Here we go again
Hi all-
Seven years ago I got very sick and MS was suspected (I had fatigue, foot drop, tremors, lots of muscle skeleton pain, very exaggerated refluxes.)
MRIs on brain and spine were negative. Was diagnosed with fibromyalgia. Two years later I tested positive for Lyme Disease, was treated for several months, quit a stressful career and started feeling better.
Fast forward to this winter and symptoms have reoccurred. I’ve had more muscle spasms to the point where my calf will cramp up for a few days making it very uncomfortable to walk.
I’ve also had vision changes and learned I have enlarged optic nerves and have glaucoma in my left eye with some nerve damage. I’ve had some changes in my bladder control— to the point where I have lost total control on a couple of occasions.
My doctor had long suspected that I’ve had MS and has ordered another set of MRIs. I am dreading what they will cost.
My blood work showed an elevated CRP and my platelet level has always been higher than normal— my doctor says this may also be an MS indication.
I must say that I function pretty well aside from pain and muscle issues. Exercise helps a lot!
If they do find lesions and diagnose me— would it likely be Relapsing MS? What is the treatment regiment for this type?
I have four kids and lots of expenses and am hoping the MRI is clean. On the other hand— if it’s not MS— what else is it?
I am tired of this space of not knowing and don’t want to throw money at tests that won’t give me a diagnosis.
Thanks for any input you can offer!
Hi
. The wait must really be stressing you out. I hope you don't have MS, but if you do, please know that it is very possible to live fully with treatment, even as a mother to four. Every MS journey is unique, so you can’t study someone else’s and assume yours will be the same. Try not to do that. The uncertainty of MS can be hard to live with, but it can also give you lots of hope. We are not medical experts, but given your pattern of symptoms, I would guess that if you are diagnosed with MS, yours will be labeled RRMS. There are lots of good medications that can help slow the progress and most drug companies have financial assistance programs with generous guidelines that will cover all or most of the costs beyond insurance. For your MRI, you can apply for reimbursement through the MRI Access Program of the Multiple Sclerosis Association of America even if it turns out you do not have MS Here is a link: https://mymsaa.org/msaa-help/mri/. I hope that helps ease some of your financial stress. I would like to share a few other articles with you. This article is about health conditions that mimic MS and should be ruled out: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. This article is about treatments for MS: https://multiplesclerosis.net/treatment. Treatment continues to improve and there are many other medications and therapies in the pipeline. Exercise is super important for MS, so I am glad you are working out when you can. We have lots of advocates and members here who are successfully parenting with MS, including one whose four children include identical triplets. If this is MS, you already have been living with it for years. You just didn’t know it and you didn’t have any treatment. Though I know it’s scary, a diagnosis can be a good thing. You will finally know for sure what you are dealing with and you can work to slow its progression. Please know we are here for you as you go through all this and please keep us posted. I will be thinking of you. Sending a boatload of gentle hugs your way. – Lori (Team Member) Thank you so much Lori— the links are really helpful; especially in regards to the MRI costs.
Thank you again!
