More MS testing needed or not?

[Want to feel well!!!]

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.

[patsy10]

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.

[mike1105]

LYME?

[loramae]

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.

[Want to feel well!!!]

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.

[mike1105]

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.

[Want to feel well!!!]

Thank you for your comments.  Any insights are appreciated!  I am new to this sight and I was curious what your background is?

[Want to feel well!!!]

I asked about your background becasue I am trying to get all my duck in a row for my next Dr. visit.

[Want to feel well!!!]

My ability to type is failing me this afternoon!

[mike1105]

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.