Re: Confused,plz help
Sorry you are having such a rough time. Primary Progressive is not one of the more common forms of MS- only about 15% of people have it, 95% of the people here, like myself will be talking about Relapsing Remitting forms- the most common.
But, we do understand MS in general, and do hope that youll continue to post with us and share your fears/concerns and ask questions. So, welcome to the board.
The steroids which you took, the steroid packs- the pills- were VERY low dose. They arent going to make a huge difference to you; however the IV steriods, which most of us refer to as IVSM (IV SoluMedrol) is what will help you in some ways....both types of steroids are to shrink inflmation of the nerves, thus offering comfort to you, and hopefully to try to reverse damage being done. It wont work 100%- so any "help" you get from it, consider yourself lucky....there is no way at this time to reverse damage from MS attacks. The normal course is 3 days of 1000 mgs, but many Neurologists go up to 5 days- which will help you even more. You might want to discuss if you have to repeat it, doing it for two extra days. Unfortunately, there are side effects to using steroids as well- and the more often you use them, the less effective they become. So, most Neuros limit it to no more then twice a year, and save the usage for when things become really bad.
PPMS also affects the spine alot more then it affects the brain, therefore, you are having the lumbar issues you mentioned- thats par for the course. My suggestion to you is to get involved with your local MS society and try to talk to others in your area of the world who are going thru what you are going thru, they may have suggestions of docs they prefer, therapists who have helped them (PT might help you) and even things like swimming activities or yoga classes to help build up some strength. Its a start. Also, you want to eat right, and make every effort to exercise within your limits- stretching, pilates, yoga, all of these things will give you some control back. Eating, doesnt mean sacraficing- but it does mean limiting inflamatory foods, things like tomotoes and eggplants can cause aggravation. Adding fish oils to your diets, either in the form of good supplements, or eating allot of salmon and high fat fish- will help as well. So will of course following a heart healthy diet. Low in saturated fats, high in veggies and fruits.
Let us know what other questions we can help you with, and truly-look into your local chapter of the MS society. Sometimes, connecting with others in your area can really help.
RRMS- dx 05