Relapses or just not feeling good??

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ozarker
Regular Member


Date Joined Nov 2013
Total Posts : 102
   Posted 4/30/2016 6:17 AM (GMT -6)   
I have a feeling that I have had many relapses over the years but didn't recognize them. I never reported all the bad stuff that has come along. So maybe I should have been in the hospital or at least in the doctor's office. I just kept it to myself and assumed I was just "not feeling good".

I can't count the number of times I felt like something was really wrong, but I just kept plugging away, doing the best I could.

Now I'm in a permanent "feeling bad" mode. It never gets any better any more. I used to be given 3 or 4 "good" days a month. Not anymore!

So keeping this from my neuro is probably the reason she thinks I've "burned out". I never thought of this before. My last appointment (last week) she never asked any questions and I never asked any or mentioned my problems, except for the fatigue.

Does anyone think I might be thinking right here? Could I have brought this worsening on myself by not complaining?
Marti
Diagnosed with MS 2001. Fibromyalgia, Graves Disease, IBS, Gastritis, Spondylosis, Degenerative Disc Disease, Sjogrens, Osteoarthritis, Osteoporosis, Tendonitis, Costochondritis. All the autoimmune diseases are attacking me. Taking the minimum of medications.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3556
   Posted 4/30/2016 10:59 AM (GMT -6)   
Why didn't you say something last week? Do you not have a doctor you can trust? It could be that your MS has transitioned from relapsing remitting to secondary progressive. This is typical for many who start with RRMS. The average range of transition to this progression is often between 15 and 20 years.

Perhaps you need to call and make a new appointment with your doctor. Please be honest with your doctor and explain that you only have 3/4 good days out of each month.

Remind me again, have you been taking a disease modifying medication? Often when one transitions to secondary progressive, medications are removed. Most current MS meds are only for RRMS.

You have a lot going on medically. It may be difficult to determine which of your diseases is causing you to feel so bad. Be persistent. You deserve a good quality of life.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

ozarker
Regular Member


Date Joined Nov 2013
Total Posts : 102
   Posted 4/30/2016 12:34 PM (GMT -6)   
I was taken off Copaxone a few years ago. It wasn't effective anymore and yes, she believed that I had moved on to SPMS at that time. Now she tells me my MS has "burned itself out". So you see... my neuro is not the best.

I saw her last week and she walked in with an agenda. All she did was quote a book about anxiety and insomnia. She never did any testing, never asked me any questions and did not order any tests. I was waiting in that clinic for nearly 4 hours and was so exhausted by the time I saw her that I just didn't care anymore. I let her ramble on and I got the hell out. I will NOT be going back to her.

So I'm on my own until I find a new doctor. Thanks for your concern.
Diagnosed with MS 2001. Fibromyalgia, Graves Disease, IBS, Gastritis, Spondylosis, Degenerative Disc Disease, Sjogrens, Osteoarthritis, Osteoporosis, Tendonitis, Costochondritis. All the autoimmune diseases are attacking me. Taking the minimum of medications.

healthymindandsoul
New Member


Date Joined Jul 2016
Total Posts : 3
   Posted 7/12/2016 6:00 AM (GMT -6)   
Tried Yoga or Pranayam as yet ? You must. Try Sudarshan Kriya from any of the art of living videos on youtube. For all I know, it keeps me happy and eliminates most back pains in one try. I hate medications too.
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