Normal mri w progressive symptoms

[curious neuro patient]

I was referred to a neurologist in 2001 after experiencing tremor in both thumbs/hands, sudden onset of blurred vision in one eye, and balance problems.  Neuro exam found gait ataxia, tremor, left hand weakness, and optic neuritis. He ordered mri, veps, and emg to rule out MS or MG.  All tests came back normal. I declined LP.  DX: Essential tremor.

In 2002 routine trip to optometrist revealed a small blind spot in field of vision test.  He sent me back to neurologist.  An ocular MRI came back normal.  

In 2003 I had frequent falling episodes during pregnancy - after pregnancy I began seeing bright flashes of light at the edge of my field of vision, triggered by sound.  Neuro noted loss of sensation on shins in addition to previous symptoms.  No further testing was done, dx of essential tremor remained.

In 2006 went back to neuro again after another round of frequent falls, difficulty walking in extreme heat (100 plus temps), fatigue, cognitive issues and noticeable atrophy of left hand muscles. Neuro ordered cervical spine MRI, again normal. Dx of essential tremor remains.

In the past few months I've now had several episodes of difficulty w/bladder & bowel issues.  My question: my neuro won't dx MS with normal mri.

I know a small percentage of people have ms w/normal mris... but other doctors dismiss this.  I know ET can cause symptoms other than tremor, but atrophy and visual probs are not among them.

I would like a doctor to comment.

[cleanitmeanit]

Not a doctor but have been thru this with my husband and still waiting.  Has a lumbar puncture been performed(spinal tap) to show cells conducive of MS?  Also, has a neuro done an avoke potential eye test on you-this can also dx. MS.  

My husband has been ruled out as not having MS even though he exhibits all the MS symptoms and has more than 24 lesions on his brain.  I just watned to tell you of some other very important tests they can do for MS.  They should also do a genetic blood work-up on you.  Good luck.  

[jenny666]

A related discussion, MS was started.

[JLOSSRN]

did you ever consider sarcoidosis or neurosarcoidosis  and the other thing you need to consider is narcolepsy.  which can cause all of those symptoms just from a lack of sleep over a long period of time. I know  I just went trhough it.  Tremors weakness, falling down, dropping things. are consistent with cataplexy which is assiciated with narcolepsy. make an appointment with a sleep doctor and get an night time sleep study and a daytime study for narcolepsy. if that what you have alot of people actually do very well with the medications.  I have no more tremors and no more falling or weakness episodes.  I'm still very tired and have memory issues with cognative dysfuction but that because i'm still not getting enough sleep. the medicine worked for my cataplexy but not the narcolepsy and I cant take the daytime meds which are supposed to help with the daytime confusion and lethargy.

[mydogmira]

HELP!!  how do you get an MD to post and answer on this forum?
I am having all these  weird feelings since I gave birth 12 wks ago...I had a tingling feeling on the left side of my chin and I thought it was a reaction to Percocet...so I stopped taking it..well for the past 7 week I have all this pressure in my head..as if I were standing on my head and all the blood is rushing to it...I feel off balance at time with a bit of dizziness. I have been feeling the tingling in my chin again and a tightening/tingling on the right side of my neck. I went to an ENT who put me on Allergy meds and said we will start there...it's not working. I saw a neurologist who looked as confused as I was...he ordered an MRI and blood tests....thyroid level..lyme titer..ANA and ANCA...I  have a feeling they will all come back normal...I say this because before my pregnancy I was having  unexplained tremors and the tests came back normal..

if you have any suggestions..please please let me know..

[patsy10]

It sounds like he's doing the right thing.  Please keep us posted.

[patsy10]

I definitely think seeing the neuro again is good.  It still might not be MS though.  I had the exact same experience with the spinal tap as you....they got 5cc after over an hour.  It was horrible.  If you really have MS you should have abnormal MRI's this time.  Best of luck and keep us posted.

[numbinGA]

I went for 2nd opinion today, he said "I do not know exactly what is wrong", but it could be transverse mialitis.  He going to run a full spinal MRI and more blood work.  He says a virus can cause transverse mialitis.  So anyway I will keep you up to date on what he says.

