HELP I am new and dont know what to do!

[deetee958]

Something is wrong with me.  My GP thinks I am crazy, and two neuro's later and I have yet to get a diagnosis. What should I do next?  Please, please give me your suggestions.

My problems started in Dec 09.  Awoke with excrutiating low back/glute spasm was given sterioids and muscle relaxers.  3 days later, mild foot drop, mild numbness lower shin area.  Absolutely, positively freaked out!  (OK now my doc is convinced I am crazy).  She sends me for lumbar mri shows nothing but deg. disc disease and sends me for PT.  Went to chiro who was able to relieve pain through trigger point therapy but muscle weakness in left leg remains.  Drop foot has gone away but leg feels wobbly.  Have regained some strength in calf and foot but not back to my normal.  I am SO anxiety ridden I cant even explain it.

First neuro did emg which showed some nerve loss in left lower leg.  He couldnt understand how I could have so much pain in glute/hip and only show nerve compromise in lower leg??  Said that maybe I did something to nerve without realizing it.   Sent me for hip mri -- showed nothing that he was looking for (sciatic nerve). Did show  a bone spur in sacral area and hip and showed a random sacral bone lesion,which was looked at by ortho oncologist who says it is benign. (they also did full body scan and abdominal ct--all neg).  

On to neuro #2 for second opinion.....looks at all my tests etc., says your neuro exam is normal and cant explain what is going on.  OMG once again I am petrified because I have no answers.  He says he will send me for an mri (brain) but that he doesnt suspect MS.  I will have that next week.  My latest symptoms aside from the weak left lower leg are internal trembling and muscle twitches which appear at night.  

Just an fyi:  I do take thyroid med which was recently increased last month because my tsh jumped a couple of numbers...no other meds except vit d and cal/mag.


OK all of this leads me to pure panic.  I feel fine except for the constant worrying about why my left leg doesnt feel as strong as my right.  I am not fatigued except for the fact that I dont sleep as well from worry.  
Please give me your opinions. Please let me know what you think I should do next. Should I look for yet another doctor?  I am supposed to go on a long weekend trip by plane in a couple weeks.  I dont know whether to cancel or go.  I think about this from the time I wake up until I finally fall asleep.  I feel so alone as I have no one to talk to about this that doesnt think I am nuts!

Thank you for listening.
DE

[Lulu54]

HI DE, you have some good folks talking you through this.  I noticed you asked what a good neuro exam should be like - here is a copy of what we have in our Health Page

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-RESOURCES-ON-THE-WWW/show/493?cid=36


"No MS diagnosis is ever made without a neurological examination. These sites tell you what is involved so you can relax, be prepared, and make the most of your time with the neurologist.


American Academy of Neurology is at www.aan.com/go/public

The Precise Neurological Exam for NYU Students
This contains links that explains in depth the 7 areas that should be covered in a neurological exam. It explains how each test should be preformed, and it also shows after each test what problems could occur, and what part of the body's system they could be linked to.
http://edinfo.med.nyu.edu/courseware/neurosurgery/
(Sunny)

The Neuro Exam
This is my favorite and goes through a very thorough exam.
www.neuroexam.com/content.php?p=2"


And another one I really like is at Temple University's website...

http://isc.temple.edu/neuroanatomy/lab/lesions/index.htm

their videos are at the far right side of the menu bar.

All of these sites will tell you what is normal, what is abnormal and what the results tell the neurologist.  If you go through a couple of these you will also see why it is impossible to cheat on a neuro exam and fake results - the doctor always knows because of how the body reacts.

good luck and stay in touch,

Lulu

[meg321]

I remember so clearly, and that is not normal for me now, but you sort of brought it back to me.  I was absolutely going nuts, crazy and making myself sicker, even suicidal.  I cried almost constantly.  I am still not sure why I was having so many problems at one time.  Some things were not even related to MS.   Also was on methodone for pain and couldnt get off it, so i signed up for rehab.  I do know now that that drug was a lot of my problem, especially the crying and depression.

Only my cardiologist was positive I had MS and a neuro he sent me to said I was too old.so it took me 6 more yrs to go to an MS specialist when my Primary Dr. saw my brain scan and saw the lesions.

I was mostly always in bed and so sick...I am not sure but i was so depressed...anyway, i was finally diagnosed March 24, 2009 and I originally went to MS spec on October 28, 2008.  It was actually quite fast after I found the right Dr at UCSF.

I am rambling..So please listen to others on here, it will get better for you.  And my real tool iis trying to remain positive....talking to someone who is objective will help a lot.

good luck Sweetie..

meg

[deetee958]

Thanks so much doc for your response.  I really think that I just need someone to talk to about all this.  It is a terrible feeling when there is so much to say or ask and no one on the receiving end.  I am so glad I found ths forum.

To answer a couple of your questions, I guess I am not sure what a thorough exam from a neuro would consist of.  They both looked in my eyes looked at my legs, checked my reflexes checked for feeling, numbness and compared both sides, watched me walk. The first one did and emg but told me that the nerve repairs itself about an inch a month and that I would most likely continue to see improvement in left leg. However he did say that sometimes you do not get it all back when the nerve is damaged for some reason.  In looking back I think I should have gone straight to the ER that very day it all began, Dec 3, 09 (I will never forget it!!).  The pain was SO intense that I should have done that.  I think I would be in a totally different place right now.  

