Aa
My recent life with MS fear
It's quite long and please forgive my English.
Hi, I'm a 26 y/o Asian male. And like some people on the board, I'm a hypochondriac guy. And my neurologist is a specialist of MS.
My left twitch/or so called wrist spasm began from last Oct and it is that time that I first knew BFS and MS. I visited numerous doctors and only my current neurologist thought that I have something wrong and worthy to check it out. I had blood checkup/SSEP and then Brain MRI on a 3T mri w/o contrast last Dec. and all checkup turned back clear. My neurologist attribute all of my symptoms to the stenosis of a brain vessel. My symptoms did calm down for about 2 months.
However, as most neuro related symptoms calmed down, my muscle began to sore and my first self-diagnose is Polymyositis. After some blood checkup, I ruled out Polymyositis/RA but the sore persisted body-widely. My next self-dx is Fibromyalgia and I did have those tender point on my body but I did not officially get the diagnose from doctor. My neurologist think it is peripheral neuropathy or some vessel problem.
Things did not get better as time goes by. I recently experience slight body wide tingling and it wax and wane during the day. The tingling sensation seems to be the last straw that I convinced myself that I have MS. I rushed to my neurologist's office and he gave me another SSEP test to check whether things went worse. The SSEP was still clear. I know that it is possible for MS to have lesions only in the spine and I asked my doctor whether I should have a spine MRI to ruled out MS. He didn't there is a need to do the spine MRI according to my normal SSEP test and I didn't not fit criterion to have my health insurance in my country to cover that expense.
In that night of the SSEP checkup, I suddenly felt that part of my spine were numb and felt uncomfortable in the supine gesture. Of course, I were freak out that night and rushed to my neurologist the next day. He tapped my spine and I did had some strange/numb sensation. Then he wrote on the computer: C7-T5 Lhermitte's sign positive, possibly due to partial myelitis. Multiple Sclerosis and Neuromyelitis Optica needs to be ruled out. Then he ordered an cervical spine MRI w/ and w/o contrast at the spot. And he gave me a three-day high dose steroid prescription to prevent any exacerbation before the MRI. My neurologist, who is a MS specialist think that it is highly possible that I have Neuromyelitis Optica (in my country, some people called it Devil's Disease because of its alias, Devic's Disease). And it is when I know what Neuromyelitis Optica really is. It is a disease that has poorer prognosis than MS, it highly disables people and there is currently no way to delay its progress like those interferon for MS. It is really terrifying for a hypercondriac like me. I convinced myself that I did have myelitis and I read a lot of book about how to live with MS or something like that. I waited for 11 days to have my c-spine MRI conducted.
I had my MRI finished yesterday and went to my neurologist's office to get my life sentence like a prisoner. Miraculously, the C-spine MRI (showed till to T4, where I have weird sensation)came back clear. And my neurologist didn't think that I need to keep taking steroid since there is no evidence of inflammation. He said it is the inflammation on the peripheral nerve (too small to show up on the MRI) that caused the symptoms I have. And all I need is to take Vit. B12 and keep regular hours.
I'm now try to accept that I didn't not have MS or Neuromyelitis Optica but the tingling sensation always worries me that i have something wrong. Objectively speaking, I've got enough checkups to rule out MS etc. (2 normal SSEP/1 clear Brain MRI w/o contrast before some symptoms/ 1 c-spine MRI w/ and w/o contrast). And if I want to have another follow up brain or t-spine MRI to have a peace mind, I have to pay on my expanse. What's your opinion?
Hi, I'm a 26 y/o Asian male. And like some people on the board, I'm a hypochondriac guy. And my neurologist is a specialist of MS.
My left twitch/or so called wrist spasm began from last Oct and it is that time that I first knew BFS and MS. I visited numerous doctors and only my current neurologist thought that I have something wrong and worthy to check it out. I had blood checkup/SSEP and then Brain MRI on a 3T mri w/o contrast last Dec. and all checkup turned back clear. My neurologist attribute all of my symptoms to the stenosis of a brain vessel. My symptoms did calm down for about 2 months.
