I was here about the same time last year posting this:
Now it's happening again. What isn't in that linked post are the symptoms of partial numbness, tingling, and finger stiffness what went on to last over a week. I also believe I encountered the "MS hug" (hate that term btw, it's morbid, but I'm not certain what else I should call it. I hope it's not offensive.) or something similar. A year ago, I thought it was a panic attack, but after the second episode of all this and looking for answers, I don't think it was. It was that belt of tightness that gradually got so tight it felt like cramps, and now a year later, I have another encounter with something similar to an "MS hug".
As I said this is happening again, and this time it's worse. It started at work (I wasn't lifting anything heavy), and it started the same way: tingling in my arms, legs, back, and butt.. mostly localized to my left side AGAIN. The difference was I noticed this whole episode developed faster and instead of stiffness in my hand like last time, it was my entire left arm and leg. Within half an hour, I was so lethargic to the point of counting minutes until my shift ended. I'm still fatigued today, and that's with eight hours of sleep. That night I got the effects similar to the hug, this time tightness was lower on my torso and twisted my back into such knots I began cramping, all the while it felt like creepy crawlies all over the area. It really started to drive me insane.
I do admit that today I was researching a bit into MS, but it was more of putting terminology to my symptoms than, "Oh, I think I felt that way when.. blah blah blah." I know there are differential diagnoses from reading the sticky, but I'm still left with this overwhelming feeling of the pieces fitting together. Along with these two weird episodes, I've had bladder dysfunction for as long as I can remember (frequency, hesitancy, urgency). I've always been "hot-natured" as my family has called it. Everything is usually too hot. My showers are taken in a temperature just above lukewarm because hotter than that makes me dizzy. I can't sleep under the covers, and sadly I can't fall asleep against my husband's body. It's just too much. After the first episode, I had an MRI and nerve test. Nerve test was fine and MRI showed one nonspecific lesion in the brain (which I know could be nothing at all). In two weeks, I'll have a contrast MRI for this current episode.
Maybe I sound defensive, but that's because I feel horribly alone when I know some family doesn't believe my symptoms. The first time this happened it was at my in-laws while my husband was deployed. I'm sure they all thought I was crazy. I know my husband thought I was (and still am) a hypochondriac, he said so. It was just so embarrassing to make this big scene (I believe I read in another thread about someone going to the ER thinking they had a stroke when it was MS, I totally did the same thing) with nothing to show for it but apparently over-analyzing my foot falling asleep or something. Even with this second episode, I felt vindicated. Almost. My husband literally doesn't respond to anything I say about it. I say something. His response is pure silence without any acknowledgment that I had even opened my mouth to address him.
Maybe it's MS, maybe it's not. No one knows right now, but I'm having a hard time centering on anything else. I have great respect for everyone here, because if this isn't MS I can't truly imagine how insane this must drive you. I'm not necessarily asking for the usual "What do you think?" reply, but if you want to add anything feel free. I guess I'm just lonely and everyone thinks I'm insane. It's frustrating, and I bet a lot of you guys have went through the same thing. I just want someone to take me seriously because this is happening and it's not pleasant. MS may not be happening, but something is.
What did you do if/when no one believed you? I feel like if I still push for the MS route, or any route, people will start to think I'm crazy. Then I read all of your stories of sometimes years to diagnose, and I think, "Why shouldn't I push if my quality of life is reduced?"
Many MSers are accused of faking it or other innuendo. If you know in your heart that something is amiss, it does not matter what others might think, it is your right to be as aggressive as necessary to find the truth.
If you think it is MS, run the gauntlet of testing, but make sure you are working with a good doctor, a neurologist who specializes in MS. Be willing to listen if he tells you it is anxiety, or any other multitude of possibilities. Again, if in your heart you know something is happening, a good doctor will listen and try to help you.
Is the "journey" easy? No, but you are in good company. I was accused of being uncoordinated and haphazard as a teen, well DUH!, now I know why. To those who made bad comments, they did so out of not knowing. I have my life and they now know the truth. The past is but a blurred memory to me because I tend to erase the bad memories as much as I can.
What you are feeling now are emotions that most MSers have felt. Its all in your head! Yes, most MS lesions are in your head! sooooooo, when they tell you it is in your head, tell them you know it is (that is if you have MS). Until your diagnosis, stay tuned here and never give up. If you do indeed have MS, then do let us know that too.
