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I was diagnosed in 2007 with relapse remitting ms, last year it progressed to secondary progressive ms and it feels like all my support has vanished . My Neuro says it would do no good to be on DMD steriods or anything else and just to see him every 6 months and my ms nurse every 6 months. I feel so lost. I am stuck at home all day every day until my partner is back from working away on a week. Im sooooo fatigued, spasm like mad and can hardley walk. I visited my GP about my… read more
MaxCampey, I understand what you are going through. I had to take disability about 10 yrs ago. You are home alone most of the time and it is depressing. I now feel like all I am is a burden. I have had MS for 40 yrs but no dr ever tried to find out the underlying problem to the symptoms that would come and go. I was never treated for RRMS. 2 1/2 yrs ago, it went into SPMS. I finally found a wonderful Neurologist who believed me and my symptoms. 4 mths of grueling nerve tests as well as new MRI's and a lumbar puncture. He sat down with me and told me every nerve in my body is now damaged. He told me at this stage there is not much anyone would be able to help me with. I was floored even though I already knew what had happened. I am one of those who get ready for the worst and then if it is better than I thought, it helps me cope. When the words came out of his mouth I was stunned that all of my research conclusions were correct. My blood pressure is going crazy. My heart rate goes way up and way down. When I stand for more then a couple of minutes, I start passing out. 34 other drs had been telling me it was just a panic attack. "You are not going to pass out when you stand up,". One of the 1st things my new dr did was to take my blood pressure sitting, standing up and again lying down. My blood pressure bottoms out when I stand up. Yes I am passing out. I have to have a chair in order to do anything in my kitchen now and had to bathe sitting on the side of the tub today. I have had many tell me to find something to volunteer with. If I could volunteer, I would be able to work. I can't have any pressing appts because I never know from one hour to the next if I can get from my house to my car. My prayers are with you. I just read about stem cell research for secondary progressive MS that should be approved by 2017. Perhaps you will hold on until that.
Please don't apologize for expressing your feelings. We have all been there and not all blessed enough to have a place like this to vent. Shame on your doctor for not listening to you! Keep up the water aerobics. Maybe it is time to add some talk therapy. Your local MS Society chapter should be able to find something for you. Best of luck and keep your chin up.
@A MyMSTeam Member hi I added her and went to her sight will add you to its so sweet of you to be going though this crap with us, between you to gals I almost feel a little better. being a contractor for 25 years I wish I would have worked for one of these docs and ask for my money and tell them there's nothing else I can do at the end with out finishing job
@A MyMSTeam Member and @A MyMSTeam Member, I am so sorry that anyone has to go through this. I would love to be your friend with SSP.
I have my next drs.appt on Wed
of this coming week. my neurologist
told me there is nothing anyone can do.Your dr and mine seem to have the correct medical answer. At this time
there are no meds available for us. I started going toward natural healing over 4 yrs ago. I know that with
out the herbs and the essential oils I use every day i wouldn't be here at all. I did read about a new stem cell program which they say can be out in 2017.
I will update if I get any new news from my neurologist. My last appt was in November. I thought it was a little odd when he told me I didn't need to come in until 3 mths.
I have many different feelings. So many on our MS teams are positive and upbeat every day. I always
wonder how to be like that.When I start reading, I find that most of them are doing all of the things I
used to be able to do with an occasional week or a few days a couple of times a year that aren't normal.
I have resisted this board for many months. At first, even though I knew that I had MS, the 34 drs kept telling
me nothing was wrong. I didn't want to get so involved when it was possibly something else. I always tell the
truth so I didn't want to live a lie (even by accident). This has thrown me into the very center of the
nightmare I have been in since 2012. The depression continues to just keep getting worse. For 40 years, I
was sick most of the time. I had to have stronger and stronger antibiotics and cortisone until now, nothing
they have out on the market works at all. I am getting weaker each day. My blood pressure goes up way too
high when laying down and as soon as I stand up it bottoms out. I just bought me a new blood pressure
thingy that makes it so easy by going on the inside of my wrist (Got mine on amazon), I could not believe how different my readings
can be in one hour. Max, I don't know what will happen to those of us who are in these late stages but I am
open now for any info or advice anyone would share with me and that I can try to share too.. I am a regular
on facebook so all you have to do is type in my user name: suzette neal in Nashville TN. My email address is
(Email address can only be seen by the question and answer creators) That way anyone who needs me can email me or private message me on
facebook. Please take care everyone who sees this. Forgive me for not being on here
often but I could really need some friends about now. I will be praying for each of you.
hi if we lived closer we good get in the same boat, I thought I good help but the high blood a bones don't work out will ,I do starriod once a month as a reg med but it wont be long blood under control now.i found it to be they suck all the money they could and now it would be to much paper work for insurance to pay on any thing. it feels like I am to defend may self and live out my slow death. there are so many trails all over the place and all the meds may be 50% or not. looking back I cant believe the money spent, what I have been though , how I have felt then told there's nothing eles.i thick there's a lot of us in the same place . you need to look into biotin and ms its something you can try for your self that shows promise am and not being funny but get a pet, am getting over all the farm animals now but they give you reason to care and will under stand you better then any body
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