Hello Kim (@kcowan16) and welcome to Mayo Connect. I am sorry to hear of your recent diagnosis but I'm pleased to hear your of positive attitude. Attitude is so important when you are dealing with a chronic illness. As we look forward to getting to know you better, please share with us as you are comfortable doing so, what symptoms and diagnostic tests led to the MS diagnosis. How long has MS been suspected? Have you begun any treatment yet?

Teresa

@hopeful33250 Honestly had my suspicions of MS during my 3 flare up in January but the doctors at did not think it was MS. I had been experiencing flares since 2015. Some of my symptoms are needle and pins feelings, burning sensation, numbness, bowel issues, tightness in my chest like I had a tight girdle on (which I later found out is the "MS hug"), headaches, sensitivity to hot and cold and a host of other issues. My first flare lasted for 8 weeks before I started to get better.

During my last flare I realized I was not bouncing back to normal I took matters in my own hands and sort outside medical care. I have had so many test that it will make your head spin. What lead to the diagnosis was the brain and Cervical Spine MRI and spinal tap. I have started therapy and just completed my second dose.

There is not a day I am not in pain. I don't even know how a painless day feels anymore. But I try to stay active and move foward with life because I have too.

Kim @kcowan16

Yours has been quite a journey! Most of us who have neurological disorders go through a long period of time before we get to the diagnosis and treatment. There are a lot of new meds to keep MS symptoms (and sometimes progression) at bay, so this is a good time for MS patients. Physical therapy and exercise can be very therapeutic for pain and stiffness, especially water exercise - because you don't get overheated. Maybe it is too soon for that. Has your doctor recommended any physical therapy or exercise plan, yet?

Teresa

@hopeful33250 yes, exercise was recommended, so I joined a gym and will start aqua aerobics and will try Yoga soon.

Kim, Welcome my name is Rob and I can imagine what you feel like. I had some symptoms starting in Nov. 2015 and they got so bad I had to stop working in Jan. 2016. My neurologist found out I had neuropathy from an EMG and a nerve biopsy but she wanted me to go to specialists to find out why I had all these odd symptoms. I went to Mayo in July 2016 and again in Oct. and Dec. My last and hopefully final trip to Mayo was in March 2017 when I was diagnosed with primary progressive MS. This is after having fibromyalgia for 20 years, seizures for 10 years, diabetes for 5 years and 5 car accidents in the last 12 years. After one car accident they found out I had sleep apnea so now I use a CPAP and after one they found out I had borderline narcolepsy. After one I blacked out so they think I had a seizure but who knows. I am numb from my hips to my toes and my hips are stiff constantly. I have blurred vision in one eye and I get a lot of headaches(I get Botox for migraines). I get shooting pain to my fingers and my back and neck hurt constantly . Sometimes my lower back feels numb and my neck is all knotted up. My legs always feel cold but my upper body is sweaty because a medicine I took for my hyperhydrosis I had to stop because its side effect was cognitive impairment and I have had memory loss for a couple of years. I can't sleep with the covers on because I sweat so I don't use covers and I have to sleep with a fan. All my clothes are X-temp, Dri-fit or Cool temp. I used to love the outdoors and was outside in the vegetable or flower gardens or working in the garage. Now I go outside and work for 45 minutes and I have to come in and rest for 2-3 hours and then I can work for another 45 minutes and I am wiped out and I can barely move my arms without the muscles shooting pain everywhere. Oh yeah it is hard for meto sleep as you can seethe time of this. Talk to you later, hopefully.

Wow! Reading what you published here is like looking in the mirror! But I HAVE NOT been diagnosed with MS! (Yet!)
My life is the same. Including the not knowing what it feels like to NOT have pain. I always snicker at the medical appts/tests and procedures when they ask you "do you have any pain?" Ha ha ha!! I NEVER get to say no. Okay, if I'm just waking up from maybe yes!
But as for this keep n keeping on. This old world will get better some day. The Bible promises this!
Cyber Hugs to you!

PS.. I've been to Mayo in Scottsdale. AZ in 2010. If I can I'll make an appt there for this Winter

Hello Darlia @darlia

Nice to hear from you.
I am glad to hear that Mayo in Scottsdale is familiar to you. Will you keep us posted and let us know how you are feeling?

Teresa

Hi Teresa,

I posted last night on my FGFR3 post on my latest thoughts. Thanks. Darlia