However, as most neuro related symptoms calmed down, my muscle began to sore and my first self-diagnose is Polymyositis. After some blood checkup, I ruled out Polymyositis/RA but the sore persisted body-widely. My next self-dx is Fibromyalgia and I did have those tender point on my body but I did not officially get the diagnose from doctor. My neurologist think it is peripheral neuropathy or some vessel problem.
Things did not get better as time goes by. I recently experience slight body wide tingling and it wax and wane during the day. The tingling sensation seems to be the last straw that I convinced myself that I have MS. I rushed to my neurologist's office and he gave me another SSEP test to check whether things went worse. The SSEP was still clear. I know that it is possible for MS to have lesions only in the spine and I asked my doctor whether I should have a spine MRI to ruled out MS. He didn't there is a need to do the spine MRI according to my normal SSEP test and I didn't not fit criterion to have my health insurance in my country to cover that expense.
In that night of the SSEP checkup, I suddenly felt that part of my spine were numb and felt uncomfortable in the supine gesture. Of course, I were freak out that night and rushed to my neurologist the next day. He tapped my spine and I did had some strange/numb sensation. Then he wrote on the computer: C7-T5 Lhermitte's sign positive, possibly due to partial myelitis. Multiple Sclerosis and Neuromyelitis Optica needs to be ruled out. Then he ordered an cervical spine MRI w/ and w/o contrast at the spot. And he gave me a three-day high dose steroid prescription to prevent any exacerbation before the MRI. My neurologist, who is a MS specialist think that it is highly possible that I have Neuromyelitis Optica (in my country, some people called it Devil's Disease because of its alias, Devic's Disease). And it is when I know what Neuromyelitis Optica really is. It is a disease that has poorer prognosis than MS, it highly disables people and there is currently no way to delay its progress like those interferon for MS. It is really terrifying for a hypercondriac like me. I convinced myself that I did have myelitis and I read a lot of book about how to live with MS or something like that. I waited for 11 days to have my c-spine MRI conducted.
I had my MRI finished yesterday and went to my neurologist's office to get my life sentence like a prisoner. Miraculously, the C-spine MRI (showed till to T4, where I have weird sensation)came back clear. And my neurologist didn't think that I need to keep taking steroid since there is no evidence of inflammation. He said it is the inflammation on the peripheral nerve (too small to show up on the MRI) that caused the symptoms I have. And all I need is to take Vit. B12 and keep regular hours.
I'm now try to accept that I didn't not have MS or Neuromyelitis Optica but the tingling sensation always worries me that i have something wrong. Objectively speaking, I've got enough checkups to rule out MS etc. (2 normal SSEP/1 clear Brain MRI w/o contrast before some symptoms/ 1 c-spine MRI w/ and w/o contrast). And if I want to have another follow up brain or t-spine MRI to have a peace mind, I have to pay on my expanse. What's your opinion?
I just felt well except the tingling feeling. I have no difficulty in keeping balance and have no weakness. My doctor did check my eyeball motion, sensory ability, balance.
There's one reason that the tingling worries me. Last week, while waiting for the MRI test, I regularly took low dose steroid as a precaution and the tingling did vanish. After visiting my doc and had the c-spine MRI, I stopped taking steroid and then the tingling showed up. I really worry about it and plan to take the steroid again and see whether the tingling will vanish again.
There's one reason that the tingling worries me. Last week, while waiting for the MRI test, I regularly took low dose steroid as a precaution and the tingling did vanish. After visiting my doc and had the c-spine MRI, I stopped taking steroid and then the tingling showed up. I really worry about it and plan to take the steroid again and see whether the tingling will vanish again.
Hi there,
I too feel your english is good!
I'm sorry you are living in such fear. I cannot stress more the dangers of self-diagnosis, or diagnosis via internet. There is just as much bad info on the www as there is good, if not more.
If this doctor is a specialist, then I hope he or she is treating the current problem you mention - hypochondria and the anxiety that comes along with that. Be honest with your doctors.
You mention it's "miraculous" that your c-spine was clear. I say it is wonderful your C-spine is clear. Many of us have very damaged CNS's that cannot be healed.
Please know that there are people out there with real disease and syndromes, and there are also those who suffer w/disorders such as what your mention. Some of these can be treated with medicine and there are cures. MS can be treated, but there is no cure.
