It’s become a far too common experience. People presenting with all the symptoms of Multiple Sclerosis, getting the diagnosis (more often than not the official diagnosis they receive is “probable MS”), and undergoing treatment are not finding any improvement of their symptoms. Some notice that with the injections many MS patients take daily, their symptoms had, in fact, worsened considerably. The experience is frustrating and painful, both emotionally and physically. Why is this happening? And why so frequently?
If this is the case with you or someone you know, I strongly encourage the patient with MS or probable MS to call their primary care physician’s office and request a test for Lyme Disease. There are several types out there, and some can throw false negatives, so if you are tested and the results come back negative, you have nothing to lose by requesting another test using a different method. At this point, you’re most likely already in pain and are definitely spending more time with your doctor than you ever imagined possible, so what have you got to lose.
Because both Multiple Sclerosis and Lyme Disease are diseases of the central nervous system, they both manifest themselves in ways that are different person to person. Multiple Sclerosis is caused by lesions, sometimes called plaques, that appear on the brain and spinal cord. Lyme Disease is caused by introduction of the BB virus into the body by the bite of a deer tick. This virus attacks the same areas as the lesions of MS. The deer tick is smaller than the dog tick, and as the symptoms come on slowly and progress over a period years, so many patients either don’t know or don’t remember that they were ever bitten.
Both diseases present with a host of myriad symptoms. Numbness or pain in the arms and legs, shaking or twitching, headaches, visual problems, depression, cognitive issues such as slurring of speech, memory problems, trouble speaking or recalling words. Multiple Sclerosis is far common than Lyme Disease, and has been much more widely studied. Therefore, most doctors are more familiar with MS and its manifestations, and are more willing to diagnose a patient with symptoms of Multiple Sclerosis even if the lesions do not appear on and MRI of the patient’s brain and spinal cord, and evidence of the disease does not appear in the spinal fluid obtained by a lumbar puncture. And it is not entirely their fault. A great many patients with legitimate diagnoses of MS live under just the same scenario. Many times the symptoms will present before the lesions are visible, and they will usually become apparent later in life. That having been said, it seems vitally important that any patient who is undergoing the grueling process of being diagnosed with any sort of central nervous system problem should absolutely be encouraged by their physician to be tested for Lyme Disease. Both diseases are debilitating, and for both there are treatments that can help. These treatments are vastly different, however. Patients living with Multiple Sclerosis have various treatment options, depending on the type and severity of MS they have. There are injections of betaseron that can help with some of the symptoms and lengthen the time between attacks. Some patients are treated with chemotherapy drugs. The treatment plan needs to be tailored to the individual patient and appropriate to their symptoms. The case is very different for the treatment of Lyme Disease. Patient’s with Lyme need to be put on a long course of antibiotics, which should be successful in abating their symptoms, and can in most cases extinguish them. This can take months or sometimes years, but the patient should start to see some improvement fairly quickly.
It is incredibly difficult for the medical community to keep up with every possible explanation for a patient who presents with multiple and varied symptoms. Most patients with both MS and Lyme Disease have already been diagnosed with everything from pinched nerves, to conversion syndrome, to migraines, to irritable bowel syndrome, to diseases of the nerves and muscles, and far too often, to psychological disorders and hypochondria. It seems like there is something different with them every day. The central nervous system controls everything your body feels and does, and the manifestations of a disease of that system really highlights that fact.
Although, as aforementioned, it can be very difficult for the physician of a patient experiencing central nervous system problems to discover just what is going on with that patient, it is long past time that they start testing for Lyme Disease in all cases where a definitive diagnosis has not been made. Lyme Disease has been misdiagnosed as Multiple Sclerosis in countless cases, and most of these cases were resolved by act of the patient doing his or her own research and then insisting on the test.
And patients, if you are frustrated and confused, and do not feel right about your diagnosis or the response you are getting from your treatments, do just that. Research, talk to people, do an internet search on your symptoms. Until medicine becomes and exact science, and we are not even close to that yet, it is important to be proactive in your care. Become educated. No one will ever be more interested in how you feel and what you experience than you are. You are your best advocate.