get my daily activities done. It's even harder to enjoy life right now.
I'd give this guy every chance to prove himself as caring and knowledgable. Don't try to guess at why he asks a question. Just give honest answers. And yes, it can be very helpful to have someone along to back up your account and hear what the doc is saying.
Well I just got home from my neurologist appointment. He has me scheduled for a MRI tomorrow at 6:30pm...just of my brain which made me a little mad, but didn't want to fight with him about it and I could stand up straight with my eyes closed and he saw how I was walking not being able to put my heel down without falling and back of leg being numb. He did say with and without contrast this time and it is at a hospital that has 3T machines, so that I am happy about.
My LP is scheduled for Feb 17th...I went along with it just so it might show some proof. Since he still didn't give me anything for any of my symptoms, which *****...but I understand them not wanting to pump me full of the wrong medications. So I didn't push for anything.
He did however say something that made me question his knowledge of MS at all...cauase I told him at times I have really bad pain. He said "well I think MS, but pain isn't really a symptom of MS patients" or something like that. So I thought...wow...obviously he doesn't know anyone who has MS. He also noted my tremor in my right arm and memory issues. So hopefully it will show something...I just want some reason for this...I'm sure a lot of you can relate.
When he said he wanted to do another MRI cause he suspected MS, I asked "didn't the last MRI rule out MS". He said "some times the MRI's won't show anything at first, so it doesn't really rule out MS". I knew that, but was playing stupid cause I didn't want him knowing I was doing my own research so he wouldn't think I was convincing myself I had anything.
Thanks for all the suggestions. I'll let you all know how it goes.
I'm glad your neuro is following up with more testing and taking you seriously. I do wish some doctor would start giving you some help with symptoms though. Maybe you need to pick out the thing that most limits you on a daily basis and let a doc know that you need help NOW with control of THIS thing.
There are times to be more directive in what we need. There are other times when the limitations of life and medical care dictate that we learn to adjust and find ways to live through our symptoms rather than control them. Sad but true -- with or without diagnosis. It's never too early to start thinking about such things as each of us must decide for ourselves where our tolerance level is and locate help to maintain those boundaries.
I'm going to say this here Victoria but it isn't specific to you (and not a thing you did wrong). It seems many of us may need a reminder that no matter how much evidence we may see to the contrary, our doctors are human too. Sometimes they repeat themselves without cause. Sometimes they forget a thing they meant to say. Sometimes they are distracted by involuntary interruptions or side-tracking of their thoughts. Sometimes a statement that clearly means one thing to them is heard very different after entering our ears. We all complain about this happening to us. It isn't always because of MS. It's part of the human condition.
It's normal to hang on and evaluate every word and statement and search for meaningful clues in conversation. We have so much more invested in the end result of each appointment. I've had questions and doubts at many appointments too. I've encountered road blocks and dead ends but I've also found answers, sometimes on side roads and sometimes on a revisit of an old avenue.
I usually have found the docs much more willing to answer honest, straight forward questions. Once a doctor has mentioned the possibility of MS himself, the average person would likely do a least some research. I wouldn't spout off a long list of online references but there is nothing wrong with saying, "When you mentioned the possibility of MS at the last visit, I decided it might be a good idea to start educating myself. It seems there are different opinions about when MS lesions will show up and exactly what is needed for a diagnosis. What types of things will you look for to diagnosis what's happening to me?
Playing games and asking trick questions can backfire quickly. I'm glad your doc gave you a simple and honest answer instead of feeling threatened or getting defensive. You might have walked out with no test orders. (I could be way far off base here because words on paper here can't convey the same clear meaning of your spoken presentation then.)
Anyway, we all do well to find the delicate balanced that allows a doc the time and freedom to do his job without taking on too much of the passive stupid patient role. IMO, that's how I fit into the 'team' of doctors, therapists and caregivers involved with any of my health care.
Unfortunately Victoria, neurologic diagnosis is very often a slow process. You know that already. I'm just reminding you and saying that I think this guy is on an OK track. Good luck with patience in this next waiting period. You have lots to think about in the tube tomorrow :) Make them good ones whenever you can.
He might be the neuro that does the dx but you may find yourself searching for a neuro to treat the dx. Any neuro that has the opinion that MS is not painful is not one you want to find yourself being treated. Not painful? Gee, just ask around. Pain is what sent me on my search.
Hi Victoria, I have been watching your thread and was anxious to see how your appointment went today.
It sounds like you did a great job today interacting with your neurologist. I know it's hard when your time with the doctor is limited and so much time is needed for him/her to think things through. The fact that he is ordering more tests is a good sign that he does not think this about your 'stress-levels'.
