Hi all. I've been a ghost on these boards for a while, trying to see what everyone else has gone through during their diagnosis. I've not had any resolution to what has been going on with me, but I see I am not alone in the long search for answers. I'm not sure where I should go from here, and wonder if anyone has any thoughts for me. I'm 31, female. Synopsis of symptoms: Seven years ago I had optic neuritis in my right eye with color swapping (red for green) and a large blind spot. I was stunned when the doctor (opthamologist or someone, can't remember) told me it might be MS. I immediately insisted on an MRI. Got a note from my GP that everything was normal. Off and on over the next few years I had tingling in my left arm, but it went away after a day or two, and I never saw the doctor. This past April, my left arm went all tingly, followed by my right after a few day. Then a week later, my right foot and lower leg went wonky. I went to my general practitioner who thought it was MS, and I went to a neurologist. I had a bevy of blood tests for everything under the sun, plus a head MRI, and a cervical MRI, both without contrast. All was normal. I had an EMG test, which was mostly normal (the doctor said I had something called "benign BMG disease" which might indicate MD, but that was ruled out with a blood test). The neurologist said "no MS" and that we'll wait and see. I got a second opinion to a MS neurologist who said it couldn't be ruled out and gave me a LP and EVP. Both were normal. Luckily, my arms are back to normal, but my right leg is still buzzing all the time, and feels like cold water is being poured down it, and is half-numb. Most of the time I handle it fine, but some days I'm limping around. I also have severe intolerance to heat - in July I was taken by ambulance to the ER - I got too hot, and I started vomiting, got severely dizzy, had heart tremors and my arms were paralyzed. Once I cooled down, I was fine. This type of reaction happens a lot (but never to that degree - usually just very nauseous and dizzy, with heavy legs). My current neurologist called me today and said that he didn't think it was MS, that I was just some "shade of normal", and to call back if something severe happens. I don't suppose that there's anything left to pursue. I am not happy with the fact my buzzing legs are now "normal", but I've hit a dead end. Any thoughts from those in the trenches?? Sorry this is so long...
Hello and welcome to our forum. I,m glad your here. I'm sorry your going through all of this. I'm not very smart on the medical side of it but I do know that just because your MRI shows no lesions does not mean they are not there. The optic neurotis you had a few years ago is one thing that alot of us with MS seem to get at one point or another.
I'm sure that Quix will be able to help you more when she gets back on line but until then I wish you the best.
You could be my twin!! By the way I LOVE your name! I have the same symptoms that you do except the Optic Neuritis. I am sorry you feel like a fraud but I want you to know that we all truly know what it feels like to constantly have symptoms that do not lead to a firm diagnosis. I also had an EMG that was abnormal and my next step is going to Shands to see a neuromuscular doctor to hopefully rule out MD. My neuro did the EMG himself and actually found the buzzing in my muscle in my foot. I felt like FINALLY there is proof I am buzzing and cannot stop and it is not my imagination! Unfortunately my neuro did exactly what it sounds like your neuro did - pass it off and belittle the way it was making me feel.
You are in good company here and I am glad you were able to speak up! Hang in there and keep looking for answers!
Thanks for your post! Sorry to hear that you're going through the same rollercoaster as myself. I actually liked my neurologist. To the end, he always said he believed I felt my symptoms, but thought they were just a variation of the norm. So at least I don't feel like no one was believing me, and my husband and family have been a real support. I just feel dumb complaining or mentioning to people my problems, and then everything turns up normal. :) Don't want people thinking I'm a hypochondriac or anything.
With my abnormal EMG, the doctor just ordered a simple blood test to rule out MD. I'll have to look it up in my notes (I can't remember squat) and let you know what it was. Keep cool!
Hi Fish and welcome! I second Carol in saying I'm sorry you are suffering. We are all in your boat. I'm just a patient also, but it sure sounds like you are on the front end of something and they just can't figure it out yet, or dont' have enough evidence they can put on paper. I'm here to tell ya, buzzing legs are not normal. I'm right there with ya.
