Waiting for diagnosis
Hi all, apologies in advance for the long post ...
My journey started two years ago, although i had some weird things before that. About March 2021 I had been waking in the morning feeling like utter crap for several weeks, with a headache and elevated heart rate. One morning my husband suggested the ER, and i accepted. I told them what I was experiencing, and the ER doc ordered a brain CT.
After that, and after it was read by a radiologist, he came back in and said there was something unusual and an MRI was being recommended. The doctor said that rarely happens in the ER, so he ordered an MRI. Long story short, I had assymetrical ventricles and multiple white matter lesions. I went to a neurologist and had to wait about the longest month of my life for the appointment. I saw a PA in neurology, and I read only good things about him online. He specialized in MS and migraines. During the appointment, he put me through my paces, literally. Had me walk around different ways and touch my nose, etc. I had emailed my symptom list ahead, and he thanked me for that, but he didn't discuss it or the brain images with me. He diagnosed me with migraines of various types and put me on a preventative, Emgality.
I felt relieved, although a little skeptical, but I had a diagnosis. I believe I do have migraines, and the Emgality helped. Eventually, he left practice to go into research and I found a new neurologist, an MD. We had our first visit, but for some reason I didn't think to bring the disk of the scans to her. ( She works in a different hospital system) FF 6 months to a couple weeks ago for my follow-up and I brought the disk. She looked at it and asked me if anyone had ever talked to me about it. She showed me the images and said there were way more lesions than she expected to see from migraines alone, and also in different places of the brain. She was also concerned about my assymetrical ventricles and especially the larger one. She said I need another MRI. She said if it's not migraine, it's MS, but her intent wasn't to scare me. I told her it did not, and I want to know what's wrong.
Now, I'm waiting until May 17 for the MRI. I had never told her about all my past weird things and all my pain issues because I just chalked them up to aging (I'm 47). I have had my general doctor sort of blow off some of my stuff, so I've kept it to myself, thinking maybe everyone has random shooting pains in their limbs, and are exhausted in the afternoons, and they just suck it up and I'm being a weenie, etc. So, yesterday, I sent my new doc the list I made two years ago with some updates.
I still have a fear of being perceived as Chicken Little, but I hope her concern warrants me thinking there is something really wrong with me. I'm not sure why I am posting this, except for maybe some advice. Am I handling this correctly, and was anyone else told their problem was migraines before getting their real diagnosis? And does anyone have any input on the ventricle situation?
Thanks for your time reading this post.
I'll post my symptom list as I shared with my doctor. She did reply and said really the MRI is what will decide where we go next.
Infrequently:
Sensation of dropping as if in an elevator or roller coaster. Happened one time while just sitting on the couch. Years ago.
Forgetfulness about something that just happened Example: Poured myself a cup of coffee, went to sit down and there was coffee there already that I didn't remember getting. Never did remember it. Similar episodes are becoming more frequent.
Sudden, semi-intense electrical shock like pain in right leg lasting several seconds. Leg was painful and difficult to walk on the rest of the day (approx summer of 2019) Have experienced less intense sensations in same leg since then. (Same leg currently experiencing pain and weakness)
Felt like eyes weren't working together or focusing together, momentarily.
A gray curtain dropped down and obscured part of my vision, momentarily.
Loss of sensation/partial numbness in forehead. 4/11/2021
Difficulty getting correct eyeglasses prescription. 2020
Experienced extreme dizziness, where I felt like an invisible force was pulling me to one side, could not walk or function for several minutes. Had to lay down.
Somewhat frequently:
Restless legs and allover restless feeling like I need to stretch when trying to fall sleep or being otherwise still. No dietary or medicinal cause. (This has improved somewhat since being prescribed ropinirole and gabapentin.) Also at times I feel like I have a barely perceptible tremble/tremor. Can't see anything, just a sensation.
Feel mentally foggy. Difficulty mentally organizing tasks and often get distracted and forget what I am doing.
Anxiety.
Frequent or constant:
Lightheaded, spacey feeling.
Feeling of pressure in my head, not pain, just pressure and difficulty thinking.
Frequent urination, especially at night, seems improved by ropinirole.
Constipation. Many years. And I recently seemed to have developed not always feeling the urge, but if I try, I can go.
Ringing in the ears. Constant since about January 2021. Never stops.