[lisa wood]

I just got back from the doctors office and he did some of the neuro tests on me and said that I have MS. He does not care if my tests were negative in the past or if my tests continue to be negative. He said that I need to see my neurologist that I went to in 2004 (which I liked) and he hopes that he will treat me for MS. My doctor said that he wished he could treat me because he would. He also said that he could put me in the hospital and make them treat me but I told him I would rather not do that because my grandmothers 80th birthday party is this weekend and I would not miss that for the world. So I am going to go back through all of the tests again.

[RNRita]

Is it me or has this forum shut down?  I see no questions since August and no place to post a question.  Am I missing something?

[curious neuro patient]

I declined the LP several years ago, because I had gone through the gamut of mris, veps, nerve conduction, etc. all normal.  It seemed very invasive and I did not want to risk a side effect that might put me out of commission for a few days.  Since my signs and symptoms continue to worsen, it is something I would likely consider now.  I've had several more mris over the past few years... I will likely seek a second opinion and if an LP is suggested again, cooperate.

[lisa wood]

I have a doctor's appointment with my primary doctor in the morning so he can refer me to a neurologist so I can through the tests again but I refuse to get another spinal tap done because they had such a terrible time getting the spinal fluid out. They had me under an xray machine on a tilted table and it took them 45 min just to get 6cc out of me. They told me that they were not going to make me suffer any more and that 6cc was going to have to be enough. I have had very bad experiences with the spinal taps. I really like my primary doctor because he does not treat me as just another number-he sincerely cares about his patients. I will let you know how I make out.

[patsy10]

Somatosensory is evoked potentials of your entire body.  They put electrodes all over and shows the speed of impulses from your toes to your brain, literally everywhere. So if there is a problem anywhere it shows up.  I think your testing is too old and needs to be repeated.  I may have been tested once for epstein barr.  Don't remember results.  I've seen 6 neuro's including an MS specialist.  None think it's MS.  I would like to be tested for all kinds of viruses.  I've gotten the FMS/CFS diagnosis as well.  I've also gotten the "it's all in your head" diagnosis.  I occasionally have swollen lymph nodes.  Read my post above to "numb in GA".  It gives a brief history of my symptoms.  There is a girl who posts here called "plateletgal".  She knows a lot about CFS.  You may want to post on the pt. to pt. neuro forum and she may give you some insight.  I think you have way too much going on for it to be just CFS.

[lisa wood]

I have had the visual evoked potentials done once but that was nine years ago. The other 3 neurologists did the MRI's and spinal taps. What is somatasenory? I also cannot do the sobriety test. If I was pulled over a cop would think that I had been drinking because when I try to put one foot in front of the other my leg goes all over the place and I fall. I would like for once for a doctor to experience what we go through for 1 week and then they will understand that this is not in our head. How long have you had this? Also have you ever had the test for Epstein-Barr? I have the chronic type that caused the CFS but I still think that I have something else going on with me. Does anyone have swollen lymph nodes? Thank you all for your feedback.

[patsy10]

Yes, I still have numbness and tingling all over my body from my scalp to my feet.  I have heat, cold and burning sensations in different areas.  My muscles twitch from head to toe.  I have sore and downright painful spots all over my body.  Most of them stay in the same spot but I get new ones and they move around.  My arms and legs are weak and heavy.  I get weird rashes all over my body.  I will say the weakness is better than it was 2 years ago when this hit me for the second time in my life.  I had these same symptoms back in 1993 after a classic bullseye rash, actually I had 3 bullseyes.  Bullseye rashes are consitent with lyme.  I have never had a positive lyme test though.  I have responded to antibiotics both times and had improvement.  It took me 5 years to recover the first time.  It all hit again in 2005 after having surgery.  If the lyme test you had was the ELISA, the test is essentially useless.  You should have a western blot.  I am not saying you have lyme, just letting you know from my own experiences.  I really think you should have a herpes zoster titer drawn as well.  I have had every test known to man for MS.  All have come back negative.

[numbinGA]

Are you still numb?
What were/are your symptoms?

