Do I Have MS?: A Cry For Help

Suggestions to help your neurologist with an accurate diagnosis of MS
by Laurie Long

The call came in late in the day. The woman calling sounded at the end of her rope. She and her husband had been living a nightmare for years. It started with vision problems: spots and blank areas in her vision. Then she had trouble with her balance, and numbness and tingling in her limbs. She started running into things and falling down. Her memory was becoming unreliable and her emotions got away from her more and more often. She struggled with constant fatigue and often felt as though her brain was heavy and lost in a fog. She had been to several doctors, one of whom had given her a "probable" diagnosis of MS. The neurologist she visited gave her an MRI test, but the results came back negative. Various other tests were performed over several months to rule out other neurological disorders. But no one could give her a definitive diagnosis. She was left with her pain and her increasing disabilities, was forced to quit work, and struggled to care for their three young children.

Finally, she found herself flat on her back in a hospital. She had collapsed in a supermarket. After more tests and negative findings, they sent her home. Someone told her to call the MS Association. She poured out her heart, her frustrations, her desperation and her confusion, looking for an answer to her question:

Is this MS?

Does this sound familiar? Are you one of the 10% of people who have MS, yet are struggling to get a firm diagnosis because the MRI or spinal tap came back negative? If so, then you are one of many people who call or e-mail us, looking for answers. And yes, there are other options to help get the treatment you may need to slow the progression of the disease.

The foremost aid we suggest to people are questionnaires documenting physical, mental, and emotional symptoms and their original onset. Often, when people go to their GPs or neurologists, they aren't able to give a complete history of their symptoms. They may feel uncomfortable "complaining" to the doctor, or they may not be able to remember all their symptoms, or they may simply not recognize an MS symptom for what it is. Documenting your symptoms, getting them down on paper, can make an enormous difference to the process of diagnosis and choice of the best treatment. People often have their family or close friends assist them in this. It helps to enlist someone else's memory, and it also helps family and friends understand that there are more than just physical symptoms to this disease.

Once the questionnaires are completed, a counselor or related professional can use this information to write up a symptom summary for your doctor or neurologist. You can also consult the MS Society, which has branch offices nationwide for medical and counseling referrals.

With the completed questionnaires and a clinical summary, you have something tangible to help your neurologist make a diagnosis and prescribe appropriate treatment. If the doctor or neurologist is not very familiar with MS, printouts of our website articles may help clarify some points, or they can access the main webpage.

Our questionnaires are now available for downloading in PDF format. This format can be read and printed out with Adobe Acrobat. Adobe Acrobat can be downloaded for free from http://www.adobe.com/products/acrobat/readstep2.html.

To see a video interview on early treatment of MS with MS specialists Frederick Munschauer, MD and Heidi Crayton, MD, click here: http://www.healthology.com/multiple-sclerosis/video3857.htm.

Was this information helpful? Then please consider making a donation. We are a small, independent nonprofit agency and are dependent on donations from our supporters. Thank you from all the staff at the MSA.