Aa
Totally confused and a little bit scared
Ok here it goes, I am a 38 year old mom of 3 kids that keep me very active, but I am now experiencing my 4th episode of something weird going on inside me. I am needing the expertise of people that truly have been diagnosed w/ MS to help me out here if you would be so kind. Three years ago I woke up and couldn't remember how to tie my shoes, within 20 seconds I remembered again, the next few days my legs hurt, and they would tingle. That was about it and it all went away, the only reason I remember it is because of the not remembering how to tie my shoes, since then I had a couple more times when my legs would just ache, but the pain would come and go then the tingling started that too would come and go. I have had strange "brain farts" that seem so off the wall I can't believe that my brain is even in my head!! Then everything cleared up until a couple weeks ago and it's been pure hell, I have pain in my legs it's like they cramp up but don't ever uncramp, I have tingling in my legs, only from my knee down to my toes, I am dizzy at times, I have a ton of vibrations within my body, hard to explain, it feels like I swallowed someones pager or something! I have a strange pain around my chest all the way around me that comes and goes, I have a pain that starts in my neck and goes up to behind my ear, when that happens then my ear starts to ring. Ok I know that I just unloaded alot of info here and I probably forgot some important info but I thought this would give you an idea of what I am going through. I am seeing my family doctor Wed. but I am afraid he is going to think I am totally nuts if I tell him all this!!! Any kind of input would be greatly appreciated!
Linda,
I have met one Gentleman, a former attorney, who has experienced the same sort of memory problems you report. Please note the word 'former', the difficulties he experienced forced him out of the profession. He has written a book Cognitive Impacts of Multiple Sclerosis which is available from the Wisconsin Chapter of the NMSS.
Not to dishearten you, there are all sorts of techniques available to help keep things on track.
Do please post your results.
I have met one Gentleman, a former attorney, who has experienced the same sort of memory problems you report. Please note the word 'former', the difficulties he experienced forced him out of the profession. He has written a book Cognitive Impacts of Multiple Sclerosis which is available from the Wisconsin Chapter of the NMSS.
Not to dishearten you, there are all sorts of techniques available to help keep things on track.
Do please post your results.
So glad your doctor is a keeper. He's great for responding so quickly. The cyclo should help you. with and without contrast.they will do one set of pic's without dye, inject dy, then retake pic's.......at least that is my understanding... good luck for a quick dx. Even if it is MS, will be good to know sooner than later, and you can get started on meds.Please post results.
Well, went to the dr. today and I have to say I am in love, he is the most wonderful doctor I have ever seen!! He listened to everything I had to say and he did not think I was nuts!! He mentioned a stroke, but said he didn't think that was likely, he did mention those two tiny letters "MS" that mean so much to everyone, but obviously at this point he says he needs to rule things out so after a bunch of lab work, he also is having me get an MRI tomorrow of my brain only, I couldn't believe it would be that quick!! It is going to be w/ and w/out contrast, whatever that means?? Can someone help me out w/ that? And he gave me Cyclobenzaprine for the pain I have been having, does anyone know if that is a good one to take for pain? He also said to take 4 Motrin 3x/day, does anyone else do that and does it help?? Anyways it appears that I am on the road to wherever this may lead and I'm sure like all of you, you never even thought you would travel this highway!! Thanks for posting and I look forward to hearing from any of you that can help me out. Linda
You asked if I had pain...Linda I need to be perfectly honest with you...I have unbearable pain. I too, sometimes sit there and cry. For 12 years since my dx, pain has been my constant companion. Does everyone have pain...no. But a higher percentage than is publicly reported, DO. The pain is often "undertreated." I am one of the lucky ones; I have doctors that LISTEN and treat me accordingly. Does my pain disappear with medication...NO, but at least it makes me it more tolerable, so I can live a better quality of life. I refused to sit down and give up.
MS should have found a weaker person to attack, because I intend on fighting this ugly disease, until I no longer have any breath within me. It will NOT defeat me or define who I am.
Heather
MS should have found a weaker person to attack, because I intend on fighting this ugly disease, until I no longer have any breath within me. It will NOT defeat me or define who I am.
Heather
Please don't focus on the fact that my journey is a long one. That may not be the case for you. I just wanted you to understand that you yourself knows that there is something wrong and you need to keep looking to get answers. There are just some docs out there who are either too lazy to find out or just don't know and find it easier to rule you "nuts".
I do get marathon feeling legs but mine tend to do what I call my wonky dance. They shake really bad and go all over the place, and they also get very weak and heavy. I also get shooting pains that come and go and cramping. I also have other symptoms that come and go. The fatigue I find is the worst I have ever gone through.