Oh and to add one more thing .....  on Dec 25, I was carrying something to the fridge in the garage and when I stepped down onto the mat at the bottom of the step....yes you know where this is going........I turned my good ankle and went down!  I heard a pop and thought for sure that I had broken it.  After the initial shock of "what the **** now both legs??? that's all I need,"  I iced, it bruised a bit, swelled a bit, but I was able to put weight on it.  Husband and son (both who have had a couple sprained ankles had their MD hats on that day) told me that it was just a sprain so I didnt go for an xray.  To this day, I hope they were right. I am told that a sprain can bother you for quite a while. Hey,  I can only worry about one leg at a time!!!!!!

As far as my reflexes, both docs said they were good.  As far as my weakness, it is hard to explain.  I can still run (which I do on the treadmill everyday). I can still do stairs and the jumping....hummmmm....havent tried that but I suppose I could do it.  
There is documented weakness in left leg below knee.  I have been doing PT with this leg since Jan.  When I first went in my strength was measured at an 18 or 20. Yesterday I was at 42.  My good foot/leg even with the sprain is 60.  That gives you an idea.

My mri, I am not sure how it was ordered but I will check.  He mentioned MS so I would hope he would do the right test. HA what am I saying.....I will check on it for sure!

I guess that I have always been a health anxiety kind of person.   I suffered with  Menieres Disease 20 some years ago and that was enough to put me over the edge.

My Rx to myself is to STOP GOOGLE-ing. If you are anxiety ridden-- it is not good for you!!!  

Thank you for the trip advice. After reading your comments, I AM GOING!!  I havent seen my friend in 7 years and another friend is traveling with me so I wont be alone. I dont know if my GP will give me anything for anxiety or not.  I read that L-theanine is good for that.  Do you know if that is true?  Getting into a psychiatrist would probably, from a timing stand point, not be possible before my trip unfortunately.  

Thank you so much for talking to me.  I cant tell you how appreciative I am.  For the first time in this whole nightmare....a doctor has listened to me!  THANK YOU and thanks to everyone who responded.  

DT

[Quixotic1]

Hi, and welcome to the forum.  Nothing about what you told us is the product of a hypochondriac.  Pain is pain and weakness is weakness.  

If the leg is weak and doesn't support you like it should (stairs, running, jumping) and you had drop foot - How in heaven's name can you have a normal neuro exam?  Who did this supposed neuro exam?  You should have had a thorough head-to-toe exam from both Neuro #1 and Neuro #2.  Part of that exam should have been a careful comparison of all of the major muscle groups in the arms and legs - comparing one side to the other.

What are your reflexes like?  Did you almost kick the doc in the goodies?  You missed?  drat.

You call yourself a hypochondriac - the nicer term is Health Anxiety.  I suspect that the doctors see this or it is in your record.  That may make them quicker to dismiss you.  That is very unfortunate.  Even people who are panicked at every little sensation can get bad things.  This does not sound like an over-reaction to something minor.

However, it it too early to google all the diseases and plan a funeral, lol.  Even if this is MS, it is not a death sentence.  It won't even change your life expectancy.

At this point, do you see anyone for your anxiety?  It might be a good idea.  While the emotions and terror are running this high, it is hard to evaluate the real neurologic symptoms.

Did the Physical Therapist document any leg weakness?  This is something that you might do.  It is important to get documentation of everything you can.  Even seeing a psychiatrist can help in that they may be able to show that you do have significant neuro problems despite the anxiety.

My vote is to go on your trip, but take steps to not ruin it for you and others.  that means to use whatever tools you have to control the anxiety - meds, meditation, exercise, talk therapy.  If something really notable happens while you are away, it can be documented in a different ER where they do not know your history.

Many of us know the worry that goes along with symptoms that are being brushed aside, but that we know are real and disabling.  It happened to me and I am a physician.  Why don't you hang around here and talk and ask questions and get some of the worry out, but plan on the trip.  It's not that long - 3 or 4 days?

If your GP really does not believe you, then you need a different doc.  All of us should have doctors that we trust and that trust us.  I see that you are in a difficult position, but I think there are good ways to go about dealing with it.

The MRI is a good step.  Is it just of the brain or will it include the spinal cord?  Also, I would have you call the imaging center and ask if it was ordered to be done using the MS Protocol for MRI.  That is important.  The regular method of doing the MRIs can miss small lesions.

The key here is to take steps to control your anxiety.  It will make the whole process easier.

Take care,

Quix, MD

[Sparkysarah]

Just to say thinking of you and I can really empathise with the worry/anxiety of not knowing what is going on. Only you can decide whether to go on the trip and I guess it will depend on how you are feeling..but it may do you good to get away?
Sarah

[Melissa072]

Try not to stress out too much, and believe me I know its easier said than done.
I've been on this emotional roller coaster for 3 years now, trying to get answers.
I'm sure others will chime in with their advice also.
All you can do is get to the right Dr if you feel something is not right, if you don't get any satisfaction with them, move on and get a 2nd opinion.
Its your body, and only you can feel is something just isn't right.
Hope you find answers soon, and remember, try not to stress too much, it can make your symptons worse.
Melissa