I can't remember if you had a positive LP before and he just wants to see if you have more O-bands or not. Sometimes I think doctors re-order things in case things have changed.
I know his comment on the pain issue was dis-heartning, I think doctors just think out loud like the rest of us. I suggest trying to focus on what he said right before that the "I think MS..." that he said. If he didn't think MS he wouldn't be ordering your MRI again.
About a year ago I had a doctor tell me "...well you don't want to have MS because they ..." at which point she stopped herself. I think she was surprised it came out of her mouth.
As far as treating your symptoms, I wish they could do something. Did you ask for pain medicine or describe the pain to hime. That would help to have your pain decreased. Or maybe ask for a referral to a pain doctor.
It is going to be a time of learning how to conquer or accept some of these things. For example, when I know I will have to go out of the house or to an appointment I start planning a couple of days ahead. I will slowly figure out if I have clean clothing or if I need to wash my hair. Washing my hair is horribly difficult, I have had to let it go--one time recently 11 days in between. So, washing my hair. Then not doing anything the day before. Then having the alarm go off very early because how long it takes to get out of bed, get dressed one piece at a time. That's a way I have adapted.
But I don't have children so I know you are much different with all your family needs,
I am just going to hope for you that they find answers very soon so you can begin treatment.
Glad to hear your appt went pretty well. I know you're disappointed that he's not treating the pain - but once you get the results of your MRI maybe that can be a point of discussion for the next meeting. Is he going to meet with you again soon to review the MRI?
I think it's interesting that he's only doing the brain with all that you have going on. Also, if they find more lesions on the MRI - are you still going to have the LP? At least it's good that it's scheduled in case you need it.
Best of luck to you tomorrow, and try and enjoy your time doing nothing in the MRI machine!
Thank you for all your support and suggestions. I think he is a good neurologist, but I will definitely try to see a MS specialist. Through the whole appointment he was writing things down on a sheet of paper, crossing things off then writing other things down...so I felt like he was actually trying to figure things out and not just listening to me and brushing things off.
Wiggles94: If I can get a definite diagnosis from him without the LP I will definitely opt out of the LP. I've had 2 spinals with my c-sections before, so I know kind of how the LP will go...I didn't like those at all, but if it will help my diagnosis and making it easier for my insurance to okay the medications I will do it. I am also shocked that he didn't want to get a spine MRI...but I told him I was really worried about my speech and cognitive problems, so maybe that's why he focused on that.
RedFlame: I have not had a LP before. I have had a MRI in August 2010 that showed one lesion (at the time he didn't feel like it was enough to diagnose me and that darn McDonald critiera thing). But last MRI I didn't get contrast. With this one he ordered with AND without contrast. With the new things going on I'm hoping that will help something shine through a little better.
I didn't ask for any pain meds because I was worried he would think I was just searching for pills since he stated "most people with MS don't have pain". So I didn't want to say well I have lots of pain...then him say well then it''s not MS. I dunno...I was just worried and didn't really know how to go about things. I forgot to mention my bladder problems which I will when I go in there to discuss the results.
Sumanadevii: That's what I was thinking when he said that most MS patients don't have pain...I was like OMG...seriously?? I didn't say anything, cause he did genuinely sound and act like he was worried about my cognitive issues and didn't want to mess that up. Since that is one of my main issues with whatever is going on with me. And he noted the Essential Tremor as he called it in my right arm before I even said anything about it. I didn't think it was that noticeable.
Twopack: I was thinking about how I asked that question about the previous MRI ruling out MS. But the way things were left with my last appointment, I figured it wouldn't hurt because during the last visit he noted that he thought it was MS, but when the MRI came back the receptionist called and told me the MRI was normal except for one lesion and everything was fine. Naturally I was upset, but not on the phone and said "thank you for calling and letting me know". I took a break from this site and everything for a while because my symptoms did go away a little after that and I thought...wow, maybe this was all in my head and stress or whatever. Until December when my body got crazy again...
Thank you for your advice, next time I talk to him I will tell him I did a little research and would like a MRI of my spine...I kind of wish my appointment wasn't tomorrow so I would have time to talk to him about adding a spine MRI too...but my appointment is tomorrow night.
I do understand that doctors are people too...I think we all lose sight of that once in a while because we expect them to have all the answers and help us, because that is their job. I know that this is going to be a long process...I just want to start feeling human again for my kiddos. When I go back for these results if he says he doesn't think it is MS, I am going to ask him more questions of what it could be and to start treating the symptoms cause it's getting harder and harder to do my daily activities, be a mom and just be normal.
