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New Member

Date Joined Feb 2007
Total Posts : 5
   Posted 2/4/2007 9:37 PM (GMT -6)   
I posted this on the Chronic Pain and Lupus forums, but a friend told me I should post it here as well...

"Hi. I feel like you all know me already. Many of the posts I read paralleled my story in so many ways.
Here's a quick synopsis of me. (as quick as I can be, anyway) I am 37 years old, don't smoke, never have. Haven't drank in over 7 years. Never did drugs. I am a special education teacher and I work with the Muscular Dystrophy Association and the Wheelchair Hockey League.

Ten years ago, (when I was 27) I had Stevens Johnson Syndrome from a reaction to Sulfa (in the form of Bactrim) and lost all the mucus membranes in my body. Spent a long time in the hospital and have developed many medical issues since.

I was diagnosed with type 2 diabetes when I was 30 and have been able to control it pretty well with medication and diet. A little over two years ago, I started having pain issues and my primary doctor referred me to a rheumatologist because he thought it might be fibromyalgia.

The rheumatologist actually found through lab work that I have lupus (SLE). about the same time, I developed a constant pain in my right thigh. Some days I was unable to walk without a cane. The intensity of the pain has come and gone for the past two years, but has never gone away. I have had MRIs, EMGs, bone scans, x-rays, ultrasounds, etc. to try to figure out why it is there and every test comes back negative. I have seen rheumatologists, neurologists, chiropractors, pain specialists, and no-one can figure it out. University of Michigan Pain Clinic was totally useless. They never returned any of my calls after my initial consult. I even went to the Cleveland Clinic a few weeks ago to meet with a pain management specialist there, and got nowhere.

Over the past few months, I have developed excruciating pain in both of my legs, from hips to toes. Again, the intensity changes, but it is never totally gone. Right now I am in the middle of one of the most painful times. This is the second really bad "flare" I have had. (I have really learned to hate the word "flare" as a lupus patient. It doesn't do justice to what I am feeling.) I can't really describe my pain in simple terms. It's burning, tingling, twitching, cramping, kicking, stabbing, exhausting, pressure. I could probably keep adding words to that list. I've even fallen a few times because of loss of balance and the overwhelming pain. NO medications have helped. I've tried mobic, requip, cymbalta, lyrica, pain injections, and many other pain meds. Vicodin and skelaxin used to help me sleep, they don't even do that anymore.

The doctors say I don't have RLS, avascular necrosis, peripheral vascular disease, meralgia paresthetica or any nerve or tissue damage that would cause this pain. I begged my neurologist to be tested for multiple sclerosis and had the MRIs done. They came back negative, and she refused to do any of the other tests. I went back to my primary doctor, because he is the only one who seems to believe me that I'm not making this up. He has been very honest with me and encourages me to keep searching for the right doctor. Honestly, I'm losing hope.

My professional, volunteer, and personal lives are being destroyed. Only a few of my friends really know how bad it is right now. The rest seem to be tired of me complaining and canceling plans when the pain is really bad. My family has been supportive, but they really don't understand, either.

I have an appointment scheduled with a new neurologist on Thursday of this week. Any suggestions of how I should approach this appointment? I have already decided that I want to have the rest of the tests for MS, but don't know what else to do. I am constantly searching online for ideas at this point and would welcome the help and support.

Thank you for being here. noahshark"

Veteran Member

Date Joined Dec 2005
Total Posts : 896
   Posted 2/4/2007 9:48 PM (GMT -6)   
I'm so sorry you have endured so many medical problems.  That is alot for one person! 
As far as your neuro appt., I would write down any symptoms you have been having that are not involved with your other conditions.  There are many people on here in limbo land, negative test results but symptoms of a neurological disorder.  MS has to be diagnsoed with something coming up positive, MRI w/contrast (brain or spine lesions), bouts of optic neuritis, positive spinal tap (oglinigal bands, protein), evoked potentials...something.
You certainly have something going on, you definately need a good pain management doc, I think I'd find a new one of those too.
Take care and let us know how it all goes.  My thoughts and prayers are with you.
Michelle ><>
Co-Moderator MS forum
Happiness is not a destination but a day-to-day journey..

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 2/5/2007 7:09 AM (GMT -6)   
I suspect doctors aren't considering MS because that kind of excruciating pain isn't typical of MS. While some of us do experience pain, it's not usually that severe and unrelenting. I hope you find some answers soon.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 2/5/2007 7:12 AM (GMT -6)   
...and if it were MS, given the number and intensity of symptoms you're describing, it would be very unlikely for lesions to NOT appear on an MRI. As you've so very unfortunately discovered, there are lots of disorders that have similar symptoms, but over time, if it was MS, the lesions would appear...and they haven't. Usually it's in the very early stages of MS, long before there is the severity and intensity of symptoms like you dsecribe, that MRI's come back "negative" for folks with MS.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Regular Member

Date Joined Jun 2006
Total Posts : 329
   Posted 2/5/2007 9:14 AM (GMT -6)   
Noahshark -

Before you give up hope, try giving the Center for Progessive Health and Wellness a call in Monroe, MI. I, myself, have not had any type of the severity of pain that you are going through but I have read tons of letters and talked to many many people at this place that have and they have told me that these people have helped them so much. If you want the specific Dr that I went to, please feel free to email me. I went to them for chronic lower back and neck pain, they made ALOT of headway and right now we are taking a break until we figure out what is going on with me on the neurological side. It is a slow process, but it might be helpful for you to check them out. I felt kind of out of place at the center since I felt I was very minimal for what they were tackling there, but they never made me feel that way. Everyone there was very nice and was very honest on if they felt they could help you or not and what you needed to do to help yourself.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

Veteran Member

Date Joined Aug 2005
Total Posts : 682
   Posted 2/5/2007 1:47 PM (GMT -6)   

Hi noahshark

I am sorry for all the pain you are going through.  I know how difficult it is to have pain that others in your life don't understand and the uncertainity it causes.

I have alot of pain too and I can relate to the stabbing, burning description. I explain my pain in my legs as that and feeling like I am plugged into an electrical outlet, as I experience the pain in a pulsating way. Very strange and hard to explain.

I see you are searching for answers and I want to encourage you to keep at it.  The Dr don't know everything and I have come to believe you have to be your own researcher and advocate. 

I would suggest you look at Lyme disease.  The wide range of symptoms of lyme is something I didn't know about until recently, even though several people in my family had lyme.  Lyme can be a serious neurological disease that can effect every organ in the body and not just the typical joint related problems most people associate with lyme. The tests for lyme are not good and false negatives are common.  The best lab in the country is Igenex in Palo Alto, CA.  If you want to be evaluated for lyme you will need to see a Lyme Literate MD (LLMD).  Most dr are not knowledgable about lyme and treat with outdated protocols.  If you research lyme you will see there is some controversery about this disease. 

Just a suggestion to look into.  I was dx with MS 7 years ago and with lyme 1 1/2 years ago.  I wish I had known about the complexity of lyme years ago as I have many neuro problems that earlier tx may have avoided.

If you want the name of a LLMD closest to you ask on the lyme board.  I wish you the best of luck.

New Member

Date Joined Feb 2007
Total Posts : 5
   Posted 2/5/2007 9:36 PM (GMT -6)   
Thanks all! I'm going to see a neurologist at M.I.N.D. (Michigan Institute for Neurological Disorders) on Thursday. I haven't started feeling panic about going yet. I probably will that morning. Always afraid that when more tests come back I still won't have any answers. Talking to you all has been very helpful to me this week. Thanks again...
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