You seem to be going through many difficulties. Someday, soon I hope, you will be able to look back at this as a blurred memory. Remember your journey and blaze a good trail for those who will follow. With all MSers working together, we can pave the path for those who follow us and maybe their journey will be easier. I will add you to my prayers. I hope that your journey will get smoother!
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Hi. Sounds like you are definately angry. Are you? Why? And more importantly what are you doing about it? Yes, its true, that some people who do not have a diagnosis are looked at strangely, as if there should be an explanation for these "unexplained" symtoms- and people who do not understand it obviously dont know how to react or what to say/ think....
But let me ask you this; are you still seeing the same doctor? If you are, then is it time to move onto another one??...if a year later, you still dont have answers, then you definately need to be your own advocate and push for answers. That usually means changing doctors. However, you also stated that you are going to have a new MRi in two weeks. Thats a start. Lesions can show up the day after your last MRI, which is why, until you are dx- a good doc will usually repeat the tests every 6 months. Things can change every week on your tests. What other tests have you had? Has anyone done a VEP or EMG or EEG or LP? These are all tests which take you a step closer to knowing what is going on...
as far as the MS hug goes: it doesnt happen to everyone- The MS hug, is a quick tighening of the upper chest, usually around the heart. ITs always above the waist- and its a binding feeling. It can knock the wind out of you- but only briefly, and only once or twice. Most MSers experience it a few times in an hour, and then they dont experience it again for days/weeks/ months...you could be experiencing it- or you could be having something totally unrelated. It does not give you the creepy crawlies, nor does it happen Lower, like you described happened at night.
the last issue you mentioned of the whole thing that happened at work. Have you had any back injuries? Cervical in particular, can cause the numbness, tingling that you describe. Is your upcoming MRI going to include the Cspine? You should request it...
Your husband, not knowing what to say, or how to support you in this, isnt all that uncommon. It might not be that he doesnt believe you or thinks you are crazy. He might be scared. Many men do not know how to react to these unexplained things, and he might be thinking the worst! Hence he is saying little. Try to cut him some slack until you have your tests...and more importantly, try not to talk about your symtoms right now. Give him facts "they are doing this test, or that test" "the doctor said that the results showed THIS", but try not to overwhelm him with the MAYBEs in life.
I also want to address your final comment: "Why shouldn't I push if my quality of life is reduced?" Who says your quality of life is reduced? Is it?? Do you still work? Take care of your family? What makes your life any different then it was 2 years ago? I have had MS for many years now...I am doing higher education (grad school) I work a very meaningful job 50+ hours a week, I have 3 kids..a husband- we live normal lives. Next week, Im traveling for my once a year vacation, this time to St Lucia. Having MS doesnt reduce the quality of my life. It simply tells me when to slow down and get more rest. Its an autoimmune disease but its not fatal. It slows me down at times, even gives me balance issues and pain- but it doesnt change who I am!
You sound both frustrated (understandable) and angry. The anger only you can do something about; the frustration, well, having this upcoming test might help....if not, you ARE going to have to be your own advocate and push for answers. Its unfortunate, but youre not alone- others have gone thru it. And, we have all survived. But, the big thing you have to understand is that there is an answer out there...and if that answer is MS, then consider yourself lucky. There are so many worse things to have to deal with. The biggest tip I can give you is take things one day at a time and do not focus on the BAD days, instead really be grateful for the good ones! As a healthy MSer, I experience less then a week of bad days, really REALLY bad days a year. The rest of the days are days when I try to be grateful. You dont even know if its MS or not, and although you have some very nurological sounding symtoms, have they ruled out Lymes or pinched nerves, or disc issues?? All of these things present much like MS. Once you have this MRI, start pushing for what else could be going on...and make sure you get a copy of your films before you leave the place that does them. Ask the doctor for a copy of the report when you see him. Something tells me, youll be going for a second opinion somewhere and youll be glad you kept copies of these tests.
i wish you nothing but the very best. I know you feel alone- but you arent. I know you are scared, but honestly- this isnt something to be that afraid of. Its not life threatening. I know that your husband isnt doing exactly what you want him to do (but do they ever??) This place, this board, is a great place to vent this all out because many of us have been exactly where you are and we will hold your virtual hand to help you get thru this.....but in the end, pushing for that answer is UP TO YOU. Remember, anxiety is your worst enemy- it will bring on health problems that you never experienced before, so try really hard to take a few minutes out of each week to have "me time'. And if you arent already doing some sort of exercise, now is the time to start. Spring is on its way. Start walking around the block or start a exercise program in your living room. Its amazing how just spending a few minutes each day on YOU reduces stress and helps you cope better. I really hope you have a great day today. Let us know how youre doing, ok??