TO ALL: Thank you all for your support and suggestions with all this. I know that the chances of me being diagnosed shortly are slim to none, but I am crossing my fingers! I don't mean being diagnosed with MS...but being diagnosed with ANYTHING...just finding out what is wrong. Because there is definitely something wrong with me, how I feel everyday is not normal. And I thank you all for the support and caring words to make me realize that I shouldn't just live with it and to fight for myself.
Do what you feel is right for you (of course) but I'd let this doc be in charge for a while longer. His orders are in line with these recommendations of the Consortium of MS Centers (an international group of neurologists and radiologists):
For Patients with a Clinically Isolated Syndrome (CIS) and suspected MS:
Recommendations for the Baseline evaluation:
• A Brain MRI with gadolinium
• A Spinal Cord MRI if there is persisting uncertainty about the diagnosis and/or
the findings on Brain MRI are equivocal.
• A Spinal Cord MRI if presenting symptoms or signs are at the level of the spinal
There doesn't seem to be a clear indication to order spinal MRI yet. BTW, if/when that is ordered, it wouldn't include the lumbar spine as the spinal cord ends just before entering the lumbar spinal vertebrae. No cord = no lesions.
Again, I'd be checking to be sure you understood your doctor correctly about the pain. Did he really say/mean that pain is NOT a part of MS? Could he have meant that pain isn't usually the most prominent presentlng (initial) symptom? Or something else?
You may indeed end up seeing an MS specialist for treatment if you are diagnosed but MS specialists aren't a guaranteed positive experience and I'd hate to see you dismiss a promising doctor on a potential misunderstanding.
As Lulu said, this seemed on the whole to be a promising appointment. We can learn a great deal about MS but it will be a long time before we can catch up with the understanding a doctors education gives him.
Just to say that I also think it sounded as if your appointment went Ok and I just wanted to add my support to everyone else's along your journey and hope that the MRI and lumbar puncture go OK. Let us know how you get on.
Well I got home from my MRI about 2 hours ago. I didn't get anything for the anxiety this time and during the whole thing I wish I had! Wow...those things are sooooo noisy and just uncomfortable!
I got the contrast this time...although they couldn't find a vein to inject it in but when they finally found one they said they only had to do 3 frames or whatever they said. Not sure what that means.
But I was in that darn machine for a little over an hour. Glad it's done. Although I hope it finds something, I don't necessarily want it to be MS. Just something to explain what I'm going through and to prove it's not all in my head! I'm sure you guys can relate.
I shouldn't really get all worked up about it, but when I was walking about all the lady said to me was "you held still, you did good". Cause I told her I had a tremor and my head was bobbing like I was saying yes, so I did my self to hold my head still. Last time I got my MRI done it took about 30 minutes (without contrast) and they had told me that they didn't see anything worrisome but they would send the report to my doctor.
I know, I know...I really shouldn't think too much into what the radiologist lady said, but she was treating me a little different then when I got in there. She didn't help me on the machine or lay down, but when it was over she helped me sit up and told me to wait a while before I got off the machine and then asked if I needed help walking. Ugh...I should just go to bed so I don't work myself up about it.
In all honesty...I hope there is nothing there...and that they figure out it's just a vitamin deficiency...but I just want the process to be over with already. Okay...I'm done making a mountain outta a mole hill.
Have a good night everyone and stay warm during this snow storm...here is Michigan it is FREEZING and the roads were pretty slick...but that's Michigan. :)
There's definitely pain with MS - the last three days, I've been having some bad back pain that I'm having to control with Flexaril.
You know, I stuck with the neurologist that dx'ed me for three years. Even though I knew that he wasn't the best neuro, I stayed with him because it was a lot of work to get referred to somebody else. He was confused about the difference between spasticity and spasms, didn't really understand my cognitive problems, and thought MS was only numbness, weakness, and weird sensations. Finally I went through the process of getting that office to refer me to UTSW's multiple sclerosis clinic, and now I've found out how much wasn't getting done. Blood tests, monitoring, eye tests, supplements - all that was basically ignored with my general neuro.
So even if he dx'ed you, definitely go through the process to get referred to a specialist.
Thank you for your advice. If I do get diagnosed I will definitely be looking for a MS specialist. We have some good hospitals, U of M and such here...it's a little drive, but worth it to find someone who is a little more knowledgeable than the guy I'm seeing now. I'm not saying he isn't a good general neurologist...cause he is. He's never denied me tests or told me I was crazy...but I know he isn't caught up on the whole MS thing. I know I'd have a better outcome with treatments and medication, if I do get diagnosed, with a doctor who knows more about MS.
