It had been almost five months since my official flare up which has led me to a PROBABLE diagnosis of MS. Since the beginning of the flare I have to honestly say I have not gotten better nor have i remitted. I know many of the forum member say that it could take a long time to come out of the flare but is that the norm for people with RRMS?
In the last couple of days I have Noticeqbly more weakness in both of my arms. This has not been an issue till now. When I try to anything with my arms above my head, my hands start to go numb and I can't keep them up. At mass this morning i noticed that my hands were numbing.
I have been taking Baclofen in the pm for a month, neurontin in the pm and started concert a in the am.
I seems like my baseline is needing a cane and having to move through every activity.
As I sit here typing this my legs are spasming and my arms are extremely weak. Last Monday I couldn't walk at all and talking was almost impossible.
When does PPMS become a diagnosis and how is it diagnosed. I just feel like I am spiraling down and trying to stay positive. I appear to be losing functions and the meds aren't helping.
Another issue is my auditory processing. When I am in a room with any noise, I cannot hear what people are saying to me. My cognitive functions are wiped and if there is anything going on like a party or music playing I just can't remember anything.
I have been saying prayers my whole life. Lately I can't remember the words.
I know some of my posts are repetitive and I apologize. I am just grasping at straws and am tired of people telling me about people they know with ms who are doing so great.
We had our annual party for our sons birthday/fourth of July. It is completely clear that I am unable to do the things I used to do. I was in a bubble all day. People are looking at me with those pitied looks and constantly telling me to sit down. On the other hand, there are people who know nothing about ms, why should they, asking me questions that just don't make any sense.
That's all for now. Thanks for listening and offering your experience, strength and hope. I can use it.
I am afraid to wake up in the morning because i have no idea what the day is going to hold for me physicallyand mentally. I am sure many of you know how qt feels.
(still undx) So my experience is based on that. One thing I have noticed is my sx are hanging out and getting worse during this hot weather without any letting up. If I also have a busy day, stressful day or other types of exertion, it also seems to make everything increase and last for days and days.
My cognitive functions are as you described, my right leg gets heavier, my electric buzzings will go crazy, I itch, I get right eye blurry vision, etc.
I also think that if medications are new it may take awhile for them to not only start working, but also for your body to adjust.
I wish I could give you a better answer as it sounds like you are having a hard time of it. Just be kind to yourself and enjoy the things you can. It is a new way of life but there is still so much good to hold on to.
BTW- God knows what is happening to you and is OK with you not remembering the words :D He sees your heart.
Hey sweetie. The board is quiet due to the holiday weekend. I am so sorry that you are struggling so much right now.
I don't know the answers to your questions as far as RRMS vs PPMS. All I have to offer is my own experience. My last attack left me with symptoms for about 5 months. But you really can't compare experiences, especially when you aren't sure at this point you have MS.
Looking at statistics never did me any good when I first realized I had MS. Really it doesn't mean anything b/c you don't know if you are in the 1% or the 90% and knowing your odds doesn't change that you might be in either category no matter how large or small.
Not sure I am making sense. My point is you have to keep moving and pushing your dr towards a diagnosis then do all you can to take care of yourself. Try and focus on something other than fear and panic (I know easier said than done).
I can't pretend to know how you are feeling, each of us has our own experiences. And none of us know where our dx may take us or how quickly. Tomorrow may be vastly different than today. In my darkest period I went inward and spent most of my mental energy on talking and listening to God.
I fell asleep most nights with a rosary in my hands (and a cheat sheet due to my foggy brain) and a box of tissues by my bedside. Peace was the first thing I asked for. I figured it was what I needed most to begin my MS journey. Of course I also asked for healing but figured that I wasn't any more deserving of receiving that gift than anyone else so even my healing prayer kind of morphed into a peace prayer.
If there were something I could say or do to help you I would Kerri. YOU and your dr's will be in my prayers.
Thanks so much for your answers. I really appreciate your thoughts and prayers.
I think i have to accept that I don't have control over my body anymore. My mind is the scariest part. I can't think straight half the time.
I am a very prayerful person. I put all of my trust in God and know that He will lead me down the path I am supposed to be on. It is funny you mentioned praying for healing. I teach at a catholic school and the priest told me he wanted to do an anointing on me and i said that maybe it wasn't Gods will that I be healed. I think I took him off guard.