Let's assume for an instant that you do have all your tests, and everything shows clear, and you still feel bad, you're not crazy, you might have anxiety.
This DOESN'T MEAN YOU'RE CRAZY and faking or imagining it all, you do have a medical condition that needs to be treated, sometimes even with medication.
So, again, you're not crazy and you do feel bad.
One step back, from a person that is experiencing the same doubt fear and anger than you: Take all the tests needed, and look for a second and a third opinion if needed too.
Search for an MS expert if you can, that can, and probably will give you the definitive light on your case.
If you are clear in all tests, have two or three different opinions telling you don't have MS, then you probably really don't have it, then again this doesn't qualify you as a crazy person.
It's quite probable too that if you take the necessary tests, and examinations, you'll find out if indeed is MS what is happening to you , or if it's another condition, there are A LOT of medial condition that could resemble the MS symptoms, and when you do that, you'll get the proper treatment.
Nikki knows a lot, I'm even back to the board for some advice, in an other post that is, be free to read it, and see that you're not the only "crazy" people in here.
Thank you all so much. I guess the people with whom I have non-medical relationships with will have to agree to disagree, and unless I'm seriously dehibilitated I should keep mostly quiet. It's hard though when things like this are so.. STRANGE! I guess I'm just scientifically inclined and anything like this is interesting to me, and I suspect everyone else to find it interesting. I just eat it up in an educational sense.
Thank you too, MSNik. I have had the EMG and regular MRI when I had these same symptoms last year. EMG was normal, and the MRI showed a nonspecific lesion. The neuro (in St Louis) I saw last year actually told me to come back in six months for another MRI, but I was getting ready for a move from St. Louis to Alaska so I didn't have time, and after all of the fuss I tried to forget the whole event. The doctor I'm seeing now ordered a full (I believe) MRI with contrast. He told me he ordered for a full brain and spine. I'll make sure to double check for Cspine when I get the call-back about scheduling the MRI, but no back injuries that I know of. I haven't had a VEP or LP, but my eyes weren't really affected last year or this time. It just felt.. weird around my eyes, like a feeling of going cross-eyed when I wasn't, and I'm assuming no LP until after MRI results if needed.
And my husband, yeah this time I only mentioned tests in the least detail. I guess he really doesn't know what to say. I guess there isn't anything he can say really. I'm not really mad at him personally, just frustrated with this whole situation in general. He was nice enough to rub my back though! So I'd say he's pretty awesome.
And I guess I really didn't know how to phrase the last comment. I'm sure you know all too well with your schedule you stated, fatigue and a busy day just do not mix, and I commend you. I'm just really not used to it, because I take medication for ADHD. Thank you for all your suggestions and support. All of you are truly great. I'll definitely take all this with me when the MRI and results are here in about three weeks.
Just a comment on husbands - someone told me this and it made sense to me.
Most women like their husbands to be protective, and so they are (more often than not). Men in this role like to feel that they can fix everything ... cars, leaky pipes, squeeky doors. LOL......... unrealistically it includes their wives' health problems.
My husband is aware that he can't fix me, therefore he tries to deny it away. I assumed that he really believes what he is saying, he doesn't. I can help him by not 'rminding' him of problems he needs to deny because he can't fix it.
I can report it worked. Less defensive comments, more support.
I am going through this also and I feel like I am crazy, my first doc said its menopause then when I went back said it was tmj. I went to another doc he said right off the bat it sounds like ms but my mri came back fine nothing on the brain. I feel like he thinks I'm crazy too! This was just last week so I still have to go back and tell hm I really feel like this is ms.. Dont give up.
"all the while it felt like creepy crawlies all over the area. It really started to drive me insane."
I think I know what you are feeling. I do not get the "hug", I have no tightness or squeezing feeling. But I do get what I get a "flutter" or an electrical zap. It could be described as a crawly feeling I suppose. I get it down my lower spine, my left ankle and heel and some other areas. It can be very distracting and annoying. Its very difficult to describe. Almost like a muscle twitching oh so lightly but there is nothing to see moving, its all in the nerves.
