I was diagnosed with MS in September 2017, after a long period of thinking I was crazy, no one really beleiving me, including my family doctor. I started crying when I found a doctor that believed me and sent me for an MRI, and then my MS was discovered, followed by spinal tap and many other tests. I was told that I most likely have Relapsing Remitting MS, but the doctor said they could not be sure unil more time passed and I either got worse or better. I am on Copaxone for 3 months, but have had no improvement in my symptoms. I was hospitalized twice and given steroids with no improvement. How do you know if you have a progressive form of MS?
tincture of time. why were you hospitalized?
I received 2 weeks of solumedrol treatment in hospital for Transverse Myelitis, along with lots of tests. Did not help me walk better or gain feeling in my legs.
v, In the beginning, after diagnosis, does it really matter what label they put on their diagnosis?
First, we always make it worse, our mind makes up so many worrisome scenarios that we think it is the end of the world, immediately and even right away.
Second, there is the initial effect of the exacerbation that the body and mind is reacting to. The mind is scurring to fix everything at once, and the body is reacting to all the stimulii the nerves are sending. It is like a machine gun shooting feel good pellets everywhere, even where it is not needed.
Third, are all the new drugs that are entering the system. Steroids are wonderful, sarcasm of course, they are suppose to make us feel better but they always make us feel worse even if our systems are reacting positively. Like all the stuff being crammed into our veins which are already full up.
Fourth, is all the confusion of the newness of the changes made to our bodies and our minds that we are confronted with. We are creatures of habit and change is something we resist with avengeance, we fight it tooth and nail, instead of observing and adapting.
Fifth, we constantly expect something instead of expecting nothing, we expect a certain outcome even though we are in new territory. If we do this, then this will happen, instead of thinking, if we do this, WHAT will happen?
Sixth, a better question instead of what kind of ms have I, is what course of action or changes in my life should I make to improve my circumstances, but we always make our imagination run wild until we are so worn out and exhausted we have no other choice but to forget about our imagination and move on.
Now that you have been diagnosed with ms. what do you want to happen? what must you do to make it happen? what will you do to make it happen?
And besides all of the above, IT IS NOT YOUR FAULT THAT YOU HAVE MS, there is nothing in your life that you have done to make this happen, it is just the luck of the draw, like being born beautiful, or gifted or talented, or short or fat. And you are not special because you have ms, you are just challenged about life in a different way, and it is up to you how you meet the challenge. maria
Very well said. But it is really not just the luck of the draw. Our MS can, unfortunately, be inherited. I also think we are being challenged every day because we don't know when we wake up what kind of day we are going to be experiencing.
yes, Carol, the luck of the draw. Three in my family have ms, the rest didn't draw the same cards as we did. So even though there are genes involved, not every member of my family is as affected as we. That is what I mean, I guess I am sloppy with my words today, will have to think of another way to express that point of view, duly noted! thank you.
In my case no one in my entire family (that we're aware of anyways) has ever had MS.
one comment that the neurologist made yesterday was that 'they' dont know why two people with the same genes and one gets ms.
I have progressive MS. Only about 10% of the people that have MS have progressive. My doc told me that when you have relasping, then you get a symptom, like trouble with your vision. It will get worse, then better. The symptom might go away completely or you may be left with a vision problem. Then something else might happen, like trouble with your leg. Again, it will get worse, then better but may or may not go away completely. There could be a long time between these "relapses" or a short time. When you have progressive, something happens but it never goes away. One of the things for me is that my nerves are telling the muscles in my legs and feet to be really tight. It started out mild but has progressed to the point that I have to use a walker all the time. It never goes away, just keeps getting stronger. Of course, add all the other things to it like numbness, loss of balance, shocks, spasms, etc., it makes for a pretty painful life. I sincerely hope you have relapsing...not that I wish anyone to have MS...but it appears to be the better of the two!!!
I have a similar story. Only I was diagnosed then called crazy. Kind of ironic but I was going through nursing school at the time so everyone thought it was stress and depression making my symptoms worse. I was on Avonex and I knew it wasn't working but the doctor insisted it was. Finally I went for a second opinion but I had never had an MRI of my spine. He did one and it lit up like a christmas tree. He sent me to a top MS center.
I thought the same thing I had progressive MS. I didn't though. They did a hardy round of IV steroids. Then I started on a medication that we were hoping worked. I also went through a lot of holistic care like physical and occupational therapy, I saw a psychiatrist and psychologist.
I worked very hard with my doctors and other providers I got back to a stable point where my symptoms are noticable but I can still work full time and lead a normal life. My advice to you is if you need a second opinion then get one. If you feel the doctor isn't listening then find a new one. If you are comfortable with him/her then tell them what is going on and your fears of progressive MS. Talk about options like physical therapy and occupational therapy. Good luck!
Also MS society is a great resource for questions and concerns. Reach out to them maybe they can help you.
Gabrielle, Thank you! I met with my doctor again and got an order to start Physical Therapy, new MRIs to see if progressing, and more blood tests. What MS center did you use? I am having a difficult time finding a place that can really help. There are very few Neurologists where I live, so I travel to Medical University of SC in Charleston, SC for help, but they keep losing Neurologists, so I am seeing a Nurse Practioner, who has been good. Just find it so hard to get anything done quickly, and I have to keep pushing just to get anything done. I am hesitant to switch to Duke because it will take more time to get an appoinment and then more trips before I can get answers. It took many weeks just to get a doctor to precribe Copaxone. Crazy frustrating. Do you have any memory problems? I have employees looking at me like I am crazy because I am apparently forgetting conversations ad decisions I have made. The nurse just said it was stress not the MS, but I am not so sure.
You might find this helpful
Under each type, there is a button to learn more. I think it is there where the NMSS discusses how each are diagnosed.