Any Experience with Cleveland Clinic?
Posted: Fri Feb 17, 2017 9:12 am
Hi everyone!
I posted here a month or so ago as my "do I have MS?" journey began.
First post: http://www.thisisms.com/forum/undiagnos ... 28525.html
As all of you know, there is a lot that goes on while trying to find out an answer. To condense it:
4 years ago, vertigo, dizziness, feeling like I might pass out, leg and foot cramping. At that time, did not make the connection but now I wonder.
This past year, the vertigo and dizziness revisited. Seems to be agitated in places where it is warm (office, basketball games, stores). Those are also places with flourescent lighting and/or lots of information to process at once. Haven't figured out which is the trigger. This time, numbness accompanies these episodes. They started out once in August and November and then with a vengeance in December, every couple of days. We're now in February and the numbness remains in my hands and feet. Sometimes in my arms and legs. (other assorted symptoms are neck stiffness, dull headaches, right sided twitching, my eyes flutter when I look down to focus on something close, frequent urination moreso at night, some bowel incontinence, I'll spare those details)
I have had an MRI w/ contrast of my brain and c-spine. 10 white spots in frontal lobe. I've also had CT angiograms of my head and neck, both negative. (Neuro wanted to rule out anything vascular).
Initial neuro exam was mostly normal except for a positive Romberg, slight issue with gait and left sided weakness.
Blood work is all unremarkable EXCEPT vitamin d which was 8. Severely low. I've been taking 50,000u weekly for the past five weeks. I've noticed no difference in symptoms yet.
Neuro also prescribed Verapamil, a calcium channel blocker, on the off chance that my symptoms were complex migraines. After four weeks of it, no difference, either.
Endured the spinal tap two weeks ago today. It wasn't as bad as I had prepared myself for. A week later, my results came back normal. I have not seen the numbers. When neuro called to give me the results, they asked about how the Verapamil was doing for me. I shared that I felt there was no difference. Nurse recommended doubling it. Let me say that Verapamil is a blood pressure medication and my blood pressure is normal. Doubling it would most likely render me useless as the 180mg they currently prescribed cause me to sleep A LOT!!!
All this to say, upon the urging of many friends and family, I called the Cleveland Clinic. I live in Central Pennsylvania and the general rule around here is if you want answers, you go out of town for medical care. A coworker of my husband had a negative lumbar puncture AND MRI's locally. She went to Johns Hopkins where they have more advanced equipment and they found several lesions on her c-spine that were missed locally.
Anyone here have any experience with Cleveland Clinic? Or with going to an MS Specialist and receiving a diagnosis there? Any advice or thoughts appreciated.
I posted here a month or so ago as my "do I have MS?" journey began.
First post: http://www.thisisms.com/forum/undiagnos ... 28525.html
As all of you know, there is a lot that goes on while trying to find out an answer. To condense it:
4 years ago, vertigo, dizziness, feeling like I might pass out, leg and foot cramping. At that time, did not make the connection but now I wonder.
This past year, the vertigo and dizziness revisited. Seems to be agitated in places where it is warm (office, basketball games, stores). Those are also places with flourescent lighting and/or lots of information to process at once. Haven't figured out which is the trigger. This time, numbness accompanies these episodes. They started out once in August and November and then with a vengeance in December, every couple of days. We're now in February and the numbness remains in my hands and feet. Sometimes in my arms and legs. (other assorted symptoms are neck stiffness, dull headaches, right sided twitching, my eyes flutter when I look down to focus on something close, frequent urination moreso at night, some bowel incontinence, I'll spare those details)
I have had an MRI w/ contrast of my brain and c-spine. 10 white spots in frontal lobe. I've also had CT angiograms of my head and neck, both negative. (Neuro wanted to rule out anything vascular).
Initial neuro exam was mostly normal except for a positive Romberg, slight issue with gait and left sided weakness.
Blood work is all unremarkable EXCEPT vitamin d which was 8. Severely low. I've been taking 50,000u weekly for the past five weeks. I've noticed no difference in symptoms yet.
Neuro also prescribed Verapamil, a calcium channel blocker, on the off chance that my symptoms were complex migraines. After four weeks of it, no difference, either.
Endured the spinal tap two weeks ago today. It wasn't as bad as I had prepared myself for. A week later, my results came back normal. I have not seen the numbers. When neuro called to give me the results, they asked about how the Verapamil was doing for me. I shared that I felt there was no difference. Nurse recommended doubling it. Let me say that Verapamil is a blood pressure medication and my blood pressure is normal. Doubling it would most likely render me useless as the 180mg they currently prescribed cause me to sleep A LOT!!!
All this to say, upon the urging of many friends and family, I called the Cleveland Clinic. I live in Central Pennsylvania and the general rule around here is if you want answers, you go out of town for medical care. A coworker of my husband had a negative lumbar puncture AND MRI's locally. She went to Johns Hopkins where they have more advanced equipment and they found several lesions on her c-spine that were missed locally.
Anyone here have any experience with Cleveland Clinic? Or with going to an MS Specialist and receiving a diagnosis there? Any advice or thoughts appreciated.
