I am a newbee here.I do not have much knowledge about MS nor the Neuro here is able to help much.I wasa dxd PPMS by the local neuro in 2004.I had have a major relaps in 2006 and i went to a better hospital where they said it is PROGRESSIVE MYELOPATHY.DEMYLINATION ? PROGRESSIVE MS"
I have been experiencing worsening in my symptoms particularly walking and fatigue for six/seven months ,which was pretty bad few days than a bit better for a day or two again started worsening.I had several appointments with the neuro who gave me Oral Methylprednisolone 16mg*2 for 5 days / 8mg*3 (5 days) /8 mg*2 (5 days) / 8mg a day to be continued.For a day or two i felt much better ,but back to the worsening position.On a whole better feeling six/seven time (few of it's own and other after taking Methylprednisolone.I think those are pseudo remissions.A month back it was a full flagged relapse ( i could not got up from the bed).I took three Ivs Methylprednisolone Sodium Succinate 1000 mg*3.The situation does improved but not to my expectations.I still feel weakness at the lumber.Walking is still difficult for me.How , such things be explained ?Pleeeeese let me have your valued response WITH SUGGESTIONS.
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.
Welcome. My MS is progressive. I am now disabled. As I understand, the only meds that will work are for treating symptoms (not like DMDs).
You may need a time away for rest. Without a respite from the daily stresses and strains your system to worsen. I have found that after learning my triggers, I can avoid most of them. Though you can never have a 100% normal life like you did, you can reset your benchmark and establish a "new normalcy" .
To others, I may have bad days everyday, but that is their POV. My POV is that I have established what is a good day for me is normal for me. Perhaps you can find a new normal for yourself.
I am on disability nowadays. I use hand controls to drive, a power chair indoors (occasionally outdoors), a service dog and a cane to walk with, and a whole "lotta" prayer. If you can learn to store your energy for life events, you can make your life more manageable.
I now use a passive exercise bike to continue my physical rehabilitation. This has helped me much. I had my best physical exam since 2002. I would encourage you to stay positve each day. Come here as often as you need. I will keep in my prayers.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Last edited by MSJayhawk; 09-27-2009 at 08:14 PM.
Reason: Brain hiccup