My prayer for healing is that God take the healing I ask for and give it to someone else. I woke up this morning and made a pact with myself that I am not going to live as a sick person even though I am.
The not knowing is very frustrating but after all is said and done I have no control over where this disease is going to take me.
Again thanks so much for your kind words. I was just thinking yesterday that I had to find my rosary. Strength is worth a lot. I think that is what this forum is all about. Giving each other strength. That is the greatest gift.
Hummm, well said. During my darkest period I reached out to some of my closest friends who had amazing faiths. You know the kind, they always seem to be able to live in the Word so effortlessly.
They gave me so much love and calm that I knew that God was taking care of me through them. Being in the right place attitude-wise is priceless in any journey we take but especially important when our bodies are betraying us.
I got to the point where I just embraced where I was. It wasn't a giving up, I would never give up, but it was just an acceptance of the reality that my plans were going to be trumped by God's. Do I think God gave me MS? No, but I do believe that He would use the fact that I have it for His will. His will be done, not mine.
It's the part of faith that most find so difficult, that we have to surrender, that we are not the one's in control. I found that although I was still afraid, my prayers did bring peace and I realized that I was exactly where God wanted me to be spritually.
Spasticity is very much like paresthesias in that your brain can not tell where your limbs are because the joint position sensors and muscle strain sensors are not getting the appropriate massages to the central nervous system. When this happens, the CNS sends out messages to contract muscles to see if it can figure out where the limbs are. If the sensory messages fail to return, the spasticity can increase.
Drugs don't fix the problem, just the symptom. Once the damage is done, the brain has to fix itself, or the spasticity will just continue. Even IVSM may not change the course of spasticity. If the sensory loss is related to axonal damage, reducing inflammation is not going to fix the damaged axons.
My doctor pretty much said once I had spasticity in my legs, he wanted to know if it moved to my arms, abdomen or chest. He expects it to and says it is more a matter of time.
If it were me I would try to get on IV steroids? I am no Doctor but it sounds like you are having a lot of inflammation. Forgive me I forget do you have a Neurologist?
PPMS takes a lot longer to be diagnosed because it is subtle. I had a clear episode in 1965 which had me hospitalized and had Neurologists baffled. No one knew children could get MS back then. Since then they just thought I had brain damage. I had double vision, vertigo, cognitive issues, depression, tremors, and fatigue my whole life.
I forgot all about all the Neurologists up to the age of 15 and the brain damage. I never told Doctors that is embarrassing I left it off forms. I even forgot it myself.
When I was 44 my Doctor was doing my yearly exam and said there is something very wrong you need to see a Neurologist. I asked her what she was talking about I had always had weird Neurological signs. All the tests showed clear MS. For two years Neurologists said I had MS but could not prove it because I did not have attacks, exacerbations, relapses, whatever. I thought they were all nuts, there was nothing wrong with me. I was diagnosed with PPMS a year after being diagnosed with MS.
Ironically there is not much to be done for me. I have never been on steroids. I am not on a DMD at this point. If I can find one that will work I will try it. My family Doctor treats my symptoms as best she can. I see a Neurologist once a year.
Try to get some help if you can. I hate to think of you so uncomfortable.
Thanks guys. I have my next appt onjuly 11th ands hoping for some more info only situation. I will tell him all the troubles I am havingandaskhim what he thinks about steroids and the rate of progression I seem to be on.
I think at this point I hve to take it a day at a time and hope for the best.
Your questions sound a lot like the questions I had when my symptoms started and trying to find a diagnosis for what I had. I also wondered (actually - still do) about the differences between RRMS and PPMS. I have a diagnosis of RRMS - with what they call at least 3 "attacks." But I'm not so sure if I would call them attacks or not. For me, it seems like my symptoms have never gone away since they started. In fact, I would say my walking is worse (stiffness, weakness, & heaviness), and I have symptoms that add on to the other symptoms, and none of these really go away either - like numbness around my groin and around the left side of my torso. And instead of just the left side affected, my right side has joined in now, too.
I don't remember - have they offered you to start any of the DMDs, yet?
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