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More MS testing needed or not?

I was told my MRI brain scan shows no indication of MS.  I have not a spine scan nor spinal tap.  My fear is if I do have MS and it is not diagnosed my "condition" will get worse as it has over several years.  Some symptoms are: fatigue, insomnia, neck ache/stiffness, muscle twitching, hands are weak, numbness/tingles in fingers/toes, head feels fuzzy/face fells oddly numb, dropping things, shaky at times, headaches, eyes hurt (very dry at times), focusing my eyes can be difficult, increase in severity of symptoms on hot days, off balance/disorientation/vertigo, falling down due to lost balance, light
89 Responses
Avatar universal
I have most of what you describe except diarrhea and memory problems.  I've had numerous MRI's.... brain, c-spine, thoracic, lumbar.  I've had evoked potentials, spinal tap as well.  All tests have been normal.  I do think you need complete testing including c-spine MRI and evoked potentials.  Sometimes evoked potentials can show lesions that are not present on MRI's.  I don't think you have had enough testing to rule MS out.  I would go right to an MS specialist instead of wasting your time with general neuro's since you don't have a straight forward case of anything( just like me).  My only diagnoses are  fibro and chronic fatigue which I don't believe.  I think we have way too many symptoms for it to be those exclusively.  You also have symptoms of lyme disease.  If you have already been tested and it was negative, keep in mind the testing is very inacurate and difficult.  Best of luck to you in finding and answer.
Avatar universal
LYME?
Avatar universal
I feel for you, I too have ALL of your symptoms, had 2 brain MRI's,C,Thorasic,and Lumbar MRIs and no Lesions have been found. I have been to one Neuroligest who said nothing was wrong with me. I'm not going to give up, Its not that we want to have MS we just want to know that we are not CRAZY and what is happening, is happening for a reason.
Avatar universal
This is the first day I have been on the MedHelp website, and I am amazed at how many of the comments mirror my experiences and that there are people who can actually understand this medical  "adventure" I have been living through.  All the blood tests I have had to eliminate a long list of diseases (such as Lyme disease, anemia, rheumatoid disease etc.) are negative.

I was just in the ER last week because I could barely walk (my feet and legs felt like lead weights), my hands were not working, and I was vomiting.  The ER doctor was a condescending prig and said to me, "So, you're feeling a little run down?  We'll give you something to make you feel better."  As he walked away I asked what he was prescribing (but I already knew) and with his back to me he said, "An antidepressant."  I told him I wasn't depressed and he said, "Sounds like it to me," as he walked away.
  
I have an appointment with a neurologist in a few weeks, and I had prepared a list of symptoms for that visit.  Before going to the ER, my husband printed out the list to take along, hoping it might help.

The ER doctor did not even examine me (he sent in a medical student).  He did say he read my symptom list, but the best he could do was prescribe an antidepressant?  AND for all of his hard work he will receive payment from my insurance company?  What is wrong with this system??????  

Also, my primary physician had taken me off antidepressants because they did not help.

My fear is that if I do not get the proper diagnosis and on the right treatment there could be unnecessary damage happening to my body.

I had had an MRI in May, and I did speak with a neurologist while I was at the hospital last week, and he was the one who stated that there is no indication of MS, there were no tests that could be performed at the hospital to help with a diagnosis, and that I had to tough it out for the next few weeks until my neurologist appointment, where all the proper tests could be performed.

Through all of this, I am convinced that at some point I will get an answer and that I am not crazy!!!  

This all started the summer of 2001:  I was a healthy, happy, active woman and loved running, weight training, and cycling.  I was in the best shape of my life.  I ran 6 days a week and was also training for a half marathon.  One day I ran seven miles but I felt
Avatar universal
LYME disease often evades diagnosis by testing. I would research the Lyme websites and possibly see a Lyme specialist for an evaluation. Many if not most people with the disease report stories and symptoms similar to yours.
Avatar universal
Thank you for your comments.  Any insights are appreciated!  I am new to this sight and I was curious what your background is?
Avatar universal
I asked about your background becasue I am trying to get all my duck in a row for my next Dr. visit.
Avatar universal
My ability to type is failing me this afternoon!
Avatar universal
i am a retired dentist. Not an MD. I know a bit about Lyme Disease. Many cases are diagnosed based on symptoms only due to the unreliability of testing methods. If I were you I'd go to a Lyme SDisease Web site and read all you can, and in the absence of another SENSIBLE diagnosis that satisfies you I'd see a specialist in the disease. Most MDs are inexperienced with it nd therefore hesitiant to diagnose it never mind actually start treating it without a confirmation from a medically ac cepted test.
Avatar universal
Thank you so much for the information.  It is very kind of you to spend time helping others.  I have read so many postings today (my first day on this site and I seem to remember that you have been diagnosed with MS
Avatar universal
Lyme disease was probably ruled out by your doctor using the ELISA test.  The test is something like 40% accurate.  This test is the first screening tool for lyme.  Most physicians know little or nothing about lyme.  They order the ELISA, if it's negative, they tell the pt. they don't have lyme.  If the ELISA is positive then a confirmation test the western blot is ordered.  This too can be negative and a person can still have lyme.  Don't expect much from your neurologist regarding lyme.  He or she will probably tell you that you don't have it since your test was negative and will probably know very little about it anyway.  Depending on what state you live in, the doctors might say "there's no such thing as lyme disease" in your state.  If you live in an endemic area they might know something.  I'm not saying you have lyme but just letting you know so that if they say you don't have it based on a test and they can't find anything else wrong, you have another option to pursue.
Avatar universal
fortunately, i do not have MS--- I had a horrible time with an undiagonsoed condition called Upper Crossed Syndrome which is a postural problem a i got from being a dentist. I do, however, consider myself very well read and agree with the above post. Unless you go to a Lyme specialist, do not rule it out-especially since your symptoms seem to match well. Sometimes, antibiotics are prescribed based on symptoms only. Many people live thru hell before getting diagnosed and then it is too late (google NJ rock n roll legend Bill Chinnock). If your tests keep giving you no direction, seek a LYME specialist.
Avatar universal
Hi. Am brand new to this. Just stumbled onto it looking up symptoms. Ive had some wierd things happening and its scary. It started last fall and seemed mainly symptoms were bad near female cycle. Now it seems to last most of the month.Had MRI without contrast last year of brain and was normal. Tried physical therapy and chiro but its not getting better.My symptoms are severe muscle tightness in back of neck in shoulders and up back of head. This happens with or without pain. sometimes I get headaches but THE WORST is when its tight and I feel very woozy headed tight and my equilibrium is way off.Its so hard to explain sometimes it feels like the nerves up the back of my neck and into my head are irritated but not usually painful kinda like that sensation you get with a toothache withot the pain. I sometimes get a tightness in the facial muscles too. But like I said the worst is the equilibrium part. When it gets bad I just have to lay down. My doc is sending me for a cervical spine MRI and going to do an EEG. I am afraid to do  a brain MRI With contrast because I have such awful reactions to drugs and chemicals. I have to admit I am terrified of the idea of having MS. I do have fibromyalgia and my physical therapist said I may have  a bulging disc in my cervical area. I was looking up bulging discs when I came across this sight. Does anyone out there have any info or advice. Iwould greatly appreciate any info. Thanks a bunch. Sarze8
Avatar universal
Thinking back to the day I had my blood drawn for several tests, including the one for Lyme, I do remember the nurses in the drs office calling the lab to ask how to do a Lyme test.  I previously lived in Pennsylvania, spent a lot of time in the woods, so Lyme is a realistic possibility.  I just keep adding to my notes to discuss with the doctor.  If I cannot get any answers with the neurologist, my doctor has already said I will be referred to the Cleveland Clinic.

