As I have been reading blogs written by other caregivers or MS patients, that joke that goes around “How many xxx does it take to….” comes to mind. When Lynn was first diagnosed, I had a basic knowledge of MS and figured that he would have a neurologist to manage all his care but what we have discovered is that specialists only manage their specialty. If there is a hint of another problem, then Specialist 1 refers to Specialist 2. Often time Specialist 1 doesn’t talk to Specialist 2 and therefore, each Specialist does his/her own thing.
Now, I’m all for having specialists because medicine is very complicated and I whole-heartedly believe that one individual cannot know everything about everything or maybe about anything. In fact, the more I learn about anatomy and physiology (i.e. body parts and how they work), the more I know that I don’t know nearly enough. What I don’t understand, however, is why the specialists don’t all talk to one another.
In theory, that’s what a general practitioner (i.e., Family Medicine or primary care physician) is supposed to do but they can’t do it unless the others all provide a summary of what they are doing as well and keep them in the loop.
When you have MS you will probably need most, if not all, of the following at some point:
- A GP or HCP – (General Practitioner or primary care doctor) to handle colds, flu, new symptoms, oversee your general well-being, etc.
- A neurologist – The one who will handle your medications for MS and in general treat your exacerbations and keep you informed about your condition.
- A urologist – Often the water works don’t work so at some point you might develop bladder or kidney infections or have a need to self catheterize because it’s hard to keep your bladder empty or there are embarrassing leaks. If bladder pressure increases and causes damage to the kidneys, then a nephrologist (kidney specialist) might also be needed.
- A psychiatrist – People with MS often have depression or difficulty adjusting to the changes in their bodies and lifestyles. It’s good to have someone to talk to and someone to manage medications so you might also have a counselor
- An ophthalmologist – visual changes often occur and may be one of the first symptoms experienced that lead to the diagnosis of MS.
- A physical medicine or rehabilitation specialist – to direct your need for physical therapy, occupational therapy, control of spasticity, ordering assistive devices, etc.
- Pulmonologist – sometimes the muscles that control the diaphragm become affected and breathing difficulties occur.
- Hematologist- many of the MS drugs cause decreases in the production of blood cells. A hematologist can help determine how best to assist the body in reproducing the necessary cells or providing support in other ways.
- Speech pathologist-often needed if swallowing or speech becomes affected.
Of course, once you get an autoimmune condition; other medical conditions often develop as well leading to more specialists….
- hypothyroidism, which is the low production of thyroid stimulating hormone leading to the need for an endocrinologist
- bowel or other GI concerns which may require the assistance of a gastroenterologist.
- Heart arrhythmias or high blood pressure due to medications or anemia, etc. requiring a cardiologist
- Surgeons to implant pumps to deliver anti-spasticity medications or maybe a feeding tube or nerve block.
- Skin irritations, abnormal growths, wounds, dry skin…all of which might be addressed by a dermatologist.
Are you getting the picture? MS can affect any “system” in the body. Whenever the myelin degenerates due to a lesion eroding the nerve covering…whatever that nerve supplies will cause impaired functioning in that area this is no longer getting the necessary stimulation. So essentially though there are often well-known symptoms of MS, any organ or body part could be affected. Any new condition could be MS related or it could be a new condition separate from MS all together.
So the thing to keep in mind here is that the only one who really knows the entire story is the patient and the caregiver. As Lynn’s caregiver, I keep a book of when he saw which doctors, what he was seeing them for, what they did, etc. I keep track of all his medications and take a revised list to every appointment with every doctor. When a new therapy is needed or a new symptom comes up, I try to remind the “specialist” about all the other issues that might be influencing the situation.
Therefore, you (and the patient) are the experts. You know more about your “patient’s” body and what works and what doesn’t work than anyone else. As Lynn started telling his doctors when he was in the hospital, “you know your specialty but I know my body so whatever you want to do, we need to decide together.” You have a right as the patient or as the “medical decision maker” to say “no” or to suggest a different course of action. However, it’s also important to realize that they actually do know more than you do about the specialty so don’t totally dismiss what they suggest. Just know that you know how you react and feel and that you are an essential component to the success of any treatment plan.
So, how many specialists does it take to treat one MS patient? The numbers may vary but the most important specialist is you (the big YOU meaning both you and the person with MS). If you feel you need something…ask. If you don’t understand what they are talking about, ask them to put it in simple terms so you can understand. Each medical profession has its own language so don’t feel dumb if you don’t know what they’re saying, chances are they can’t talk whatever your language of expertise is either. So ask! Get what you need, check behind them, and if you’re not satisfied, find someone else. It’s your life and the life of the one you’re caring for… so do what you need to do.