Newly Diagnosed with MS

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I have had four back Surgeries since March of 2021, I have had a lot of Spinal Stenosis. I have been incontinent most of my life, without any sensory awareness. So I am always wet generally, I had not been wet in over 40 hours so, I was experiencing retention. My PC sent me to my Neurosurgeon and she said I needed surgery that night. In the previous MRIs they found two lesions, the first time they began discussing the MS was after my two surgeries in August. So I have now been diagnosed with Progressive MS which is one of the bad ones. The Neurologists at The Cleveland Clinic, put me through the wringer of tests, finally got the diagnosis. So this kind of sucks! Going to be learning a whole lot about this new chapter. Anyone else have MS?

 

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I am sorry to hear about your diagnosis

 

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Very sorry to hear of your diagnosis. We share plenty here from or own experiences and diagnosis but just remember each human is unique as such there is no one size fits all if others share the medical history or medical treatment.
We hope you will find some comfort here

 

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I have a friend who has chronic progressive MS. Through her, I've met two other people with MS. It sucks to get that diagnosis, but they manage to keep a positive attitude. They fight depression by keeping socially connected and making new friends. Maybe you can find a support group in your area. I wish you all the best.

 

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Hi Wbwayne11

I have been diagnosed with relapse remitting MS. Granted that’s the best MS diagnosis one could have but my final mri scan prior to my diagnosis it looked like a literal Christmas tree as I soon many lesions throughout my brain including all areas and down my spine. The doctors didn’t believe I could even speak. So considering where I came back from so to speak I can truly respect this disease in that I could barely walk and currently I have no issues.

Curious if you are going to start a disease modifying treatment. The one that comes up in my head for primary progressive is ocrevus. Not sure if you have looked into that treatment?

Since my formal diagnosis from Dec 23, 2016; starting Q1/Q2 2017 I have been taking tecfidera and haven’t had a notable relapse at least to my conscious knowledge and to my neurologist point of view. Granted I have totally changed my life, diet, take approximately 50 pills/supplements daily, and on 12 prescriptions. I am just very fortunate my body likes prescriptions which I understand isn’t normal so I am not complaining. The other major thing I did was tons and tons of counselling to change my attitudes from generally negative and pessimistic to much more positive and try to enjoy life and not let it pass me by. Of course I went through a major depressive state shortly after my diagnosis and that took an extreme amount of self will to get better abs change my overall life and outlooks on life and just literally slow down to the speed of life as opposed to just let life pass me by.

I am very sorry for you with a diagnosis of primary progressive ms. I hope you have some terrific results with the new many Disease modifying treatments out nowadays. Much more promising as compared to 30 years ago. Wish you all the best and any questions you may have just feel free to post or drop me a pm.

With love and whatever healing I may energetically provide you. Sincerely

Jason

 

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I am starting Ocrevus, I still have to have a cervical neck fusion, my MS Dr. Deciding whether to do I can start it prior to surgery, I messaged her today asking to start the first dose as surgery is not until April. I also hear that insurance likes to deny.

Wayne

 

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Glad to hear from you Wayne. All we can do is cheer you on as you find good MS groups and navigate incontinence