Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum.  ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology  (Expert Forum)
 | 
More MS testing needed or not?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Post a Question Back to Forum
MedHelp Member's Question

More MS testing needed or not?

by Want to feel well!!!, Jul 04, 2007 12:00AM
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 “shock” feelings radiate throughout my body, sensitive to sounds…very “jumpy,” diarrhea, vomiting, short-term memory problems, constant forgetfulness, hard to recall words, reading can be difficult, on 2 occasions my right hand was shaking uncontrollably…each time for only about 30 seconds, itchy feelings/cannot be soothed by scratching, choke on my own spit at times.  I have had blood tests to rule out numerous illnesses.  I am scheduled to see a neurologist in a few weeks, but one neurologist told me there is no reason to do a spine scan or tap.  I am a happy person, I used to be a runner but I running became too difficult 4 years ago.  I love to cycle, but this year I have not been able to ride.  I'm not crazy nor am I a hypochondriac; I simply want to feel better!!!! Any advice would be greatly appreciated.   Thank you.
Member Comments (89)

by patsy10, Jul 04, 2007 12:00AM
To: Want to feel well
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.

by mike1105, Jul 04, 2007 12:00AM
LYME?

by loramae, Jul 04, 2007 12:00AM
To: Not well
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.

by Want to feel well!!!, Jul 04, 2007 12:00AM
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 “off” and it was oddly difficult for me.  The next day I was feeling overwhelmed with exhaustion and as it turned out, I never ran again.  After a few weeks of total exhaustion, I went to my doctor’s office and a Physician’s Assistant put me on an antidepressant, stating that women my age have a lot of changes happening in their bodies and this was “normal.”

Since then I have been experiencing symptoms on and off, each time they seem to worse, but this past spring thru the current date has been, by far, the worst.  

I have been cycling on and off since 2002, even riding in 3 or 4 century (100 miles) rides, but this summer I have been unable to ride.  I separated my shoulder a few years ago in a fall, and afraid to ride due to the head fog I am in and I might fall again.  

Whatever I have, I need to know so I can get treatment and get on with my life!  I feel like I am in limbo.

by mike1105, Jul 04, 2007 12:00AM
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.

by Want to feel well!!!, Jul 04, 2007 12:00AM
To: mike1105
Thank you for your comments.  Any insights are appreciated!  I am new to this sight and I was curious what your background is?

by Want to feel well!!!, Jul 04, 2007 12:00AM
To: mike1105
I asked about your background becasue I am trying to get all my duck in a row for my next Dr. visit.

by Want to feel well!!!, Jul 04, 2007 12:00AM
To: mike1105
My ability to type is failing me this afternoon!

by mike1105, Jul 04, 2007 12:00AM
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.

by Want to feel well!!!, Jul 04, 2007 12:00AM
To: mike1105
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…is that correct?

I was curious about your background because you seem so knowledgeable in all your postings.  I have a fear of dentists but have managed to find some really great ones, and I have a feeling you are one of the better ones.      

I will look further into Lyme disease before my neurologist appointment.  Having all the information I can is my goal so I can speak intelligently, give my input, and also know what the doctor is throwing out at me.

In the past I have been reluctant to discuss my symptoms with anyone, but recently I opened up to a friend of mine and explained what has been happening to me.  He said his x-wife had been diagnosed with Lyme disease and my symptoms were extremely similar to hers.  I told him that Lyme disease had been ruled out.  By nature so many people want to help friends/loved ones find answers, but so often those good intentions are shot down, which is why I tend to keep things quiet.  Now, in contrast, I have opened myself up to strangers, which seems to be much easier.  

Again, thank you for your input and I will do my research!

I have not failed. I've just found 10,000 ways that won't work.  -Thomas A. Edison