Have MS like symptoms but MRI showed no barin lesions

[JackieT]

First I want to tell you I have a twin sister who has MS. 7 1/2 years ago I lost the hearing in my right ear causing severe vertigo. I went to a specialist who put me on Prednisone and ordered an MRI and bloodwork. All tests came back clear. After a month I was tapered off the Prednisone and felt weak, nauseous, shaky, some muscle twitching, some burning sensations and at one point my throat felt a little swollen for a short period. All symptoms seemed to come and go and eventually went away completely, other than the hearing loss, which never came back. I am a runner and about a month ago I noticed I was having a hard time with my right leg while running - it felt clumsy and was unable to do what my left leg could. This progressively got a little worse for a few days and for the past 2 weeks has gradually improved each day, though it is still not where it use to be. I have also felt the following symptoms off and on : burning sensation in small areas on arms and legs, tightness in back, tight/weakness in upper part of legs(mostly in the back just below my butt), dizziness, poor memeory, a nervous nauseous stomach at nighttime at which time I have difficulty sleeping and usually my legs have the weak feeling at the same time. Everything is off and on and many times I feel nothing. I recently had an MRI of my brain which came back clear. Electric shock tests on my legs showed something "off" in my lower back for which phyical therapy has been reccommended. Not sure where I should go from here. What else should I be tested for? Could this be MS?

[momofCandP]

A related discussion, Can you have a clear MRI and still have MS? was started.

[RFox]

I've always been sensitive to the touch always. A pinch alway hurt a bit more than other people and a slap on the shoulders is sheer agony. Anyway, I started back in 89/90 I was 19/20  at the time. I began going to doctors I couldnt lose weight despite my workouts and I couldn't get prenant. I hurt all the time and it was as if I never slept. I'd wake up exhausted. I went to the on post doctors and the pretty much gave me motrin for everything and sent me on my way.  No one listened. THey did a ultrasound of my abd. and found the left kidney had pretty much stopped working. The blood tests all disputed that. I had a kidney resection at 24. They thought I was making a mountain out of a mole hill when I told them how much pain I was in. I ended up getting Demerol in the backside, since as she told me wasn't running downstairs for a morphine pump for a baby. I started in the mid 90s and early 2000s with eye floaties and lights. Eyes and face muscles twitch for no reason and last for several minutes sometimes. My left hand and arm will sometimes just no be as strong. I drop things all the time. My legs shake on their own, I'm terrified of stairs, I've fell down mine already 4 times this year with out the dogs help. Then I got a back injury and things have gotten MUCH worse sense. THe muscle spasms in my legs and lower back with a burning sensation that is off of the chart. Not to mention that I forget A LOT of things. I have things taped to my computer if its important and every calander and date book is filled. I walk with a cane now. I have weaking in my left side. Not that the right is much more stronger. I have a drop in my foot. That my neuro said was me playing with him. I don't play or fake my concerns about my body! He never listens to what I say to him and I have literally spent more time in the waiting room than with him. Questions, no mine are to silly or mundane for him to answer, I'm wasting his time since I have a kidney problem and that's what is causing everything. WRONG Again- I was actually there because i have issues going to the bathroom, I have to turn the water on to go and when I have to go #2 I cry because a hot searing needle like pain seers down BOTH of my legs.  He told me I excercised wrong. I've had MRIs that have shown nothing. Yet everythign I read and the nurses that I know and talk to really want me to have a full MS workup. Non of my MRIs have came back negative. Some iffy spots they say but not to worry. WHO them or me? Not happening on this planet.  I'm to the point now where I can't wallk long distances I cant lift anything over 10 pounds, my feet are like in an icebox 24/7 same with my hands. I've had the nerve test done on my leg and he retested a site 4 times and I have hyperflexation and just mumble under their breath about it and tell me to relax. I look away and that same thing happens or they tap off to the side where hes not hitting the tendon. Anyway sorry for the mighty long intro... When I go for this 2nd Opinion.. What do I do? Say> I'm on so many painkillers now I could open my own pharmacy and thats not what I want to do is stay on then. I asked my family doctor if there could be something more than Radiculopathy , she asked if my mri were back said they were clear but also decided to send me to another specialist. This is where I'm at right now. So could I really have MS and not no it or could be Fibro or CFS? I have really good days like i could run a marathon and then there are the days that I just wish really I had another mode of transportation~it takes it out of me to any walking, especially since my legs tend to sieze up and I can't move them for the life of me,. This is a whole new world to me. here recently as last year both legs are involved with the tingling cold, shootinh hot pins, though I have limited feeling only in the left leg. I asked my Neuro what it could be and he litterally said I don't know. Left and came back with an appointment in 3 months! There's bedside manner and caring for ya. I am SCARED out of my MIND at what it could be. SO Please Any suggestion on how to ask the new doctor questions would be greatly helpful. Should I take along a daily dairy on how I get around, pain cycles etc. I did it for the other guy and he handed them back to my husband he didn't even look at them. I've had 1 steroid shot in my back lasted 1 week, I was hospitalized and diagnosed with Vertigo. Then prior to that I had 2 Rhizottomys done. That only made it worse. I know there's stuff that I left out, there always is, it's my memory. Sorry
Thanks for reading this. Hope everyone has a good day:0)
Rhonda