Does this sound like you have?
I can also understand your frustration with your husband. I think he is also scared by it and what it means by the future so he sort of shuts it out. He has been really helpful with the injections. Not that he does them, but when I'm getting prepared to do it he checks on me but doesn't say much. I agree he wants to fix it and can't.
I say push. I have been to the doctors several times with different complaints of short term memory loss, lack of concentration, joint pain, neck pain, chest pain,etc and they all looked at me like I was crazy or searching for drugs(we have a lot of those around here) and also being 33 they didn't believe that I could actually have joint pain. I read on Lymes and went myself to get tested being the doctors never thought of that idea and I was positive. I have been suffering with this mess for years and was looked at like a joke and honestly these doctors around here still don't look at it like its serious. I have known within myself for a long time something was wrong with me because I was physically and mentally declining, even my family treated me like I was a hypochondriac but if you have known a change in your body go with your instinct because you know you!! PUSH THEM!
I too have had the blood work, ANA testing, MRI's with and without contrast, x-rays,EEG, EKG, neurological testing, memory tests, eye exams, etc... The neuro I saw said it may be MS, but my MRI was negative. So were most of my other tests. I had a very specialized test where they put warm and cold air into my ears and checked my eye movements. showed my left periphreal equilibrium functions at 10%. He was shocked to see my right ear is working double time. He also said my memory tests showed I have acute onset of adult ADD. Hence, explaining my concentration and inability to find the right words. I haven't seen him since! My in office neuro tests were not all okay. when he had me close my eyes and march in place with my arms out, I started in the middle of the room and opened my eyes to standing on the opposite side of the room and facing a different wall. I honestly thought I was marching in place. It scared the heck out of my boyfriend!
My family doctor DOES NOT AGREE with the ADD dx. I have NEVER had any symptom that would suggest it. I finally saw a Rheumatologist who dx Fibro. My family doc isn't totally convinced he is right either. We just keep waiting. I do completely trust my family doc. He has said, one day I will walk in and say something that will make him go AH HA. I now know exactly what the problem is. He tests for the obvious first and continues until he has an answer. He has flat out said he KNOWS it's not all in my head or that I could possibly be depressed. He even said all my symptoms have been too consistent to not be real. I thank god everyday for seeing him. Here's a list of my symptoms in a 'nutshell':
numbness and tingling( could be all over, start at one end and go all over, or in one spot)
sudden right eye pain( been told I have floaters because I always see spots)
anxiety, especially with driving
electrical shock sensations( again just isolated or wide spread for a few minutes-a few days)
right side weakness and inability to use leg or arm( intermittent or days)
trembling in legs and/or arms and hands
blurry vision that will come and go at any time of day or night
lots of pain( muscular and/or bone)
muscle spasms( with slight visable twitching)
chest heaviness( feels like someone is squeezing the heck out of me)
memory issues( I have been told recently they are getting much worse)
lossing bladder control
Recently diagnosed also with severe IBS, diverticulosis, significant Acid Reflux, and Interstitial Cystitis( last March). Anyone ever told it was fibro and then diagnosed with MS?
emeadows - sounds like you have some vestibular loss. Those tests you had done check for function of your vestibular system. The marching in place with your eyes closed and wandering all of the room is a prime example of that. Your lack of concentration may be because your brain is working overtime to compensate for the loss of vestibular function.
I have a total loss in both ears, so I can relate. Along with the vestibular issues (with me) comes a fullness feeling in my head, my brain feels like it is sloshing around or like I am a bobblehead. Do you have problems reading while you are moving? With me, my neuro said the lesion on my vestibular nerve(s) is what caused the loss.
I also have a numb/painful left arm, an electrical zap that goes down my back, a "flutter" feeling in my left ankle, random numbness in my left leg and now what I think is optic neuritis.
I can not speak for the fibro v. MS diagnosis, I've only had the MS. I don't think either are easy to live with, but I don't know much about fibro.
Thank you for your responses. I agree, it may be time for a new neurologist. I am going to make a check in appt with my family doc and making a list this time. I will definitely be asking him about the vestibular issue and revisit the idea of repeat testing. It has been a little over a year now. Thank you WIlc for the info. I have often wondered if you are right and I could have both.