Hey cocoa, I have to laugh. I too had the hot flushes etc but my doctor turned me on to soy milk every day and black cohosh tablets. I am hot flush free. Since about 1 year now.
Also about the neuro, at least you are getting MRIs. I haven't had one since 1999. We in this part of Canada are so back logged waiting that some of us don't even rate an MRI to see what is going on. My neuro says she can tell by doing the standard tests that the disease is progressing and I don't need an MRI. It is not urgent in her words. But now I have new symptoms in this MS hug thing and I am told it could mean I have lesions on my spine and when I called to make an appointment with her, she called me back and basically told me no, that it was not and she hadn't heard of the MS hug and that I didn't need an appointment and that was that so there.
So in other words the patient knows nothing and they know everything. Right. I am angry today and upset also. I got some news yesterday and I am not happy. Neither is my GP. He is on my side, so don't take it. Stand up for your self and fight for what is going on in your body. You know when something is wrong in your body more than anyone else. Write down your symptoms on a chart day by day and take it with you to your appointments.
Ok, I am done spouting off for now. ha ha
Thanks Rhonda, it sure helps to have a place to let loose sometimes. It is so frustrating to have some issues and not have the doctor listen and understand. Man sometimes I could scream. But anyway, ha ha, thanks.
Hi cocoa, just hang in there. I started having symptoms in 1990 and the neuro told me that my symtoms were just not "text book" MS so after 8 years of not sure MS and many tests, I had 2 MRI's one in February 1998 and one set in November 1998. Then I was called and asked to come to the neuro's office on a Saturday morning at 8:30 in the morning. Well that terrified the life out of me. I was getting ready to leave for Florida for Christmas in a week. My husband and I walked into his office and he told me that there was no brain tumor but that there was definitely something wrong. He still would not say definite MS. We will watch and see. Then after a not great winter and a huge relapse of about 4 months of shaking and pain and tingling and fatigue and pins and needles and blurred vision and a whole mess of other things, I saw him on April 15, 1999 and he finally said "Well, you know when a person such as you has definite MS, you will have these type of relapses from time to time" So I immediately jumped on his words and pinned him down and made him admit that I do have definite MS and that it is Relapsing Remitting MS.
So it may take time and a lot of frustrating going for tests and doctors but in the long run if it is MS, you will get the diagnosis eventually. Be patient and try to stay calm. It is hard sometimes but stress makes symptoms worse.
We are here for you to vent anytime at all.
Hey, cocoa, keep trying to write your poems. No matter what. Keep trying. It is the effort that matters. And every day you can go back over them and do revisions if you want. But never give up. You know, I wanted to write that great novel. Now I am 50 years old and done. You know how that feels. To be that old and say you are done. Well darn it I am NOT done. You have given me the inspiration to NOT be done. I am going to write down my story and hopefully someone else will be helped by it.
You say you are having financial hardship, ok, so what can you do about it? You need to look around and see what kind of assistance there is. You said something about going to Welfare. Well that is a great start. That is what they are there for.
No matter what happens you need to figure out if you have MS and once you have the diagnosis then doors open for medications and treatments that help. Physiotherapy and even psychology, yes, even that. Emotional therapy, depression is one major headache with this disease.
You keep at your doctor and don't stop till you "run out of steam" to use the train terminology and your english skills are great and don't let anyone tell you different. You sound great to me. Keep talking.
Now, cocoa that is what I am talking about. That was really good. You need to put things and feelings down on paper.
Hey, I am on disability pension, so what. There is life after that you know. Things will get better you just have to believe. And keep writing. It does help.
Breast cancer is a horrible thing. My mother in law died many years ago from it. Horrible, she wasted away so terrible.
Take care and keep strong. Write and write and put your feelings in to your poems and I would like to read more of them.
Wow, isn't that the truth. I think cancer is so horrible. We with MS have a lot to deal with but when you see people going through the cancer treatments, it gives me a feeling of such gratefulness that I only have MS. How lucky am I to only have to deal with this.
I used to be embarassed to have MS. I didn't want to talk about it or go out because I was ashamed like I had done something wrong. Then I happened to run in to someone who had MS and wasn't like me at all, who was proud and not embarassed to talk about her problems dealing every day with bowel, bladder, walking, talking, shaking and all the other fun things that we deal with day to day. Well that put me right. Now I will talk to anyone and everyone who will listen and even a few who won't. ha ha.
And yes, I have started writing that book, just for myself, to write down what I can remember about what lead me from the very start of every prickle and pain to this point right now. The day the diagnosis came, the tests, the triumphs, waking up March 2, 2006 not being able to move my legs and how scary that feeling was, all of it.
You know we need to keep talking and telling everyone and informing people about this disease until there is a cure. Take care everyone. Keep in touch.
Hi there. Fantastic. As I told you before, it took me years to get a diagnosis and thinking I was crazy. You get to a point where you start to think that you are a hypochondriac or you think the doctors think that. At some time you have to ask yourself, when in the heck is someone going to believe you and take you seriously and dig further to find out what is going on here. At the rate I am going, I won't have any idea about this chest pain until I get back from seeing my girls and grandchildren in mid September. I just hope I don't have any problems while I am travelling. These plans have been made for just about a year now and I can't change them. It would just upset too many people and be too disruptive as we are also moving some furniture with us for one of our grandchildren.
But you go in there with guns blazing, rhetorically speaking of course, not literally, ha ha, and arm yourself with all your information and if you don't get the answers you need then walk and get a second opinion. That is your right. Keep digging until you are satisfied. Let me know as soon as you know anything. I'm here for you to let it all out or just talk, whatever you need in the way of support.
Oh, my gosh, that was beautiful, I honestly have tears in my eyes right now. My parents are both very much alive and well but I so feel your heartbreak and that you miss them. I don't know what I will do when mine go. It will absolutely devistate me.
I will be thinking about you on Wednesday and hoping you get the information you need. I sure wish these doctors would understand that we deserve to be treated with respect and that this is our lives they are dealing with and not just another patient in their day to day activities. I am in so much pain today that I have been gritting my teeth all day and my jaw hurts. My back and chest and up my neck is so tight and full of pain that I almost called the ambulance again today as I couldn't catch my breath at one point. The pain was just shooting up my chest on the left side of my middle chest area and up into my chin and then stop and tense right up and squeeze right tight all around the whole chest area and into my back and into my neck and start all over again. I have explained this to 4 different specialties of doctors and no one can figure it out so what more can I do? Except live with it.
Anyway, let me know how it goes with you and remember to breathe. ha ha Take care
Hi, cocoa, boy I pity that neuro, ha ha. He is going to get an ear full. Wow. Thanks for the web site. I also am going to do some research at it. I am going to look up this esophageal spasm that they keep mentioning as well. The brain and its wonderful way of dealing with things is mystifying and I can't see how these neuros think that they know everything when scientists are still trying to figure it all out. If the neuro know it all they why don't they have a cure yet huh? Tell me that.
Well, I had a bad night but not too bad today. So far that is, but it is on 11 in the morning.
And Annie, you be glad you have to wait only 5 months for an MRI, in Canada at least here where I live it is 18 months. We have a mobile MRI and share it with another City.
And cocoa, I have tried calling my neuro about the pain and she calls me back and says that it has nothing to do with MS and to call my regular doctor or to go to the emergency department. When I go there they just give me morphine and some pills and send me home with instructions to contact my doctor. So what is the use? Really, I am just chasing my tail. I guess I am just going to have to diagnose myself and then force the issue with my doctor when I find out as close as I can.
Pretty bad, eh?
Catch you later.