[fish22]

I'm not a doctor but I think Lebers hereditary optic neuropathy(LHON), a Mitochondrial disease, can mimic MS?? Those symptoms sound familiar. This is not to say that this is the problem here. Good luck to all.

[KatieCK]

I have had investigations for MS since I was 32 (now 48). I have hyperreflexia of all my limbs (it used to be only my right side; absent abdominal reflexes (used to be reduced reflexes), sensations of cold inside my arms and legs, burning, tingling in arms and legs, pain behind my left eye that feels like pressure, vertigo with nausea, and extreme fatigue even after just waking up. I have had depression, loss of memory, poor concentration which is better when taking antidepressants. I was diagnosed with Myasthenia Gravis and later probable MS when the symptoms got worse. Electrical studies this year were consistent with MS but since my MRI was clear for the second time, MS was again ruled out. My eldest sister who died last year had MS. I also have a twin who does not have MS. She sometimes gets symptoms and yes, sometimes I do think it is sympathy symptoms but one never really knows. CSF studies years ago were normal but evoked potentials were also consistent with MS. It worries me that I remain undiagnosed when these bothering things continue. I guess I think I have MG and MS and feel it is something that I will have to come to at some stage. It is a relief to know, although I wish it weren't so, that   others go through the trauma of non-diagnosis. And no, I don't ingest much aspartane at all. Pity.

[Terrihoward]

I too was told that is is rarely hereditary but my dad has it. well i think he does. years ago his dr did an mri and said he had white spots which he thought were calcium deposits. he now has a pace maker and can't have more but our symptoms are the same. me and my dad got kicked by the same mule! either they are wrong about me or his hillbilly dr is wrong about him! i take weekly shots and i am doing better. better than my dad who got no help. so here's the thing...spots, no spots, if you have so much stuff going on that it interupts your daily life, see a neuro. if you don't like what he said, see another. your symptoms are very similar to mine but that only means something neurological is messing up. remember, dr's don't know everything sometimes they are way slow to diagnose. ask about  interferon therapy.

[bengalcats]

I have not been able to get on the other sight yet, have you? I keep trying thats why I am trying to post things other places. You asked a very good question here, I would love to know the answer.I know it takes some people 2 years to get a dx of ms.

[JackieT]

Have you ever posted on the Neurology website? I want to know how common it is for patients to have reoccurring symptoms and have nothing show up for years, but eventually be diagnosed. And, what the prognosis seems to be for people in this type of situation.