Just keep fighting to get answers and as Jl Jo said you are not alone.
Moki
I do get marathon feeling legs but mine tend to do what I call my wonky dance. They shake really bad and go all over the place, and they also get very weak and heavy. I also get shooting pains that come and go and cramping. I also have other symptoms that come and go. The fatigue I find is the worst I have ever gone through.
Just keep fighting to get answers and as Jl Jo said you are not alone.
Moki
Linda,
We all have pain; again to varying degrees but I think across the board, that is one symptom we all have. For some it is constant, for others intermittent. For me, my limbs feel like dead weights and I have to drag them around. I get deep chest pains that causes me to breath shallow because a deep breath is excruciating. I get on and off shooting ear pain, eye pain and electrical sensations along my spine and through my arms and legs.
Add to that migraines and an additonal head and face pain (feels like I've been in a boxing match) and all over muscle fatigue.
Linda, we all cry, trust me you are not alone.
We all have pain; again to varying degrees but I think across the board, that is one symptom we all have. For some it is constant, for others intermittent. For me, my limbs feel like dead weights and I have to drag them around. I get deep chest pains that causes me to breath shallow because a deep breath is excruciating. I get on and off shooting ear pain, eye pain and electrical sensations along my spine and through my arms and legs.
Add to that migraines and an additonal head and face pain (feels like I've been in a boxing match) and all over muscle fatigue.
Linda, we all cry, trust me you are not alone.
Thank you so much for responding, I have had other "brain farts" that I thought were too embarrassing to mention, I thought I was just going "nuts"!! I do agree w/ Jo that I shouldn't tell the dr. tomorrow what I think is the problem, for the simple fact that I feel he is going to get a bit cranky if he thinks I am self diagnosing myself. Do you have pain? The pain is what is driving me crazy and bringing me to tears at times and my poor husband doesn't know what to do for me. Linda
I have been diagnosed with MS for 12 years. Your symptoms mirror so many of my own. Does this mean you have MS...well I hope not, but it DOES tell even laypeople like myself; that you definitely are having neurological difficulties.
One day I stood in front of the mirror and forgot how to put my hair in a ponytail. I just stood there. Bewildered. I knew what I wanted to do, but did not know how to do it. One day I was in a parking lot and needed to back out of the space. I could not for the life of me, figure out what i was suppose to do to back out. These episodes, thankfully; only lasted a minute or so.
When I reported these kinds of things to my Neuro, an MRI was immediately ordered. Not only of the brain, but of the spinal cord, with and without contrast dye. Result, 7 lesions in the brain and one large lesion in the spinal cord.
Keep a diary of EVERYTHING and I mean EVERYTHING, no matter how strange the symptom may be; to give to your doctor. I didn't do this when I was going through my "diagnosis" period. Now I know that I should have done it.
When you tell your family doctor what you are experiencing, he/she should set you up with a Neurologist ASAP. I know from much experience that your symptoms ARE neurological, in nature.
Don't give up....and please, keep us posted. I want to hear what you PCP tells you and what he suugests. If he doesn't say "Neuro," you need to TELL him that is who you need to see.
Best Wishes, Heather
One day I stood in front of the mirror and forgot how to put my hair in a ponytail. I just stood there. Bewildered. I knew what I wanted to do, but did not know how to do it. One day I was in a parking lot and needed to back out of the space. I could not for the life of me, figure out what i was suppose to do to back out. These episodes, thankfully; only lasted a minute or so.
When I reported these kinds of things to my Neuro, an MRI was immediately ordered. Not only of the brain, but of the spinal cord, with and without contrast dye. Result, 7 lesions in the brain and one large lesion in the spinal cord.
Keep a diary of EVERYTHING and I mean EVERYTHING, no matter how strange the symptom may be; to give to your doctor. I didn't do this when I was going through my "diagnosis" period. Now I know that I should have done it.
When you tell your family doctor what you are experiencing, he/she should set you up with a Neurologist ASAP. I know from much experience that your symptoms ARE neurological, in nature.
Don't give up....and please, keep us posted. I want to hear what you PCP tells you and what he suugests. If he doesn't say "Neuro," you need to TELL him that is who you need to see.
Best Wishes, Heather
Hi Linda,
I'm so sorry you're having a rough go, but rest assured we all know to differing degrees what you are going through. To second everyone here; keep a timeline of your symptoms, even things you don't think could be related to one another.
Tell your Dr. everything in as much detail as possible. What I will say though and others may disagree is to NOT tell your Dr. what you suspect it may be.