Sorry to hear about your back pain lately...I feel your pain. Since my gait is off, my knee, hip and back all hurt up to my left shoulder. Back pain is horrible...seems like no matter what position I am in it hurts. Just gonna try and deal with it till I get the results of my MRI and then go from there.
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.
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?
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.
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.
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!
When you finish reading my story, I think it will give you a good idea why people stop searching for an answer and give up.
2002 - Family Doctor: "There is nothing wrong with that foot. The blood is flowing fine."
2002- Emergency Room: Unable to move off ladder. "Stress and anxiety. Check up with your PCP."
2003 - Family Doctor: "Stress can cause this. How are things at home?" ( My foot no longer moved with me. I was never sure of exactly where it was when climbing."
2004 - Internist: "The cscan says a little bit of arthritis. I am going to order some anti inflammatories and PT." I told her it was not a "little bit" of anything. I could hardly walk due to the pain.
2004 - Emergency Room: Heat related. "Stress and anxiety. Follow up with your PCP."
2004- Rheumatologist: "No, I don't see anything. You know depression can cause these symptoms."
2004 - Vascular Surgeon: "Your vascular system is fine. You have Raynaud's disease." Would it cause me to be unable to drive and lift my foot? Can it be in one foot only?"
2005 - Chiropractor - "One hip is higher than the other. You need shoe lifts."
2006 - Pain Clinic - "It's in your lower back. Let's try these shots." No results
2006- Pain Clinic - "We can insert these plastic things between the disk (I can't remember the exact words he used). It will provide a cushion and stop the pain." No results
2006 - Pain Clinic - "I think you need to see a psychologist. There really isn't anything more we can do for you."
2007 - Internist - "I want you to see an orthopedic surgeon." None would take me because she had already stated I did not need surgery. She also at this point stopped taking my calls.
2007 - Neuro - "The MRI of your brain shows no problems. However, there is a pinched nerve that in your cspine." I asked if that is enough to have caused all these problems. I can no longer work. I can no longer drive. I can hardly walk. The answer, "Yes without a doubt."
2110- New Neuro - After losing the use of my right hand. "It's MS." I began treatment the next day.
So you see, after being beaten down by the medical professionals, I began to blame myself and gave up. Had I not lost the use of my dominate hand, I would still be sitting in the first neuro's office. As I sat with him my body lost more and more strength. I lost control of my bladder. MS was written all over me. His last words to me? "You need to take vitamin D and get on medication for depression. It is the ONLY thing any neuro is going to do for you."
Your choice. Fight it. Keep searching or keep losing body strength.
OMG...I can't imagine fighting for that many years about this. It's only been a year and I'm already worn out. I'm a cry baby I know...but wow, I can't believe what some of those doctors say to you and treat you. This is absolutely ridiculous!!! How can doctors go to medical school to help people all those years, and then get out and just give up with the going gets tough...
Ugh...makes me mad. But I will keep fighting until I find an answer. If it's simple then good, if it's something that takes years then at the end of it all I will be fine as long as I have an answer. I just wanna know...and get some kind of treatment so I can feel normal again. I don't even know what normal feel like cause I can remember back in high school going through some of these symptoms and just ignoring it cause my dad was the type of person who wouldn't take us to the doctors unless we were dying, cause we couldn't afford it.
Thank you for sharing your story with me...I know that this won't be easy, but for my sake and my children's skae I do need to keep fighting and keep searching for answers.
I sincerely doubt that aspartame is gonna be causing most the problems on this board. I know you just found out you had posioning from it but most of us have little if any problem. If this were true, the stuff would be off the market. I have a friend that has a sensitivity to food colorings. I doubt that the problems on the MS board are gonna be caused by that...They are unusual t hings....so unusual there isn't a board for it here. Maybe talk to the modeators about starting one. It might be interesting.
Some people are sensitive to Aspartame. It is not a poison, but a combination of amino acids. You can see my response to "whaaaa's" post. It is more non-scientific BS. Not based in science but based in fear.
Her statements are specious. Look up the definition. Yes, it sounds plausible and we'd like to believe it, but it is clearly false when we look at the supporting evidence.
Clearly false? I think you are clearly in denial. It most definitely is a neurotoxin = poison... If you like it, drink up. I know how sick I was and how much better I feel now without aspartame. I guess it must have all been in my head, and I wanted to believe it so I got better. What ever works! I think that's what they also told MomofTwo, that it was all in her head, go to the shrink and take a pill. I was just trying to help her in making a suggestion that if she uses the stuff maybe she should give it up for a week and see what happens..It's harmless and it may help. As for Non-scientific? You'are clearly ignorant of the scientific facts. I wish you all well, signing off the MS board.
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