Learn as i go....
well i guess if this is going to be my MS journal, my first entry will be a little long so i can get it up to date. December,2010 i woke up to a numb prickly sensation on the left side of my head. Over the next couple of days it increased in intensity and i lost the ability to taste. I went to the ER thinking maybe i was having a stroke. The test all showed negative for stroke so i went to my family doctor who thought maybe it was trigeminal neuralgia. This sensation lasted over two months and then disappeared. Every once and a while a light tingle/prickly sensation would return but go away in a matter of minutes. Fast forward one year to Feb 10,2012....i was working at my desk when i realized i could feel a spot the size of my hand on the right side of my chest. That evening i lost feeling from my chest to my waiste and the next day...all the way to my feet. I again went to the ER who ran some test and then 4 MRI's. They found two lesions (one on the left side of brain and one on my T-4) The T-4 was exactly where i lost my feeling and it the spread to my feet. They put me on high doses of Prednisone for the next 5 days but no improvement. My neurologist suspected a possibility of MS so he order the lumbar puncture. The results came back positive for Mylein protein as well as oligoclonal bands. I was then given my diagnosis, which is odd because of how i have read alot about the reluctance for the doctors to give this diagnosis. Anyway, i then began to have difficulty walking. When i first stand...my legs would kind of lock in place then shake a bit, then unlock.My symptoms were mostly the numbness and the shaky legs but as of two days ago i have been getting alot of pressure on my stomach. Kind of like someone is sitting on my stomach. The stomach muscles feel like they are contracting or something. Today is three weeks since this started and all the symptoms are still present. Its difficult to work....cant seem to focus too well. Lets see what tomorrow brings.
Replies
Hi keepSmyelin and welcome to Daily Strength. I took the time to check out new members and saw that you were new here. Then I checked out your profile because I wanted to send you a hug and a welcome note. I am the MS board\'s community leader and this is something that I periodically do, welcome new members! I was pleasantly surprised that you had figured your way around the site and started a journal entry. Good for you! It is a good way to get some things off your chest by writing about them.
Yes, your dx came rather quick, but that is the best way. I don\'t understand why doctor\'s don\'t dx faster than they do when all of the symptoms present themselves and all the tests are positive (like the MRI and the LP). I\'m so glad for you that you didn\'t have to wait more time until another MRI could be taken - just to see what it produces. That is the most ridiculous thing doctors so often do. I believe that early treatment is the best for stopping progression of this nasty disease. Or at least head off some of the damages.
I was 6 years before a dx. after symptoms presented themselves and MRI was indicative of MS. You didn\'t mention what therapy you were on. (That would be an interesting topic for the future entries!) I started on Copaxone, found I was allergic to it, then on to Avonex. Avonex was the therapy from hell, and I hated it. That lasted months, before I couldn\'t stand it any longer and was ready to give up treatments for my MS. Then my doctor put me on Tysabri. I\'ve been on Ty for about 14 months, only to find out that I\'m JC Virus positive and I have a history of melanomia (skin cancer) so I have to stop. I\'ve had my last infusion of Ty in February and will have a dry out period for the next three months. Then I will start Gilenya. Oh boy, another darn therapy. I\'m not very happy about the change as Ty was so wonderful. No side affects, no painful shots. My doctor said that most patients that stop Ty experience flares, so I can expect that coming within the next few months.
Anyway, I\'m glad your symptoms are limited as they are. There are so many symptoms people experience with MS. However, I\'m sure they were just an disabling as having many others. I\'m sorry you have to join the club that nobody wants to be a member of, but if you have to, DS is a great place to be. I\'m sure you will make many friends here and get lots of support for all your questions and concerns. Feel free to rant if needed too. You will see, nobody holds back here! You mentioned that it was difficult to focus. This is to me one of the scariest symptoms of MS. What is it doing to your mind? I have a hard time concentrating, forget how to do tasks associated with my job, forget conversations I have with my husband or other family members - just forget everything. I hope that MS doesn\'t affect you that way. Maybe it is the stress you are under being newly dxed?
You also mentioned your stomach pressure. Have you thought about the MS hug? You will have to research the hug, but that certainly could be it?
I found that the book, MS for Dummies, is one of the easiest books to read an help me understand my disease. The internet is great source too, and free - the best part of it!
If you ever have any concerns about DS or questions on your MS, please feel free to message me. If I don\'t know the answer, I can always find the answer for you. Again, welcome to DS\'s MS board. I look forward to reading your journals in the future. Lynne
Thank you so much! I did the research about the \"hugs\" and you are right on the money! Although i think the name is deceiving.....i usually like hugs. I think i may learn more from here than i will from my doctors. As for what therapy i am on...well, i am self employeed and gambled on not paying ridiculous premiums for insurance and it appears that was a bad move. My doctor however got me approved for a clinical trial for a new drug (ocrelizumab) vs. Rebif. so far this drug has been very promising and if it continues to have success in the trial it will be approved by 2015. That gives me three years to figure out how to get some kind of insurance. Any suggestions?
Hey, just want to let you know that Copaxone and some other drug companies have programs for people like you. Check out Shared Solution\'s website and give them a call....They are GREAT! and will help you research all the possibilities.
It may come to the point you might have to file for SSD so make sure to get a good paper trail!
For the hug.....it sucks! I suffer from that the worst!!! Zanaflex has helped a little, but it just seems to have to leave on its own.....I call it the \"Creature\" cause I get such a pressure that I feel like a bloated toad! I try to keep moving and stretching through out the day and hope that someone will flip the switch off!
Hope we have helped a little.....and try posting that last question on the main board....I know there are people out there in the same situation.
Praying you have a better day!
Dee
Thank you Dee!! I will check that site for sure. Youve described the hug thing perfectly....i feel like my stomach is going to pop! Also have a hard time maintaining my focus......i drift off topic and forget where i was going with a conversation. That is my biggest worry as i am a problem solver by trade...if i cant do that, im in big trouble! Thanks again for your advice and kindness
I thought it could have been a stroke also.
Me too. Actually all of keepSmyelin history is similar to mine. I think gender has a role in the way the MonSter progresses. Good luck to you keepSmyelin.
If you ever need another guy to bounce things off of, just give me a yell.
I too was in that type of business......sad to say I had to give it up. But my MRI\'s look like someone took a paint brush with white paint on it and stood back and flipped white paint all over a black background. My worst problem is that I have it in the white and grey matter with the worst being around the nerve that controls the heart and lungs.....I know great right......but hey I feel blessed and live everyday like it was the last. So if you find that you are loosing grip on your rope.....my hand is always out to catch anyone.....we can swing on my rope for awhile!
Wishing you a great day!
Dee
:) the hugs are not fun like hugs should be.
Well, now that I\'ve read all about you, welcome to our little family that nobody really wants to be a part of, but are so thankful for each other. I do believe I learn a lot on this site in comparison to doctors sharing their medical views only. Once I started on my Rebif, it did take several months for the symptoms to go away, and even today, they still come and go as they want regardless of what I have planned or would like to do! Thanks for sharing your story!
Amy