I had a Lyme test done and it was negative.  I did have shingles when I was 8 years old.  

[patsy10]

I clearly do not think you have fibromyalgia or CFS.  Or maybe you do but it's secondary to something bigger. Those are diagnoses they give you when they don't know.  I also don't think you need a psychiatrist.  Your symptoms are real.  I have many of them with all normal tests.  Arrogant doctors can't admit they don't know so they say it's all in your head.  I  think this is especially true at large, well-known health facilities.  I do think your symptoms sound like MS.  It could also be chronic, late-stage lyme disease.  Even if you were tested for it and the results were negative you could still have it.  Other tests for MS are somatosensory and visual evoked potentials.  Have you had these done?  They are supposedly very sensitive to lesions that don't show up on MRI.  I do think you should have full testing again.  I think testing should be every year as long as these symptoms are present.  I'm not a doctor just another victim of an undiagnosed neurolgic problem like you.

[lisa wood]

I have been suffering from neurological problems since 1998. I have had several MRI's, CAT Scans and 3 spinal taps. I have gone to 4 different neurologists and the first thing they say is MS when they take a look at me. They do all of the tests and the tests come back normal. I am told I am a gray case and that I am unique. The doctors seem to think that I have some type of demylanating disease but nothing ever shows up. I have had a vestibular test done and found out that I have vestibular problems. Upon exercise I feel very fatigued and my muscles become very rigid. I have tremors in the left arm and both legs. I have had stroke-like symptoms but MRI is negative. I also get the Bells Palsy and slurred speech in which my tongue deviates to the right side. I cannot do the finger to nose test on my left hand as my hand will start to shake uncontrollably. My symptoms first started out just with my legs and now they are continually getting worse. I have been diagnosed with CFS and Epstein-barr Virus. I also have been diagnosed with Fibromyalgia but after the stroke-like symptoms my condition is too acute for Fibromyalgia. I have had the head neurologist at John Hopkins Hospital say that I needed to see a psychiatrist because he thought that this was all in my head because he did not believe in Fibromyalgia. I am thinking about going back to a Neurologist and going through the tests. I have not been to one since 2004.  I am just afraid that I am going to go through all of the tests again and they will once again come back negative. I usually get an episode every 5-6 months but I am experiencing another episode only after 2 months of being in a wheelchair for 2 weeks. Is anyone else experiencing these same symptoms and was your diagnosis MS?
Thank you,
Lisa

[patsy10]

Im just not buying this diagnosis.  First off, did you have shingles???  A herpes zoster(shingles) titer should have been drawn to see if indeed it is shingles.  I think  you should have had a spinal tap right away. If there is a central nervous system infection in needs to be checked early on in the spinal fluid because it won't show up later.  The spinal fluid should have had multiple tests run on it including an  MS panel, herpes zoster, lyme etc...Lyme is also a possibility.  It causes numbness, bells palsy and it gets WORSE when you take steroids.  I question how competent your neuro is......I would seek a second opinion.  How can diagnose a zoster infection without running and titer?  I would get a second opinion.  I have gone almost exactly what you have except for the bells palsy and the high BP.  Two years later I still have no diagnosis.

[numbinGA]

I am 29, female in good health(was) except 60lbs overweight.

27 days ago I developed numbness in the tip of my two big toes and the tip of my tongue, I also had a backache.
Day 2 -- a little more numbness, and sinus and lymph node soreness
Day 3 -- numbness and soreness increased noticed tingling in hands and back pain increased
Day 6 -- all of toes numb, tingling hands, and all of tongue and roof of mouth numb, soreness in glands had decreased, back pain same, weaker than usual.
Day 10 -- developed bell's palsy on the left side of my face, numb tongue, most toes and part of foot numb, hands tingling, back pain same
Day 12 -- Went to ER diagnosed with Bell's palsy and other numbness and high blood presure.
Put me on steriod and norvasc for bp ----- numbness spread, weak, tired, and in pain

Day 14 -- saw neuro, put me on Valtrex saying that a dormant zoster virus had caused all of this numbness

After 7 days of steriods and other drugs my face is better, but everything else is worse. The steriods made me even weaker and more tired.

