This morning, I listened to Ann Romney as she described her experience with multiple sclerosis on CNN Live. I consider myself a person with a great deal of hands on experience when it comes to MS, and how the rules of the game have changed throughout the years.
MS, and various diseases can mimic other diseases; Ann Romney, diagnosed in 1988 with no visible symptoms, and few flare ups, (as it seems during several interviews) which go away in a matter of weeks, or even days, has the least chance of developing a case of chronic progressive or certainly progressive MS.
Multiple Sclerosis, considered a common disease, so common – seven people in my immediate (four) block neighborhood while growing up have Multiple Sclerosis. This, with many others outside this four-block area is considered a cluster. The Upstate NY region is one of the highest regions where MS has been found, it is known to be a disease of the Northern Hemisphere. Researchers continue to search for a reason, recently, Vitamin D – learning that those with low D levels seemed to have MS – sunshine and the Northern Hemisphere. In my thoughts and experience I think it is a gathering of many ailments all linked into different categories, the main being MS.
In 1988 if Mrs. Romney showed severe signs of MS she would have been admitted into a hospital, received a week of steroids in her veins, hoping the inflammation which was likely to show by looking at the Optic Nerve, would clear. So tell me – with inflammation and steroids how any neurologist could think pain was not part of this disease?
I can’t tell you the entire story of Ann Romney’s beginning’s of this disease but if she complained of not knowing which way her big toe was going, or the small pin on the leg area, “which one is stronger,” the neurologist was following the nerve. She would not have been administered drugs, but probably, if lucky, given a MRI to search for lesions. This too is not always the case with some people with MS, they have no lesions, but have MS. Could they fade, yes – new ones are brighter on the MRI. And, some doctors would have taken Ann Romney’s first symptoms and told her to return in a couple of months, or six months, and to call if things returned or worsened.
Ann Romney is extremely lucky with her MS and symptoms, considering the length of time since her diagnosis and her experience with the disease – she appears to be doing extremely well. I do remember the time when I wrote an article, “But You Look So Well.” Many MS patients look just like anyone else, and their symptoms never show.
Some believe MS maybe a collection of diseases but all carrying the same name since nothing new has been found to take its’ place. Take the person with several attacks of Optic Neuritis, but it never leaves the eyes. Unfortunate people in Mrs. Romney’s time no treatment for Optic Neuritis, a knife like feeling shooting through the eye, with long term therapy to heal the inflammation and save the nerve.
Today a clinical neurologist will not diagnose MS unless it shows up in more than one place in the nervous system, including the brain and spinal cord – you must have several attacks with changes on the MRI – but many doctors believe you can have MS without the criteria in writing – for doctors to follow. Every patient is different and so are their symptoms. This is why it could be known as the catch all disease for many who are suffering with relapsing, remitting MS or probable MS.
There might be a genetic theme to the optic neuritis – many who have experienced this have others in their family with the same symptom, lose of vision, knife like pain, and years ago, blindness. MS as of today – is only 3% genetic. The chances of you and a family member having the same disease is extremely rare. Recently I learned of a mother and daughter with the same symptoms, concerning vision, and after speaking to them, others in the family had identical problems. This family dated back to the late 1800’s when one member went completely blind. No one knew what was wrong with her. What is interesting, Optic Neuritis is one of the first symptoms, and this family is quite rare, considering the odds of three percent.
However, when Ann Romney was diagnosed she was lucky to have the MRI, different from today’s powerful MRI’s and also the Pet Scan, but still a simple way of diagnosing lesions. Then, it was watching the patient over time, perhaps six months as stated above, not listing at the time, MS must show up again within a certain period of time. Yet, all patients are different. Patients diagnosed by simple testing, like Ann Romney described, movement of the big toe, etc. sometimes were told they had MS and never did. Some doctors believed a clinical exam was all you needed. Today, even with all the magic of the great diagnostic tools we have people walking around with the diagnosis of MS who have no lesions, but at one time were diagnosed, first as probable, then with MS due to the fact symptoms continued to come and go. This is why I believe MS can be more than MS but many other diseases.
Many things bring about diseases and flare up of an old problem, such as stress, over work, even depression. (to name a few) Flare-ups in Ann Romney’s case will come and go, and perhaps never return again. By the interview this morning, it sounded like she was surprised by a recent flare up which makes me believe she is one who can still be questioned when and if something else takes the place of MS – she is the one, “But you look so good.” Even if she has a label of relapsing remitting MS – she has a very mild form of the disease.
Even the best Neurologists admit they make mistakes as the disease continues with research, but the problem, more are labeled. You might wonder how many are walking around without the label.
I served on the Government Relations Board for the Multiple Sclerosis Society. In 1980 I had severe pain in one eye – with a dose of steroids it went away. The same pain continued to return, as if a knife was passing through, and the steroids removed some inflammation and the pain remained – but then, pain wasn’t part of MS – and yes, I was looked at like I had two heads. Today vision problems is so common it is one of the first symptoms for MS and doctors treat the pain. Those who have only vision problems are listed as probable, other’s are different, as different as the patient sitting next to you in the waiting room. But, take the fact that you can have two things at once, and one could point to a probable MS diagnoses, while the other, in the nervous system, could be from something all together different. These, are those patients walking around with a label who never investigated the second problem. The unfortunate thing, being diagnosed with a label, like rows of beans – all picked from the same field but are called something different.
I believe all patients are different, and I am thankful for the newest technology – it gives a helping hand to the doctor with only a clinical diagnoses. We are on the first of four corners, and soon, this “popular” disease will find an end.