New to this site but not new to MS

Hi, My name is Sue. I was diagnosed with MS on my son's 16th birthday several years ago. I actually told my doctor I had MS. She tried to tell me I had a stroke. After I convinced her I knew what I was talking about, she sent me for an MRI. The MRI confirmed my diagnoses. Then it was wading through several neurologists to find someone I actually liked and could talk to. The nurse practitioner there was awesome. She and I had a great relationship, then she quit. After that it kind of went down hill. The nurse practitioner that replaced her , I could not relate to. My neurologist was ok though. He has some form of muscular disease himself. It may be Cerebral Palsy but he never discussed it with me but I felt it made him more compassionate to my disease. I do know he got very frustrated with me. I can be a difficult patient at times and I do not do anything simply because the doctor says I should. I research everything and my brother researches the latest information out there for MS as well. I am currently on the high dose of Copaxone 3x week. I do not really like it but I tried Abagio and had major side effects from it despite my neurologist saying my symptoms were not from the Abagio. Oh well, what can you do? Enough about me. How is everyone doing after the holidays?

20 Replies

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  • Hi Sue, hope you enjoy this chat room as much as I do, its nice to be able to connect with people who understand what you are going through. Hope you had a good Christmas, blessings Jimeka

  • Thank you. I hope I enjoy this site as well. Nice to converse with people with MS that know what others are going through. I hope you had a good Christmas as well. NOW TO THE NEW YEAR !!!!

  • Im new here to Susan, and new to the diagnosis process, but not to MS. Now that Im learning more about it; I can track many symptoms back to childhood. I had a severe head trauma at age 6 and my Neurologist says that can contribute. I was diagnosed with Fibromyalgia in my mid thirties but before, during and since getting it under remission Ive had symptoms Fibro just never explained. Jan of 14' I saw a dr for the first time in 15yrs. Ive had both hips replaced & hysterectomy in between but now have %100 of symptoms. Glad I found this place!

  • Welcome, Susan219. It's always great to meet a new friend here. Just sorry it's due to MS. My former neurologist had polio. She was a few years younger than me, and walked with a leg brace and cane. She was extremely compassionate. But I sometimes felt like a whiner when I complained of my latest MS symptoms. It's good to hear that you and your brother are on top of things. We do need to be our own advocates! We all look forward to getting to know you better.

  • Thank you. It seems this site is a good place to be a member. Posts seem intelligent and meaningful. Friendly people.

  • I want to genuinely and sincerely wish you all the best of luck my friend.

    All my hopes and dreams for you

    Ken

  • I also research mine and my families medical conditions, actually I look up anything that I see or hear that interests me. My family doctor even listens to me if I have a different opinion than he does on my medicines, etc. He may check what I tell him, on the computer but, he listens. He knows that I am always going to check out anything new (with my health) and asks me what I think before he gives me his diagnosis.

  • Hi Sue like you I told my drs I had MS but they kept saying it was osteo arthritis. I did have this, and still do, but they were ignoring my balance (or severe lack of), pain everywhere, electric shock feelings in my leg and loss of use of my arm. I had to pay privately to have it officially diagnosed. Even then one dr didn't believe it. I changed surgeries! I hope you had a good Christmas. It always seems flat after the day. I had a lovely day with family but was totally exhausted for the next 2 days...but it was worth it. How are you? best wishes Lynn

  • Hello Susan219 and welcome aboard. Although no one wants to be on this boat ride, we are all in it together 😊

    I am so sorry that you got the news on your son's birthday 😞 l couldn't even imagine. And 16 is such a major yr. Geeze.

    Your not going to Rochester by any chance are you? You have discribed my Dr perfectly. As he has Cerebral Palsey also ☺ He is a great Neuro tho. Even if we don't always see eye to eye. 😅

    How are you doing on the Copaxon? Im on it also. Although l keep asking my dog if he wants to take the shot for me 😑😁😅 Hey it's worth a shot haha bad joke lol

    Anyway,welcome again! As you can tell we talk about pretty much anything and everything, but most importantly we support each other! We are all in this together after all😊

    Jes🎉

    ps hope you had a wonderful holiday!

  • I'm glad you found us, Sue. I have found helpful information here, and perhaps more importantly, encouragement and support. I'm sure you will, too.

  • I was Copaxone for tens years a few months ago my doctor change my medicince to Aubagio I have not any side effects from the new medicince. I like not giving me self shots however I hope all goes well for you

  • Just wanted to add to the welcome-ing, Susan219 - hope you get some good info and story-sharing from everyone here on our My MSAA Community. As Jesmcd2 said, we are all in this together :)

    - John, MSAA

  • I had a neuro in Canandaigua who would't listen to me, never wanted to give me answers only migraine meds. Good thing I moved to the Rochester area and now I have a great neuro who had me do another MRI and even went on to have me do several more tests. He definitely takes care of those with MS. I'm glad you're here, I'm sorry for the reason, but I do like your attitude towards advocating for yourself!

  • jennie62 do you go to Strong?

  • I think my neuro goes through Rochester General, but don't quote me on that. I see him late next month and I'll find out then.

  • That's cool your only a cpl hrs from me jennie62

    Jes🎉

  • I was on Copaxone and my neurologist, an Ms specialist tried me on Aubagio. I could not tolerate it. Stomach cramps and diarrhea. I am back on Copaxone. I don't like the shots but they are better than nothing. I can't take many of the other Ms drugs because of a heart valve replacement

  • My neuro is an MS specialist too. He only wants me to use Aubagio and he wants me to take Amprya for the (funny LOL) walk I have.

  • Hi Susan19 I'm Helen. I'm new here too but not new to MS. Let's all check in from time to time and help each other.

  • Hi Sue, what type of MS do you have and do you take other meds to assist in your MS treatment?

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