Aa
Do I need another opinion?
This might be long, so please bear with me. I'm at a crossroads and I'm not sure what to do. My symptoms started when I was 24-25 years old. I'm now 32. An instructor with MS noticed me tripping and cancelling lessons due to fatigue, and she suggested I see a neurologist. I did, and she did some blood work and an MRI, all of which turned out to be normal. I disregarded the symptoms and put it down to stress since I was close to graduating college. My symptoms came and went in waves, but I still ignored them.
Fast forward to two years ago. I was reexamined and found to have some signs that were abnormal: hyperreflexia in upper and lower extremities, Babisnki upgoing in both feet, and clonus in my ankles. I also experience L'hermitte's sign when I flex my neck. Over the past few years, I've developed some other troubling symptoms. My tripping has gotten worse and I often fall into walls because my balance is terrible. I get horrible numbness and tingling in my hands and feet that last for hours. I don't know if this qualifies as incontinence, but sneezing or laughing can cause me to empty my bladder even if I don't have the urge to go. Being in the heat too long blurs my vision and causes vertigo. My muscles twitch, even my whole torso which will jerk one way or another when I'm sitting on the sofa or lying in bed. I've had difficulty swallowing, but it has gotten worse. A few weeks ago it took me three hours to swallow a piece of carrot. My newest symptom is hand weakness that causes me to drop things. They feel heavy like I can't even lift them up.
I've seen two neurologists for this, neither of whom think I have MS. I can't say I blame them since my MRIs have only come back with 2 non-specific lesions, only 1 is paraventricular. I had an LP done a week ago that showed no oligoclonal bands. I have no physical evidence of MS, only signs of an abnormal neurological exam and symptoms that seem to fit. I've had numerous other blood tests to rule out lupus, Sjogren's, RA, B12 deficiency, Wilson's disease, neurosyphilis, HIV, HTLV, and other infections. I don't know where else to turn at this point. Should I even bother to see an MS specialist when all these tests have come back negative? My uncle has RRMS and says this is exactly how he started out when he was diagnosed ten years ago, but he was diagnosed with an LP. My instructor said the same, but she has multiple lesions on MRI. I'm at such a loss. If it's not MS, I don't know what else it could be since it seems like all the tests have been run and come back normal.
Fast forward to two years ago. I was reexamined and found to have some signs that were abnormal: hyperreflexia in upper and lower extremities, Babisnki upgoing in both feet, and clonus in my ankles. I also experience L'hermitte's sign when I flex my neck. Over the past few years, I've developed some other troubling symptoms. My tripping has gotten worse and I often fall into walls because my balance is terrible. I get horrible numbness and tingling in my hands and feet that last for hours. I don't know if this qualifies as incontinence, but sneezing or laughing can cause me to empty my bladder even if I don't have the urge to go. Being in the heat too long blurs my vision and causes vertigo. My muscles twitch, even my whole torso which will jerk one way or another when I'm sitting on the sofa or lying in bed. I've had difficulty swallowing, but it has gotten worse. A few weeks ago it took me three hours to swallow a piece of carrot. My newest symptom is hand weakness that causes me to drop things. They feel heavy like I can't even lift them up.
I've seen two neurologists for this, neither of whom think I have MS. I can't say I blame them since my MRIs have only come back with 2 non-specific lesions, only 1 is paraventricular. I had an LP done a week ago that showed no oligoclonal bands. I have no physical evidence of MS, only signs of an abnormal neurological exam and symptoms that seem to fit. I've had numerous other blood tests to rule out lupus, Sjogren's, RA, B12 deficiency, Wilson's disease, neurosyphilis, HIV, HTLV, and other infections. I don't know where else to turn at this point. Should I even bother to see an MS specialist when all these tests have come back negative? My uncle has RRMS and says this is exactly how he started out when he was diagnosed ten years ago, but he was diagnosed with an LP. My instructor said the same, but she has multiple lesions on MRI. I'm at such a loss. If it's not MS, I don't know what else it could be since it seems like all the tests have been run and come back normal.
COMMUNITY LEADER
Hi and welcome,
Q: Should I even bother to see an MS specialist when all these tests have come back negative?
A: Yes definitely get the opinion of an MS specialising neurologist because your clinical neurological diagnostic evidence is not normal it's abnormal and without any other medical explanation MS can not be ruled out when you've got the suggestive progression history, symptom types and pattern, and objective clinical evidence suggestive-consistent of a neurological condition like MS....so it would be in your best interest to get the opinion of an MS specialist who has more experience in what MS looks like despite slamb dunk MRI evidence.
You said "I don't know if this qualifies as incontinence, but sneezing or laughing can cause me to empty my bladder even if I don't have the urge to go." and technically what your describing would be more suggestive of 'stress incontinence' which is the most common type of incontinence in woman after a vaginally giving birth, so whilst it's not the more specific types associated with MS, stress incontinence can still happen to pwMS too.
I hope that helps......JJ
Q: Should I even bother to see an MS specialist when all these tests have come back negative?
A: Yes definitely get the opinion of an MS specialising neurologist because your clinical neurological diagnostic evidence is not normal it's abnormal and without any other medical explanation MS can not be ruled out when you've got the suggestive progression history, symptom types and pattern, and objective clinical evidence suggestive-consistent of a neurological condition like MS....so it would be in your best interest to get the opinion of an MS specialist who has more experience in what MS looks like despite slamb dunk MRI evidence.
You said "I don't know if this qualifies as incontinence, but sneezing or laughing can cause me to empty my bladder even if I don't have the urge to go." and technically what your describing would be more suggestive of 'stress incontinence' which is the most common type of incontinence in woman after a vaginally giving birth, so whilst it's not the more specific types associated with MS, stress incontinence can still happen to pwMS too.
I hope that helps......JJ
2 Comments
sorry that should read...so it would be in your best interest to get the opinion of an MS specialist who has more experience in what MS looks like despite not have the slamb dunk MRI evidence.
Thank you so much for responding. It's good to know I'm not crazy and there really are abnormalities that shouldn't be disregarded. There is an MS clinic close to me that I'm planning on making an appointment with. My regular neurologists don't seem as concerned, but I am. Mayo is somewhat close to me, so if it turns out not to be MS, I still have that option.
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