That is wonderful that your family is supportive, that can make such a world of difference.
Thanks for the advice. I do need to get copies of my MRI's and the reports. My first neurologist did go over some frames with me on his computer, and to my layman's eyes and his professional ones, we did not see any white blobs anywhere. I don't have any information concerning what type of machine it was, or whether I should have had it done with contrast (does that matter much? ). I think for now, I'm just going to coast and see how it goes. My last neurologist definately gave me the impression that he is done with me for now. I'd feel weird asking for more expensive tests that turn out negative. I hate causing waves. :)
I guess you found the right place to share... i too have many of your symptoms, except the optic neuritis... you mentioned the mri, without contrast, i think it would be a good idea to see if you could get one with contrast...you certainly have many of the symptoms of MS, i really can't beleive that neuro said you are results are "shades of normal"... i think he must "shades of nuts".. `another neuro for the weenie roast!
Please hang in there, begin with a timeline of your symptoms. Keep good records and don't feel like you are causing waves... we all have been there.
Thank you so much you guys. You're making me feel SO much better. I was feeling rather embarassed and stupid to have gone to the doctor in the first place. I know these things aren't "normal", but with enough tests and doctors saying so, it's hard to understand. Thanks again!
Do you have a firm MS diagnosis? How long did it take to get there? I just had the VEP test last week. I was so sure that was going to show something, since it is the one symptom I have had that wasn't sensory and that doctors had actually _seen_ for themselves. But no, it showed normal as well. I wonder if I just heal really well?? I'm not sure exactly how the plaques themselves work - do they always scar? Can they heal themselves if the damage isn't too extreme? I don't know. I'm always genuinely shocked when the tests come back normal - I was so sure this time something would show up.
I did ask my first neuro about the difference between contrast and no contrast, and he was very dismissive of the need. The way I understand it, contrast shows the new lesions, right? Does MRI w/o contrast only show old scars, and nothing new? That's something I need to pursue, if so. Thanks!
Hi, formally - Welcome to the forum. You and I have spoken in passing, but I haven't responded to this first post. If you have been lurking - and your said your have, lol - then you know I went down for a short count and got wayyyyy behind. By the way, is this forum a good read? I know we have a lot of fun and I always wonder how many our out there reading our exploits. Well, are you ready for the "Quix Analysis?" ( I am so self-centered, sorry)
As you may have read that prior bout of ON puts you at high risk to develop MS. ON, a normal MRI and no other symptoms places youat just over a 40% chance of developing Clinically Definite MS within the 10 years following. Your MRI was normal, but I would like you to actually get a copy of the report to make sure they didn't find something and say it was probably normal, as happened to me. Wa the MRI of your brain or did they include the spine?
Fast forward to this spring when the leg went wonky and you also had some upper extremity symptoms. The neurologist wasn't looking all that hard for MS if he did the films without contrast. You were having new symptoms, I assume the MRI happened within a month of the wonkiness? If so, they would want to look for brand new lesions. If you have read my epic discourse on MRI, Lesions and Symptoms, you know that brand new lesions may well be invisible on regular MRI, because there is not enough damage to change the appearance of the brain/nerve tissue. But new lesions will be inflamed and engorged with dialated capillary vessels. The contrast is what is needed to visualize NEW lesions.
The LP was normal (can you get the full results of everything they sent?) and a EVP was normal. DRAT! that lingering evidence of the ON would have been nice, but oh well... (Not you, Oh Well, but you're welcome here too!) Does this mean you can't/don't have MS? Again, if you've been reading, it is less likely, but not at all out of the picture.
Uhh.... Shades of normal??? What a creative concept! No, having your leg buzz and tingle, being half-numb, sensation of cold water on it and sometimes causing a limp is not any of the shades of normal. And I have been deemed a brilliant colorist becasue of my quilting work - another topic. Frann nailed it. He didn't know waht the problem is so he blames you for not being "classically wired." HE is some "shade of nuts!"
