Being diagnosed last yr this is still very new to me but I see know I have had this for some time now.
28 yrs ago I was as diagnosed with retroperitoneal fibrosis witch is a very rare disease with inflammation and scarring was given 3 to 4 months to live woke up after my first operation with the colostomy was put on very high doses of prednisones. The Prednisones stop the spreading which actually save my life after two years I had my Colostomyto reversed
The years since then every time I wasn’t feeling well I always blamed it on my retroperitoneal fibrosis
12 yr ago I see now I was having a attack with MS could barely walk and the fatigue was extremely bad thinking the fibrosis was back then with in two weeks symptoms were gone but over the yrsI have always had bladder issues and slight vision problems and slight vertigo. Being self employed I was always fortunate enough to takeoff for work when I wasnt feeling good. Again looking back and I gauge my kids age on this. My first attack was when my son was just born. It’s was severe vertigo up on a 20 foot ladder. Over the yrs I have had certain instances that stand out now I see it was related to MS
This all came to a bottle neck 2yrs meaning I must of had a attack badder-blurred vision-extreme fatigue-back pain. Thinking fibrosis again. Seen over 20 doctors and each with ther own test having to explain myself every time. Ended up in the hospital was told I have CIPD and I would be a person of interest with two rare diseases. Had to stay another week For 5 treatments of IVIG. At this time I don’t have insurance was told what I have is serious and I should look into insurance. My girlfriends of 5 yrs now my wife got married. Made an appointment with the Doctor Who diagnosed me with CIPDthey wanted to do another five units of IVIG. And wanted to set me up with infusions Steroids/prednisone. At 250k per 6 months. I had infusion centers calling all times of the day. Oh this was my second neurologist both miss diagnosed me the first one said I had Gillion beret syndrome. Other doctors said I need glasses/ pre-diabetic/ect..
My wife heard of the cleavland Clinic so we made an appointment there
She did an MRI-VEP-Spinal tap. All with in one month. Confirmed MS
I have no clue what those other doctors were thinking. After seeing and now understanding my MRI and lesions and VEP test I have had this for over 25yrs. My MRI confirms this
Alls Cleveland Clinic can do is they gave me a list of meds that I have to choose from starting at 5k per month and infusions at 250k 6months. I am a trust but verify kinda guy. And I see so much misinformation out there. Know I see we all with MS are liken to snowflakes no two are the same