Day 27-- today -- some face and mouth numbness, back pain and numbness, hand tingling and numbness, abdomen numb, butt and rectum are numb, vaginal area numb, from the knee down on both legs are numb and my feet are really numb. Tiredness is better after getting off steriods, but I am still weaker than before all this happened.

I have trouble walking, climbing stairs, and I can't complete my normal everyday task of taking care of my one year old. Doc says give it 2 weeks if we have not missed something. MRI and CT were negative.  Doc says I have post viral numbness from a dormant shingles virus.??

Have you ever had this disease? disorder? And did you recover????

[Dawn29]

I have the same exact symptoms and had every test done. I finally had a sinus ct scan and learned that my sinuses were in pretty bad shape. This will cause all the other symptoms, including headaches, trembling, neck and muscle aches. You will at times feel like your equal librium is off and you are constantly feeling weak and tired and not as normal any more. All of those are anxiety caused by sinusitus. I have constant headaches and pressure in my head and ears. I am having sinus surgery soon to correct all that is going on...

[AnyaD]

Do you know how I got convinced I had MS? I went to see a neurologist just because I had a numb right thigh and the numbness lasted for 3 weeks. She said it could me MS and after my MRI showed a couple of non-enhanced lesions in my brain and spine, she had no doubt. I refused to believe and didn't want to start taking drugs because I wasn't sure. Then I read about L'hermitte's sign in this neurology forum and I called my doctor the same day and asked to start MS therapy. I brought my chin to the chest while I was sitting and reading about it and my right leg caught fire that lasted as long as I was holding my chin that way. I never read about this symptom anywhere and only after a long research I found out it's a very common symptom that MS patients aren't even aware of. I am so grateful to this forum.....Good luck to everyone !!!

[debAZ]

Hi all, I am shaking as I read some of these posts.
I have so many of the same symptoms numbness (all on left side) face, arm, leg, foot, hand. I have left sided shoulder pain, hip pain, leg pain, buttock pain, tenderness, and weakness. I cannot even lift a gallon of milk from the frig. I have had MRI of brain, neck, and low back ALL NEGATIVE I have had and continue to have blood work regularly checking for anything my GP can think of. I have seen an internal medicine Dr
Neuro surgeon, Orthopedic surgeon, neurologist, I have had a nerve conduction study, numerous EKG's- I have tried Lyrics, Celebrex, and many other nerve and inflammation drugs. I now have an ulcer and am not taking inflammation drugs in effort to heal my ulcer. I have finally started taking muscle relaxers that knock me out but do nothing for the pain (at least I can sleep) and vicodin. I am a teacher and if a student bumps me I am brought to tears, I work with children who have learning differences and diagnosed with PDD spectrum syndromes. I cannot let them see me cry, they think they have hurt me and feel badly for days. I now take two different antidepressants. I am only 37 years old! I have a graduate degree and love learning but I cannot think clearly enough to get through a continued ed class. I feel like I am loosing my mind, and my life. I do not know what to do. My GP said well you don’t have MS, great!! But what if I do? And if I do not, then what? I cannot continue to live this way, it has been over a year. I live in the Phoenix area if anyone knows a good MD in my area I would sure be grateful for the info.

[patsy10]

Another MRI of brain with and without Gad. contrast.  MRI of cervical spine with and without the contrast.  If these are normal then evoked potentials.  Spinal tap as a last resort.

[numbness and pain]

i have has ms symptoms for about 2 1/2 yrs now, my gen dr is now sending me to nuerologist in a
few wks had a mri done about 1yr ago about 6mths after have baby this was norman my pins in needles in my face and hand went away during pregnancy, i have not had very bad attacks but seem
to have continued pins and needles w no explantion of where they are coming from also have some dizziness but not all the time headaches no real loss of muscle control have ran into things at different times dont know if there can be different levels of ms mine doesnt seem to be to bad at this pt but would like to get a diagnosis before things get bad i have 5 children at home and need to be as well as i can, is there any other test i should asked for when i go to the neurologist in a few wks