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.
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.
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.
Do you drink diet soda? Use equal in your coffee. You sound like your going though what I did. If so google aspartame poisoning? It's not in your head.
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.
Thank you again!
Victoria
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.
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
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
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 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.
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...:(
You too, sweetie! Hang in there!
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.
Hope you feel better soon.
Victoria
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.
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. :)
Thanks for listening.
Victoria
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.
Love Sarah
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
cord.
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.
Mary
All in all, Victoria, this sounds like a promising appt and your attitude sounds like it is in the right place. Yes he is so wrong about the pain part but he is willing to keep looking.
good luck with the next step, Lulu
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.
I'll update everyone as soon as I know more!
Victoria
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!
Carol
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.
Keep taking it one day at a time!
Hugs, Red
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.
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.
Mary