Stiffness and soreness. Feel like I am 80 when I stand up.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
My journey started two years ago, although i had some weird things before that. About March 2021 I had been waking in the morning feeling like utter crap for several weeks, with a headache and elevated heart rate. One morning my husband suggested the ER, and i accepted. I told them what I was experiencing, and the ER doc ordered a brain CT.
After that, and after it was read by a radiologist, he came back in and said there was something unusual and an MRI was being recommended. The doctor said that rarely happens in the ER, so he ordered an MRI. Long story short, I had assymetrical ventricles and multiple white matter lesions. I went to a neurologist and had to wait about the longest month of my life for the appointment. I saw a PA in neurology, and I read only good things about him online. He specialized in MS and migraines. During the appointment, he put me through my paces, literally. Had me walk around different ways and touch my nose, etc. I had emailed my symptom list ahead, and he thanked me for that, but he didn't discuss it or the brain images with me. He diagnosed me with migraines of various types and put me on a preventative, Emgality.
I felt relieved, although a little skeptical, but I had a diagnosis. I believe I do have migraines, and the Emgality helped. Eventually, he left practice to go into research and I found a new neurologist, an MD. We had our first visit, but for some reason I didn't think to bring the disk of the scans to her. ( She works in a different hospital system) FF 6 months to a couple weeks ago for my follow-up and I brought the disk. She looked at it and asked me if anyone had ever talked to me about it. She showed me the images and said there were way more lesions than she expected to see from migraines alone, and also in different places of the brain. She was also concerned about my assymetrical ventricles and especially the larger one. She said I need another MRI. She said if it's not migraine, it's MS, but her intent wasn't to scare me. I told her it did not, and I want to know what's wrong.
Now, I'm waiting until May 17 for the MRI. I had never told her about all my past weird things and all my pain issues because I just chalked them up to aging (I'm 47). I have had my general doctor sort of blow off some of my stuff, so I've kept it to myself, thinking maybe everyone has random shooting pains in their limbs, and are exhausted in the afternoons, and they just suck it up and I'm being a weenie, etc. So, yesterday, I sent my new doc the list I made two years ago with some updates.
I still have a fear of being perceived as Chicken Little, but I hope her concern warrants me thinking there is something really wrong with me. I'm not sure why I am posting this, except for maybe some advice. Am I handling this correctly, and was anyone else told their problem was migraines before getting their real diagnosis? And does anyone have any input on the ventricle situation?
Thanks for your time reading this post.
I'll post my symptom list as I shared with my doctor. She did reply and said really the MRI is what will decide where we go next.
Infrequently:
Sensation of dropping as if in an elevator or roller coaster. Happened one time while just sitting on the couch. Years ago.
Forgetfulness about something that just happened Example: Poured myself a cup of coffee, went to sit down and there was coffee there already that I didn't remember getting. Never did remember it. Similar episodes are becoming more frequent.
Sudden, semi-intense electrical shock like pain in right leg lasting several seconds. Leg was painful and difficult to walk on the rest of the day (approx summer of 2019) Have experienced less intense sensations in same leg since then. (Same leg currently experiencing pain and weakness)
Felt like eyes weren't working together or focusing together, momentarily.
A gray curtain dropped down and obscured part of my vision, momentarily.
Loss of sensation/partial numbness in forehead. 4/11/2021
Difficulty getting correct eyeglasses prescription. 2020
Experienced extreme dizziness, where I felt like an invisible force was pulling me to one side, could not walk or function for several minutes. Had to lay down.
Somewhat frequently:
Restless legs and allover restless feeling like I need to stretch when trying to fall sleep or being otherwise still. No dietary or medicinal cause. (This has improved somewhat since being prescribed ropinirole and gabapentin.) Also at times I feel like I have a barely perceptible tremble/tremor. Can't see anything, just a sensation.
Feel mentally foggy. Difficulty mentally organizing tasks and often get distracted and forget what I am doing.
Anxiety.
Frequent or constant:
Lightheaded, spacey feeling.
Feeling of pressure in my head, not pain, just pressure and difficulty thinking.
Frequent urination, especially at night, seems improved by ropinirole.
Constipation. Many years. And I recently seemed to have developed not always feeling the urge, but if I try, I can go.
Ringing in the ears. Constant since about January 2021. Never stops.
Stiffness and soreness. Feel like I am 80 when I stand up.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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