[bengalcats]

i have flair ups several times an year lasting days weeks or even months, no 2 flairups are the same its always a different set of things, the most worrysome for me is the tingling which i have had for over a month in my hands arms and legs plus i get weird short circuiting sensations in my brain, blurry vision ect, i have a whole host of things, i also have many times that i feel normal. i havent a clue as to what it is, i believe its MS and I am afraid of it thats why I do not want to see another DR.I am 45 yrs old and my problems are aournd 15 years or more now.i also get episodes of vaginal numbness, numness between my toes down my throat ect.please write me back

[JackieT]

How often do you have flareups? Do you mind me asking how old you are? Why are you afraid to see another doctor?

[JackieT]

12 YEARS!! That's unbelievable! Have you felt symptoms every day for 12 years or do they come and go?

[bengalcats]

no i do not have symptoms every day, i have flair ups of different things that come and go, but this last time i started getting headaches and more frequent tingling in my arms, hands and legs. I am very worried and wish I knew what was happening. I am afraid to see another DR.

[bengalcats]

I TOO JUST HAD THAT ELECTRICAL TEST ON MY BACK AND IT SAID I HAVE A MILD PINCHED NERVE AND WAS TOLD TO GO FOR THERAPY WHICH I DECLIONED, MY BACK DOESNT BOTHER ME.THE TEST WAS AWFUL, I HAD MY BACK, HAND AND LEG DONE, I DID ALOT OF SWEARING!

[bengalcats]

i HAVE HAD SYMPTOMS OF MS FOR AT LEAST 12 OR MORE YEARS WITH, TINGLING,IN HANDS AND FEET, VISION PROBLEMS, BOWEL PROBLEMS, MUSCLE AND JOINT PROBLEMS,VAGINAL NUMBNESS, NUMBNESS BETWEEN MY TOES, WEIRD FEELINGS IN MY HEAD, ELECTRICAL ZAPS ALONG MY SPINE ECT, TO MANY MORE TO NAME. i HAD 3 mri, 2 WERE NORMAL IN 1996 AND 1999, HAD ANOTHER ONE IN JAN 2006 BECAUSE i WAS HAVING BAD HEADACHES AND TINGLING IN MY HANDS AND FEET, THIS IS WHAT THE MRI SAID, I GOT A COPY OF THE REPORT FROM MY NEURO.
A VERY SMALL NUMBER OF PUNCTATE T-2 BRIGHT SIGNAL FOCI IN THE SUBCORTAL WHITE MATTER OF MY BRAIN, EVEN WITH ALL MY SYMPTOMS MY DR SAID NOT TO WORRY ABOUT THE SPOTS BECAUSE ALOT OF PEOPLE HAVE THEM, I CANT BELIEVE IT! I AM GOING BACK TO HIM AGAIN IN 2 WEEKS DEMANDING MORE TESTS, THERE HAS TO BE A REASON FOR MY PROBLEMS,EVERYTHING ELSE HAS BEEN RULED OUT LIKE LUPUS, LYME ECT!

[JackieT]

I have heard that it DOES run in families and is more prominent is areas further away from the equator. The MRI of my spine came back clear, but a doctor I spoke with said he has a friend who was experiencing symptoms for 4 years before something showed up on an MRI and she was diagnosed with MS. It's been almost 8 years since I lost the hearing in my ear, I would think SOMETHING would show up by now if it was MS. I am trying to get in to see a MS specialist at the University here(I am in Germany right now). Hopefully I will get in soon and see what he thinks.

[Aruba417]

Wanna know something really weird? My dad has had it for about 18 years. And 2 years ago, my uncle (on my MOM's side) got it. So now it's on BOTH sides of the family. The truth is, they don't really know for sure whether or not MS is hereditary. I was also having MS like symptoms for awhile, but my doctors diagnosed me with Anxiety/Panic disorder. Even though they DID find spots (didn't say "lesions") on my brain. My neurologist said that in most people, he'd shrug off those spots and say it was normal, but because of my family history, I am to see him for a follow-up in a few months. If nothing else on a new MRI has changed, he will be able to confidently say I don't have MS. BTW, my first MRI was about a year ago.