With the intense sensations happening on your leg you need a SomatoSensory Evoked Potential and probably a Nerve Conduction Study. Someone should also be treating you with something for the neuropathic pain, like Neurontin or Lyrica.
You need a neurologist who specializes in MS, but is also willing to see people prediagnosis. Do you have the old doscumentation of the ON 7 years ago? Your old neurologist is "done with you", but only for the reason you are done with him! It has been 5 months or so since your MRI? Yes, Lynn is right you need repeat MRIs WITH CONTRAST of brain and spine. And those evoked potentials and nerve studies. You need to get all you medical records and test results. You probably know the drill.
Yeah, you hate causing waves, I understand that. My family is like that, "I don't want to bother the doctor." Well, shame on him for making you feel like a bother. I apologize for my profession. I guess it depends on how long you are willing to live with the wonkiness. And we haven't even discussed the heat intolerance! No, simple heat isn't supposed to land you oin the ER. I presume you always keep yourself well-hydrated knowing what the heat does? Does a hot shower or bath similarly make you weak?
How about fatigue? Or how about your mental function? Found yourself getting stupid recently, lol?
Stick with us. If you want to pass on medical follow up for now, I understand. There was a time when everything was coming back (falsely) normal and I was DONE with seeing doctors who couldn't find anything wrong. I guessed I just had vertigo and a leg that no longer worked. So goes life....
But, we will certainly help you through this. Personally, I would be surprised if an MRI doesn't pop up normal soon. I hope this helps. Oh.... and the "Shades of Normal" earns you automatic induction into Hypo Gamma Chrondria. It really is one of most creative ways of calling someone a crock that we have heard. I'm surprised he didn't tell you your "serum porcelain level" was elevated....
Yes,I have a confirmed DX of MS.
Actually its been cofirmed twice,back in 1998 and I disregarded it.Stupid me.Then again in December 2006.This last time was a long process of stupid neuro's and a magnitude of test.They kept saying that the lumbar surgeries that failed was causing my symptoms.I could of excepted that if my a** was on my shoulders.
My dx came with past DX,brain atrophy(past lesions)no wonder I forget everything,borderline abnormal veps,ssep,vng and LP with no O-bands but high IgG synthesis and myelin basic protein and so forth.I found a neuro who actually knew that it was progressing and symptoms were coming and going with advengence.
I've had 3 attacks since March.
I was gonna give up on the search and was tired of the defective neuro's but my GP,muscle Dr and back surgeon really kept pushing me,they were great,they said MS from day one.
Quix gave you great info,instead of wave create a sunami,get the answers you need.Your health has to come first.
T-lynn - Sorry to hear you've been having so many attacks; that's rough. I'm glad though, at least you have a diagnosis and sounds like a good team of doctors rooting for you. I can't say enough about that!
Quix - wow, thanks for the postand welcome! This post and my other are slowly merging, I think. :) But, to answer your questions, I had an MRI of the brain, and a second of the cervical spine, both without contrast, and both done within a month of the onset of the buzzies/heavies. Did you ever wake up in the morning and you'd been sleeping with your arms over your head all night, and now they feel just weird, pricky, cold and heavy? That's the feeling I have most of the time. :) Whoops - random analogy alert!
An MRI question: how long do new lesions show up with a contrasted MRI? You're right that it's been about 5 months now. Do most patients have MRI's of their entire spine?
My insurance sends me all the results of my lab tests, the LP results included. I just looked over them again, and nothing is flagged, everything is within their stated standard range. I could list them all, but it would take days....
I don't have the documentation of my past ON - the only thing I have from that episode is a hand-written note I received in the mail from my GP saying my MRI was normal. I can't even remember where I had that MRI done - I officially have no long-term memory, I'm afraid. Even to put together my timeline I was peppering my poor husband with questions. He's my historian. I can't say I've been especially fatigued, though I'm not chasing my kiddos around so much anymore, mostly because my foot feels like it's half dead. Any fatigue I have is probably more due to lack of exercise, as that has tailed off these last few months due to severe wonky-foot and leg disease. :)
I just filled out the paperwork to get my MRI films and reports, as well as the EMG/NCS study, and I'm printing out all my labs. Best to be organized for next time. Thanks for all your input - it's very very appreciated (plus you guys crack me up). :) Take care, all.