Many Doctors, Neuro's especially ones who are seeing you for the first time and don't know you personally, may jump to the conclusion that you've psyched yourself into thinking you have one disease or another if you tell them that's what you think you have. Their initail response may be to shut you down and label you as a *nut* (a phrase we're so fond of) which is the last thing you want.
So be open when talking to your Dr but don't suggest to them how to do their job...
Other than that, good luck!
Jo
I'm so sorry you're having a rough go, but rest assured we all know to differing degrees what you are going through. To second everyone here; keep a timeline of your symptoms, even things you don't think could be related to one another.
Tell your Dr. everything in as much detail as possible. What I will say though and others may disagree is to NOT tell your Dr. what you suspect it may be.
Many Doctors, Neuro's especially ones who are seeing you for the first time and don't know you personally, may jump to the conclusion that you've psyched yourself into thinking you have one disease or another if you tell them that's what you think you have. Their initail response may be to shut you down and label you as a *nut* (a phrase we're so fond of) which is the last thing you want.
So be open when talking to your Dr but don't suggest to them how to do their job...
Other than that, good luck!
Jo
Thank you for responding to my post, I am anxiously awaiting for tomorrow. I am in so much pain w/ my legs that I wish I could go today to the dr. I am a bit discouraged to read that you have been having problems for 5 years and you still aren't diagnosed??? That makes me wonder if I will be sitting here 5 years from now writing about the same problems and not knowing what is wrong with me!!! Do you feel like you have been running a marathon w/ your legs? That's how mine feel and then they seem like they are in a constant cramping state, they don't uncramp for about 45 minutes, then they'll feel somewhat ok for awhile and then a cramp /pain comes again. I am already so sick of this, to think I might have years ahead of me w/ no diagnoses scares me! Thanks again, Linda
Hi Linda,
Sorry to hear your having such a rough time of it. A couple of things and I could be way off the mark. Your memory recall problem, long term memory is in an area that is not typical of MS.
About 40% of the people with MS have cognitive issues at some point. They are generally fairly minor but can be severe in some individuals. Memory loss in MS is generally not memory loss but the inability to retrieve recent events. As MS causes damage the connections that route signals get messed up. Your brain says send me the info on such and such and either it never gets the request or you never receive the response because the connections were bad. Pretty simple view of it but thats basically what goes on. But for some reason it normally does effect long term memories. Most MS patients can recall learnings from childhood quite easily, they can remember places they lived years ago but have trouble recalling where they lived 5 years ago or what they had for lunch two days ago.
The vibrations you speak of again don't seem typical of MS. I'm sure something is going on, the real question is what. Keep pushing for answers, don't give up and don't allow them to regulate you to 6 month follow-ups to see if there has been any changes.
I keep my neuro appointments about 3 months apart, but at times I think it is way to long between appointments. Every time I go in he orders more tests so why should I wait 3-4 months to have the next test done. I feel they should be done as soon as practical to find the answer.
Stay strong, play with the kids and don't overdue it!
Johnny
Sorry to hear your having such a rough time of it. A couple of things and I could be way off the mark. Your memory recall problem, long term memory is in an area that is not typical of MS.
About 40% of the people with MS have cognitive issues at some point. They are generally fairly minor but can be severe in some individuals. Memory loss in MS is generally not memory loss but the inability to retrieve recent events. As MS causes damage the connections that route signals get messed up. Your brain says send me the info on such and such and either it never gets the request or you never receive the response because the connections were bad. Pretty simple view of it but thats basically what goes on. But for some reason it normally does effect long term memories. Most MS patients can recall learnings from childhood quite easily, they can remember places they lived years ago but have trouble recalling where they lived 5 years ago or what they had for lunch two days ago.
The vibrations you speak of again don't seem typical of MS. I'm sure something is going on, the real question is what. Keep pushing for answers, don't give up and don't allow them to regulate you to 6 month follow-ups to see if there has been any changes.
I keep my neuro appointments about 3 months apart, but at times I think it is way to long between appointments. Every time I go in he orders more tests so why should I wait 3-4 months to have the next test done. I feel they should be done as soon as practical to find the answer.
Stay strong, play with the kids and don't overdue it!
Johnny
I am undiagnosed right now and have been going through symptoms for about 5 years now. SL and AussieRose are right. You need to find out what is going on. Don't give up. I have been to one neuro who is getting weanie roasted for being an idiot so now i'm looking for another.
Make a time line of your symptoms for you doctor. Don't leave anything out. All of your symptoms put together can help in getting a diagnosis. You are not nuts. I felt that way myself and even had one doctor tell me I should get a pysche assessment. I am nuts which I have no doubt of but that is not what is causing my problems. lol
You have something going on that needs to be checked out. I wish you the best and hope you don't let fear stop you from doing what needs to be done.
