I have been having issues with on going symptoms since last Oct. It started with blurry vision which was then discovered from optic lesions on my eye, followed by horrific migraines, numbness/tingle feeling on the side of my face, memory and verbal issues.
My CP showed bands, however my blood showed bands as well. MRIs done every six months so no lesions.
My eye sight is still blurry and the headaches are awful. Some new symptoms include issues with sleeping, this electric rod feeling in my arm shooting down, extremely tired and stiff/painful neck. I can't work due to one hour on the computer makes my eye hurt, let a alone 8 hours non stop computer work .
My Neuro has tried three bouts of steroids ( which didn't help) and has still not attempted any MS meds and states that without lesions she can't diagnose. ( Which I find strange seeing I have read many people with clear MRIs with MS symptoms.
I am just looking for advice on what and where to go from here.
I live in AZ, and I have heard over and over that there are not a lot of great neuros in this area.
I had one hemo. doc recommend to go to USD Med. Center....
Any advise? Any recommendations for doctors, centers, how to "advocate" for such issues.
Thanks
MS symptoms, no lesions on brain, help...
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lucediamore
- Newbie
- Posts: 3
- Joined: Mon Jul 21, 2014 4:03 pm
Re: MS symptoms, no lesions on brain, help...
Hey! I'm sorry to hear about your MS going undiagnosed.
I also live in AZ and see a neurologist who is an expert in MS over in PHX. If you're interested in perhaps inquiring to see if you can see him, let me know and I'll give you his name.
Otherwise, here's my experience in getting diagnosed:
MS is really hard to diagnose because there is no test that says, "Yep, you're MS positive." What the doctors have to do is rule out other possible causes in order to confirm an MS diagnosis. I had to have 3 relapses before I was diagnosed. I had two times where my left leg became numb up to my hip and I was limping, and my third was double vision. (In retrospect, I was having symptoms when I was as young as 14! But those never could have been diagnosed).
Throughout the 3 episodes, I received steroids, which clearly weren't "curing" my symptoms. I had numerous MRIs, which were brain and spinal cord, plus the dye. Also, I had a few spinal taps.
Have you had any spinal taps yet?
I really hope you're able to get your MS diagnosed soon. The sooner it is and the sooner you start therapy, the better off you'll be. I was diagnosed when I was 17 and am now 21. Throughout my 4 years living with MS, I've really realized you have to be your own advocate.
Good luck to you.
I also live in AZ and see a neurologist who is an expert in MS over in PHX. If you're interested in perhaps inquiring to see if you can see him, let me know and I'll give you his name.
Otherwise, here's my experience in getting diagnosed:
MS is really hard to diagnose because there is no test that says, "Yep, you're MS positive." What the doctors have to do is rule out other possible causes in order to confirm an MS diagnosis. I had to have 3 relapses before I was diagnosed. I had two times where my left leg became numb up to my hip and I was limping, and my third was double vision. (In retrospect, I was having symptoms when I was as young as 14! But those never could have been diagnosed).
Throughout the 3 episodes, I received steroids, which clearly weren't "curing" my symptoms. I had numerous MRIs, which were brain and spinal cord, plus the dye. Also, I had a few spinal taps.
Have you had any spinal taps yet?
I really hope you're able to get your MS diagnosed soon. The sooner it is and the sooner you start therapy, the better off you'll be. I was diagnosed when I was 17 and am now 21. Throughout my 4 years living with MS, I've really realized you have to be your own advocate.
Good luck to you.
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lucediamore
- Newbie
- Posts: 3
- Joined: Mon Jul 21, 2014 4:03 pm
Re: MS symptoms, no lesions on brain, help...
Thanks so much for your input, I would love to get the name of the Doc, yes I finally had to stand up and question why we were not trying any of the meds. the Neuro I am seeing now if FINALLY going to start me on Copaxo , you have any insight to that drug?
As you, I have had three rounds of steroids that did nothing. I am on a bunch of nerve meds that are SUPPOSED to help with the symptoms but have not. Yes I had a spinal tap, which DID show bands.
I am hoping for some difference with copaxo.
Thanks
As you, I have had three rounds of steroids that did nothing. I am on a bunch of nerve meds that are SUPPOSED to help with the symptoms but have not. Yes I had a spinal tap, which DID show bands.
I am hoping for some difference with copaxo.
Thanks
Re: MS symptoms, no lesions on brain, help...
Of course!
My neurologist is Dr. Hendin. He's really a great doctor because he's very informed and involved in current MS studies.
I was taking Copaxone, but it failed for me. I was started on it when I was first diagnosed and I still had a couple exacerbations while taking the drug. I take Tysabri now and it's my understanding that a patient has to fail a therapy before starting Tysabri. I hope Copaxone works well for you! As for symptom control, I don't take many other meds for my MS, expect Uribel for bladder and vitamin D supps. bc MS patients generally have very low vitamin D levels. (for some reason no one knows)
Living with MS is seriously a life altering event... even if you haven't noticed it yet, it will completely 360 the way you live and view life. If you have any other questions, feel free to ask me... I wish I would have had someone to talk to when I was first diagnosed, ya know?
My neurologist is Dr. Hendin. He's really a great doctor because he's very informed and involved in current MS studies.
I was taking Copaxone, but it failed for me. I was started on it when I was first diagnosed and I still had a couple exacerbations while taking the drug. I take Tysabri now and it's my understanding that a patient has to fail a therapy before starting Tysabri. I hope Copaxone works well for you! As for symptom control, I don't take many other meds for my MS, expect Uribel for bladder and vitamin D supps. bc MS patients generally have very low vitamin D levels. (for some reason no one knows)
Living with MS is seriously a life altering event... even if you haven't noticed it yet, it will completely 360 the way you live and view life. If you have any other questions, feel free to ask me... I wish I would have had someone to talk to when I was first diagnosed, ya know?