MS-like symptoms after shingles
Posted: Tue Feb 14, 2017 2:41 pm
Hi everyone. This is my first post on any MS forum.
I was diagnosed with shingles 2 years ago. In the days preceding the shingles outbreak, I experienced numbness on the side of my face where the shingles eventually appeared. I also had terrible looking stool, headaches, joint pain, weakness (difficultly walking up stairs), brain fog, dizziness (not extreme, like I'm walking on a boat), cognitive difficulty, and incessant muscle twitching (from muscles I didn't even know I had). I was treated 3 days after my shingles appeared (I thought it was acne initially) with antibiotics and antivirals. The shingles themselves went away, but the symptoms persisted for another 3 weeks.
Then, 2 months later the symptoms came back! I went in for an MRI (w/ and wo/contrast) and results were normal. Over the year after the shingles outbreak, I had an episode every ~2 months of these same symptoms. At the 1 year mark I saw two neurologists. They reviewed my last MRI and confirmed it was normal. They examined my optic nerve for lesions and found none. I passed routine clinical strength/walking tests.
Then at the 1.5 year mark the symptoms came back again. This time with extreme back pain around my upper spine. Once during the pain, I felt an intense burning sensation starting from my spine and radiating outward. Lasted just a few seconds. The back pain spread up to my head and throat (was difficult to turn my neck) throughout the next 2 days. It vanished after a few days.
I had another MRI done and it was normal. Saw an MS specialist and he said that it's likely not MS: 2 clear MRIs one year apart after having symptoms for 1.5 years is a good sign. He was reluctant to do a lumbar puncture because he doesn't think it would show results. I took a cognitive test which came back normal. But man if I took that test just a week earlier when my symptoms were really flaring, I'm sure I would have failed (for context, I'm a statistics PhD student at an ivy institution and I was having difficulty subtracting).
I've had two more episodes since then. Approaching my 2-year mark since shingles outbreak. My last flare up of symptoms came with the usually symptoms plus tingling/stinging on the bottom of my feet and periodic nausea. This was new. Definitely not strong, but annoying.
So far a lot of my symptoms fit MS. Even though I've been told I don't have it, I'm still worried. What if I have it but it's just not detectable yet. I think these doctors get a biased sample of patients: patients who's disease is sufficiently progressed to be detectable with one of their tests. When someone comes in with early disease, they just tell them it's stress because the symptoms aren't "severe" enough.
My two operating theories are 1) it's MS - either caused by shingles or the MS itself caused shingles. 2) It's some kind of post-viral fatigue syndrome/recurrent benign inflammation of the CNS resulting from my shingles outbreak. There are similar shingles complications - called mollaret's meningitis. I had a nervous system infection then proceed to have nervous system symptoms. It's either coincidence or related. I strongly suspect they're related, especially since the first occurrence of these symptoms coincided with the shingles. My last neuro didn't say anything conclusive but thinks it's aftershocks from the shingles. But I cannot find any literature on this. Even Mollaret's or benign recurrent inflammation of the CNS is usually accompanied by a fever. But I don't get fevers.
Sorry for this very long ranting post. I don't even really have a question. I'm just so frustrated. Doctors are hesitant to make a diagnosis without clinical evidence and family members don't want to believe it could be MS - so they just tell me it's stress.
In the end I feel...isolated. I'm not even sure it's MS. I just want to know what is wrong and there's no one who will even try to struggle/think through this with me. I suppose I just want reactions from people who know what this struggle is like. I'm almost tearing up just typing this.
I was diagnosed with shingles 2 years ago. In the days preceding the shingles outbreak, I experienced numbness on the side of my face where the shingles eventually appeared. I also had terrible looking stool, headaches, joint pain, weakness (difficultly walking up stairs), brain fog, dizziness (not extreme, like I'm walking on a boat), cognitive difficulty, and incessant muscle twitching (from muscles I didn't even know I had). I was treated 3 days after my shingles appeared (I thought it was acne initially) with antibiotics and antivirals. The shingles themselves went away, but the symptoms persisted for another 3 weeks.
Then, 2 months later the symptoms came back! I went in for an MRI (w/ and wo/contrast) and results were normal. Over the year after the shingles outbreak, I had an episode every ~2 months of these same symptoms. At the 1 year mark I saw two neurologists. They reviewed my last MRI and confirmed it was normal. They examined my optic nerve for lesions and found none. I passed routine clinical strength/walking tests.
Then at the 1.5 year mark the symptoms came back again. This time with extreme back pain around my upper spine. Once during the pain, I felt an intense burning sensation starting from my spine and radiating outward. Lasted just a few seconds. The back pain spread up to my head and throat (was difficult to turn my neck) throughout the next 2 days. It vanished after a few days.
I had another MRI done and it was normal. Saw an MS specialist and he said that it's likely not MS: 2 clear MRIs one year apart after having symptoms for 1.5 years is a good sign. He was reluctant to do a lumbar puncture because he doesn't think it would show results. I took a cognitive test which came back normal. But man if I took that test just a week earlier when my symptoms were really flaring, I'm sure I would have failed (for context, I'm a statistics PhD student at an ivy institution and I was having difficulty subtracting).
I've had two more episodes since then. Approaching my 2-year mark since shingles outbreak. My last flare up of symptoms came with the usually symptoms plus tingling/stinging on the bottom of my feet and periodic nausea. This was new. Definitely not strong, but annoying.
So far a lot of my symptoms fit MS. Even though I've been told I don't have it, I'm still worried. What if I have it but it's just not detectable yet. I think these doctors get a biased sample of patients: patients who's disease is sufficiently progressed to be detectable with one of their tests. When someone comes in with early disease, they just tell them it's stress because the symptoms aren't "severe" enough.
My two operating theories are 1) it's MS - either caused by shingles or the MS itself caused shingles. 2) It's some kind of post-viral fatigue syndrome/recurrent benign inflammation of the CNS resulting from my shingles outbreak. There are similar shingles complications - called mollaret's meningitis. I had a nervous system infection then proceed to have nervous system symptoms. It's either coincidence or related. I strongly suspect they're related, especially since the first occurrence of these symptoms coincided with the shingles. My last neuro didn't say anything conclusive but thinks it's aftershocks from the shingles. But I cannot find any literature on this. Even Mollaret's or benign recurrent inflammation of the CNS is usually accompanied by a fever. But I don't get fevers.
Sorry for this very long ranting post. I don't even really have a question. I'm just so frustrated. Doctors are hesitant to make a diagnosis without clinical evidence and family members don't want to believe it could be MS - so they just tell me it's stress.
In the end I feel...isolated. I'm not even sure it's MS. I just want to know what is wrong and there's no one who will even try to struggle/think through this with me. I suppose I just want reactions from people who know what this struggle is like. I'm almost tearing up just typing this.
stats, love it. i spent my whole dx process arguing 'how can you guys assume that i, as weird a one off as i am compared to average joe, can reasonably be pigeonholed into this situation according to your stats-based dx process' 
