Here is My Question:
I have been to several doctors and also to an MS specialist who is still saying that my spots are suspicious of MS and that they are not active and old!! I have been having symptoms and the symptoms are getting worse week to week and having new symptoms that I just feel are pointless to tell her because I’m tired of her telling me that my lumbar puncture was equivocal for MS but was not within normal range either?? I still don’t understand what she means?? All my blood work is inconclusive except my C-reactive protein is elevated and my IGg index level was 0.70 in my CSF. I’m having a lot of issues with my right side and it all started with my left eye 6 years ago. I had an EMG yesterday that was normal except there was decreased activation of the right tibialis anterior muscle (not reduced recruitment).
The doctor suspected this is related to pain, as I did have pain with activation of this muscle, but decreased activation can also be seen with central nervous system disorders. I never told this doctor I had a Nervous System Disorder?? Every doctor I see that reads my report and look at my scans say do I have MS? I reply “NO”, that’s what I have been told, well what are these lesions?? I have no history of strokes, heart problems, alcohol, drug abuse etc!! I’m a 46 year old mother of two that has been trying to figure this out and get the right answers!! It’s not a B12 deficiency, yes I’m an anemic and have potassium issues but take care of these issues. I have been Vitamin D deficient for a long time, but no one has test me for this not once. I would like to send a picture of my lesions to see what others think??!! This has been so stressful ! Thanks
Thank you so much for telling us your story. I can feel your frustration. Let me try to explain.
In medicine there are many problems that can cause frustration among both patients and their physicians. The first is disorders without a diagnostic test and highly variable presentations and courses. Top of the list are disorders like MS or Lupus. These disorders rely instead on a set of clinical criteria for a diagnosis that are never perfect and are often applied variably.
For those who fail to meet the clinical requirements for a diagnosis of MS, it is imperative that their physicians explain what is going on and help them manage their symptoms. The patient must first understand that receiving a diagnosis will not necessarily lead to a treatment that alleviates their symptoms or even prevents worsening of their condition over time.
In most cases failing to meet the diagnostic criteria for MS after 6 years tends to be a good thing; usually, the person either has a benign form of the disease or another problem altogether.
What you need is a good neurologist who will take the time to explain why they think you do or do not have MS and is also willing to help you manage your symptoms. This can be hard but ask around I am sure you will find a doctor (perhaps not even an MS specialist) who is willing to help you.
Revere P (Rip) Kinkel, MDProfessor of Neurosciences
Director of the Multiple Sclerosis Program
University of California San Diego
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