I’m sorry to hear that bup. I’ll give you my experience, but MS is really a very, very personal one, as its symptoms vary so much from person to person.
My wife has secondary progressive MS, which was diagnosed about 5-6 years ago. Hers first outwardly manifested itself in her waking up one morning with one of her eyes severely out of norm toward her nose, and concomitant double vision. The ER diagnosed her with a stroke in her optic nerve (I think), but after later MRIs it became an MS diagnosis. Once the diagnosis was made, other earlier issues which were written off, such as falling down due to her ankle giving out, took on a new meaning.
The eye problem went away after 6-9 months, but was followed later by some degeneration in her mobility which persists, loss of feeling in her legs and arms (they’re still not sure how it is she can walk at all; this lack of feeling also renders her unable to drive), and lately some occasional difficulty in swallowing. The most debilitating symptom, however, is really her fatigue. When she leaves the house – which is rarely – it is with a walker that allows her to sit when the need occurs. Her symptoms are greatly exacerbated by heat and especially humidity, which results in the air conditioner being on constantly in the bedroom.
She takes Rebif, or as it’s more familiarly known in the community, Rebarf. It is a three-times-a-week injection, and like the others in that family of interferon and interferon-like medications, the main side effect is flu-like symptoms and vomiting. As stated above these are very expensive, running around $2700 per month if without insurance (but there are programs to allay the cost that the drug company will hook people up with, if needed). The drug company also has nurses on staff that are available for consultation, and they will call every few months to check up on the patient and try to be generally helpful.
The Rebif seems to have slowed the number of lesions that appear each year on her MRI, which is good news, but the neurologist is also quick to mention that there’s no definitive correlation between lesions and symptoms.
In the case of the most common form, relapsing/remitting MS, the symptoms are wide-ranging but appear as exacerbations, often triggered by things like humidity as I mentioned earlier. If an exacerbation is caught early enough, they can treat the patient with IV corticosteroids over a period of a few weeks, which can sometimes shorten the duration or lessen the severity of the symptoms.
In rapidly-progressing cases, they can opt for a form of chemotherapy using a drug called Novantrone, which is used most often to treat cancer. This is an IV treatment that is given in the hospital over the period of a few hours every three months. It carries with it the same sort of side effects as most cancer drugs, although not as bad because the frequency is much less. My wife said that even though her hair thinned some during the treatment, that was the best she’s felt in quite a long time. Unfortunately there is a limit to the amount one can have during their lifetime, as it is apparently severely cardiotoxic, so it’s treated as a sort of “last-ditch” medication.
Wow, that’s a lot for a lurker to say! Don’t think I’ve “talked” that much here ever. Hope I’ve helped give a little more information, and I’ll be thinking of you and your wife.