[JackieT]

She was experiencing numbness in her hands and face. Went for an MRI which did show lesions(this was 7 1/2 years ago). She just started taking Avonex a few months ago and is just starting to get adjusted to it. Overall she is doing well, but has had some deteriorations since having her second child 16 months ago - this is what made her decide to start taking  medication.

[Curls]

I have CFS and reading your description it doesn't sound like that good of a match.  If you want to learn more, a good association website is www.cfids.org.

I do remember seeing studies and conclusions that MS happens more in some areas (the north for instance) than in others, so maybe there's a location/environmental factor?

I have seen over the years that A PORTION of people react to aspartame badly (as well as msg can be a problem for some people).  In general switching diets around seems to help in a lot of the autoimmune cases at reducing symptoms.  

Good luck finding a diagnosis that fits well!

[NoAspartame]

I was experiencing symptoms (memory loss, tremendous confusion, very low energy) while just using 3 or so breathstrips a day.  I never thought to check the label!

When I had a LOT of symptoms, I was drinking one or two cans of pop a day, and maybe a yogurt... that amount was enough to hospitalize me... one time for a week.  While in the hospital, they gave me Diet Sprite.. and I got worse.  I finally asked that they release me before they killed me... having no idea at that time that aspartame was causing it.  All I knew is that I could barely stand long enough to use the bathroom.

NONE of the four doctors I tried asked me to journal my diet.

[sally456]

how was your sister diagnosed?? did she had lessions on your mris??

how is your sister doing?

[NoAspartame]

Sally,

Confusion, dizziness, crushing headaches, inability to comprehend what I'd read, tingling in the arms and legs, loss of energy, memory loss, and low blood pressure.  The stuff turned my mind into peanut brittle.  My blood pressure would go down to around 80/42 and I was so weak I could barely walk.

There are a lot of websites that claim aspartame is safe and that you shouldn't believe anything negative about it... that's BS... this stuff was NOT safe for me... and about thirty other people I know that I have convinced to quit ingesting it.  They reported a variety of problems that went away after they quit ingesting it.

It's important to read labels very carefully if you'd like to get this stuff completely out of your diet.  Doing this is safe... there's no withdrawal.  It's cheap... there's nobody to pay.  And you will see results in a short period of time... say a week or so... and things will start to improve.  I'm not asking anyone to do something quack-happy here.  If you use it, just quit it for a while and see if it was the problem... and this also doesn't stop you from seeking other medical assistance.  What's to lose by trying this?

[JackieT]

I am having an MRI done on my back this week to rule out lesions on my spine. 98% of the symptoms I have been feeling my twin has also felt - the major exception being the hearing loss that happened 7 1/2 years. She likes to say it is a "twin thing" and I am just feeling her symptoms. How much aspartame were you consuming? I definately chew a lot of gum and use splenda(I know splenda is actually made from sugar and is not aspartame) daily, but that it it.

[dana110]

I think MS is more prominate in some families, they say it is not but it sure seems funny to me that some families have alot more members that have it than others.

[sally456]

what exactly where your symptoms from the aspartyme???

I havent been using it  but still have symptoms.
At least i cut out the diet soda and yogurt. Still chew gum though, and i also cut out splenda....

I also have alot of the same symtpoms...burning, tingling, a little numbness, bladder problems, vision problems, some hearing loss..and dr's say i dont have ms...

[NoAspartame]

How much aspartame (Nutrasweet) do you consume in a day?

This might be a bit of a trick question because aspartame can be found in nearly 6,000 products.  Some of your symptoms are very close to what I experienced prior to ridding my diet of aspartame.  It's in almost all gum, diet soda, some yogurts, OTC medications, and even pocket-pack breath strips.

Try eliminating it from your diet for a while (say 30 days) and see if you feel a difference.  It couldn't hurt.  There's plenty of information out there to say that what I am saying isn't correct - that aspartame is 100% safe.  At one time I believed it, but now I certainly don't as it caused me problems for nearly 10 years.