It's a beautiful day here on Ohio...hope you have the same where you are.  On the cooler days I can get out and enjoy myself a bit!
Avatar universal
One more thought.  If you want to go to CC to find out if you have MS or not then I would go directly to an MS specialist at The Mellen Center.  Don't waste time with general neuro's.  I've been there and done that too.  Not one of them had a clue.
Avatar universal
All this started when I lived in Pennsylvania, so if I would happen to have Lyme disease, I got it when I lived there.  

I'll see the neurologist and go from there.

Thanks
  

Avatar universal
again, I would visit a Lyme specialist if you get no answers from the Cleveland Clinic. I personally visited the MAyo In Rochester Minn and have concluded it is the best medical attention I ever received. But again, they are medical doctors, not Lyme specialists, and so you may come up against the same dead end.
Avatar universal
You are well read and give excellent advice/suggestions.
Avatar universal
How does one find a LLMD?  Whenever I even suggest I want to be tested for Lyme, I'm presented with great disapproval.
Avatar universal
I live in Ohio too.  You can go to the Cleveland Clinic if you want to but let me tell you, you will probably be disappointed with your visit.  If your tests don't show anything they will say "it's all in your head" or you will get a fibromyalgia, chronic fatigue diagnosis.  Trust me, been there, done that!!  Since my tests were negative, I was referred to a psychologist and for physical therapy. I have no mental health problems and have exercised all my life.  Of course I didn't do either.  It was ridiculous. If there's a question of lyme, they are the worst.  They know very little about lyme.  They told me "there's no such thing as lyme in Ohio".  I've seen numerous doctors over the past 2 years and my worst experiences so far were at Cleveland Clinic.  I saw an MS specialist there who agreed my symptoms were consistent with chronic lyme.  I brought pictures of all my weird rashes etc.. but when the test came back negative he said it's not lyme.  I don't know if it is or not.  Just be  prepared for this kind of experience.  Also, someone I know saw an ID doctor there with another family member.  She mentioned her lyme disease treatment etc.... and the ID said "there's no lyme in Ohio and I don't treat it".  My bad experiences were not even related to lyme issues. I never even mentioned lyme, my bullseye rashes etc...It would take way too long to tell you the issues I had there.
Avatar universal
Google lyme support groups.  Then click on no. 4.  I will tell you though that this site has been down the past couple of days. So if you can't get on today, try tomorrow or the next day. You can post under "seeking a doctor" and people will help you find someone in your area.  There are no lyme doctors where I live so I have to drive to PA.
Avatar universal
I have MS, and what you're describing does not remotely sound like MS.  Sounds more mechanical (Bone/muscle).  Hope you get better soon
Avatar universal
my mother has got ms and had it since she was 46 five years ago i was told i had chronic fatigue i am so tired most days i can only do smalls tasks but recently i have had constant pain in my left leg i am tripping over when i do to much my face gets a numb pain and i get very confused forget directions my mother suffered these same things before we found out about her ms i am worried is it possible i have ms what are the signs of ms the tiredness iget is terrible and comes on so quick i just collapse
Avatar universal
my mother has got ms and had it since she was 46 five years ago i was told i had chronic fatigue i am so tired most days i can only do smalls tasks but recently i have had constant pain in my left leg i am tripping over when i do to much my face gets a numb pain and i get very confused forget directions my mother suffered these same things before we found out about her ms i am worried is it possible i have ms what are the signs of ms the tiredness iget is terrible and comes on so quick i just collapse
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