A new lesion shows up on contrasted MRI for 4 to 6 weeks. At that point it either scars or "heals", that is it remyelinates and resumes function. But, tests show that the healed area is still not as good as before at conducting signals. From the standpoint of function, this slight decrease in signal might not be noticed, but the effect over time of lots of downgraded nerves does show a cumulative effect.
As far as the proper work up when MS is supected - Yes, the brain and the entire spine (cervical and thoracic) are done by protocol. Some docs do prefer to do them step wise, but I don't see the sense in that. A certain percentage of MS patients ONLY have lesions in their spine and none ever seen in the brain. It's not the most common scenario, the opposite is more common. I'd have to look up exact numbers.
I'm curious. How long were you lurking over us and what made you jump in? I really hope there is a whole group of people out there reading in on us and learning stuff and getting some validation.
Also I misspoke in my post above to you. I would not be surprised if in the near future you get an ABnormal MRI. Sorry, lol, MS moment.
We'll talk tomorow. I usually sleep til noon. Do you need any pointers for the timeline or have you read that stuff? Also did you red the primer on "MRIs, Lesions and Symptoms"? Quix
Raises hand. I have been lurking for a few weeks. I have gotten loads of excellent information and advice here. I've been shy about posting my history but have been thinking about doing it soon. I have an appointment with a new GP at my doctor's office, the one I had usually been seeing left. I don't have a neuro currently but had a workup ten years ago when I first presented with strange sensations. I'll start a new thread with a timeline and background. I don't want to highjack this thread.
Hey, before I forget, glad you're feeling better! Don't tax yourself on account of me...take it easy!
I was hanging out on this board and some other MS sites probably since my negative MRI results came in (around May). I was just really discouraged that nothing was showing up, since I was _positive_ this time I'd get the answers. So I read through lots of threads of people having negative MRI's to see if many people did actually end up with MS or something different. I wouldn't say I was lurking every day, but maybe once a week, or twice a month, as different tests results came back and I wanted to compare notes. :) I decided to start posting because after all the tests came back negative, I was super discouraged and really felt like I had hit a dead end in terms of what to do next, so I was hoping someone here could suggest something I had missed and that I wasn't crazy for persuing things!
I did peruse the MRI post you bumped up recently - I need to spend more time reading it carefully, however. I read it late a few nights ago, and my brain was just not soaking too much in at the time. :) Plus, I believe I read somewhere that there is a thread out there with diagnosis stories - I need to find that one, as those really are helpful and encouraging!
I think all you guys do a great job of supporting everyone and supplying answers and thoughts to a great variety of questions, and I am sure I'm not the only one lurking around, too shy or whatever to join in the discussions.
I have also, like you, followed at the beginining what was being discussed here (I suspected ms for a few months and was finally dx in mid August this year). I am female of 32 and I have experienced all the symptoms (heat and no dx for optic neuritis however have some problems with left eye at the mo but optician says optic nerve looks healthy).
I can emagine the whole situation must be v frustrating as I found it some months ago. I do hope you get some answers soon. Perseverance is the key. I kept in touch (and still do) with all the docs, secretaries etc so they dont forget about me,... but it is hard during the working day.
Quix - thanks for bumping up the diagnosis stories. Your story is haunting. I'm glad you've finally gotten your dx and can start working on the problems with medication and therapy. Hopefully others will chime in with their stories as well.
Janey1 - I'm happy you got a diagnosis as well. It must be a relief to have that sorted out, even if the symptoms remain. If you haven't done so already, you should post your dx story on the thread Quix bumped up. It helpful seeing the first-hand stories of people who have been definitively diagnosed. Good luck.
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