Good luck on Wednesday
Moki
Make a time line of your symptoms for you doctor. Don't leave anything out. All of your symptoms put together can help in getting a diagnosis. You are not nuts. I felt that way myself and even had one doctor tell me I should get a pysche assessment. I am nuts which I have no doubt of but that is not what is causing my problems. lol
You have something going on that needs to be checked out. I wish you the best and hope you don't let fear stop you from doing what needs to be done.
Good luck on Wednesday
Moki
Hi Linda,
Welcome to the forum. I have MS, and you must be scared because of symptoms you are finding similiar. What I can tell you is that even those on this forum who are un-dx'd, will be able to give you a lot of help, if not more than those w/new dx's. You do have something going on, and to 2nd AussyRose says, don't be afraid to pursue this.
Seems you are also afraid of telling the Dr everything that is going on, but you are going to have to do so. Believe me, having all these problems, regardless as to what it may be, will be far worse in the long run than someone's chart acknowledging what you are experiencing.
You don't have to tell them what you think it is, but being educated on your own will be helpful. There are a lot of mimics, as well as a lot of tests that would have to be run. I wish you all the best and hope you stick around, and let us know how you make out.
Hope you feel well soon,
SL
Welcome to the forum. I have MS, and you must be scared because of symptoms you are finding similiar. What I can tell you is that even those on this forum who are un-dx'd, will be able to give you a lot of help, if not more than those w/new dx's. You do have something going on, and to 2nd AussyRose says, don't be afraid to pursue this.
Seems you are also afraid of telling the Dr everything that is going on, but you are going to have to do so. Believe me, having all these problems, regardless as to what it may be, will be far worse in the long run than someone's chart acknowledging what you are experiencing.
You don't have to tell them what you think it is, but being educated on your own will be helpful. There are a lot of mimics, as well as a lot of tests that would have to be run. I wish you all the best and hope you stick around, and let us know how you make out.
Hope you feel well soon,
SL
Tell your Dr. EVERYTHING! You could let your doc fish around for awhile on his own but I promise it will take a long long time! You have to tell him everything if you have any hopes of figuring this out. If you are worried about what he thinks of you researching symptoms, tell him "I know I am not a doc, but I have researched my symptoms." and see what he says. Another reason you need to tell everything is so it IS in your charts. You want documentation to reference if the symptoms come back again...or differently.
I have had a couple arrogant doctors who said some things completely out of line because I told them what I thought was wrong with me (I thought I had hypothyroid:-), but it is still MY BODY. So, even though they have the education, I am the one that has to deal with this on a daily basis. I didn't tell my doc everything at first becasue a) it was embarassing and b) I didn't think my bladder, my eyesight, my teeth, and the pins and needles in my leg had anything to do with each other. Okay, so now I have been dealing with this since April of '06.
I am just saying if I could do it all over again...
Good luck on Wednesday, I really hope your doc is on top of his game.
I have had a couple arrogant doctors who said some things completely out of line because I told them what I thought was wrong with me (I thought I had hypothyroid:-), but it is still MY BODY. So, even though they have the education, I am the one that has to deal with this on a daily basis. I didn't tell my doc everything at first becasue a) it was embarassing and b) I didn't think my bladder, my eyesight, my teeth, and the pins and needles in my leg had anything to do with each other. Okay, so now I have been dealing with this since April of '06.
I am just saying if I could do it all over again...
Good luck on Wednesday, I really hope your doc is on top of his game.
Thanks so much for responding, I am just afraid that if I say everything that is going on it will be in my charts and come back to haunt me later on??!! And I have been reading up on MS on every site possible and I do believe that I have alot of the symptoms, but I was thinking that I should let the Dr. figure out what is wrong instead of me telling him what I "think" is wrong?? All I know is this...there is SOMETHING wrong because I didn't feel like this 3 weeks ago!!!
I don't have much experience with MS...I do know that it is different for everybody... however I do have recent experience in dealing with Drs. not listenening to me and giving me the run-around. So, my best advice to you is DON'T BE AFRAID to say what you are feeling or what you think it might be. There are, of course, blood tests and whatnot that doc will probably run first, but if you think it could be MS, you need to tell your Dr! I didn't even know what MS really was until my 5th referral (this is the run-around: Dentist -> Dr. -> Neuro -> Gyno ->another Neuro --who is the first who told me the symptoms could possibly be related and now finally MRI tomorrow) They miss things. They can't read minds, afterall...and we all know they have no idea what we are going through! I am just learning that I really need to be pro-active about my health care. There is nothing to be afraid of...and TRUST ME when I say that he has heard "nuts" before and you don't sound it.
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