My opinion is to not seek a disease you think you have via the net or books. Be honest with your doctor and say all your fears so you can get what you need to live your life w/out being held back from feeling well.
I too feel your english is good!
I'm sorry you are living in such fear. I cannot stress more the dangers of self-diagnosis, or diagnosis via internet. There is just as much bad info on the www as there is good, if not more.
If this doctor is a specialist, then I hope he or she is treating the current problem you mention - hypochondria and the anxiety that comes along with that. Be honest with your doctors.
You mention it's "miraculous" that your c-spine was clear. I say it is wonderful your C-spine is clear. Many of us have very damaged CNS's that cannot be healed.
Please know that there are people out there with real disease and syndromes, and there are also those who suffer w/disorders such as what your mention. Some of these can be treated with medicine and there are cures. MS can be treated, but there is no cure.
My opinion is to not seek a disease you think you have via the net or books. Be honest with your doctor and say all your fears so you can get what you need to live your life w/out being held back from feeling well.
You did a very good job of explaining your health history and it is good that you recognize that you are also a hypochondriac. It sounds like your sypmtoms are real, but finding the answers may just not happen.
Your doctor sounds wonderful - doing all those tests to be sure about MS is a good thing. IT is possible to have MS and not have lesions show on your MRI, but that is about a 15% occurence. What does your clinical exam show? Besides the SSEP, did the neuro do a complete exam, testing reflexes, balance, visions, etc? That is still the best clues the doctor can use in looking at a neurological disorder.
Our body is incredibly noisy - I just heard a doctor talk about tingling he experiences at times that is really nothing but his body making noise. If we stop and shut out all other sounds, we can hear our heart, sometimes even hear our blood flowing. We can feel pings and zaps that aren't necessarily noticed when we have other things going on. At bed trying to go to sleep is one of the worst times.
My neuro explained it early on- when you lay down at night and turn off the lights and all other sounds, you then begin to hear the creaks and strange noises of your own house. The same happens in listening to our bodies.
Another possible explanation is you may have had a virus infection in the past year or so that has left you with some symptoms that take a while to go away. The numbness and other parasthesia can sometimes happen from a simple germ running its course.
I am so sorry you are having these worrisome problems and hope you get some answers and some peace of mind.
be well, Lulu
Your doctor sounds wonderful - doing all those tests to be sure about MS is a good thing. IT is possible to have MS and not have lesions show on your MRI, but that is about a 15% occurence. What does your clinical exam show? Besides the SSEP, did the neuro do a complete exam, testing reflexes, balance, visions, etc? That is still the best clues the doctor can use in looking at a neurological disorder.
Our body is incredibly noisy - I just heard a doctor talk about tingling he experiences at times that is really nothing but his body making noise. If we stop and shut out all other sounds, we can hear our heart, sometimes even hear our blood flowing. We can feel pings and zaps that aren't necessarily noticed when we have other things going on. At bed trying to go to sleep is one of the worst times.
My neuro explained it early on- when you lay down at night and turn off the lights and all other sounds, you then begin to hear the creaks and strange noises of your own house. The same happens in listening to our bodies.
Another possible explanation is you may have had a virus infection in the past year or so that has left you with some symptoms that take a while to go away. The numbness and other parasthesia can sometimes happen from a simple germ running its course.
I am so sorry you are having these worrisome problems and hope you get some answers and some peace of mind.
be well, Lulu
COMMUNITY LEADER
Hi and welcome to our little corner of the web.
Well what I'm about to say has basically been said by your self all the way through your post, so I don't think you'll be overly suprised but possibly it's not something you've had medically investigated or appropriately treated.
I'm thinking psychological and not physiological because you freely admit to being a "hypochondriac", you convince your self and self diagnose different yet all serious diseases, when your sx 'perspectively' are quite minor. Your anxiety appears to run high none the less and so far appropriate testing hasn't identified the issue as a physical one so considering all that, i'd say mental health is an actual possibility, health anxiety to be more specific.
If you are seriously considering the expense of paying for another MRI, I would first consider the cheaper option, of having your mental health fully assessed before you do so. I hope that soon your fear will be under control and hopefully you can put this all behind you. :-)
Cheers............JJ
Well what I'm about to say has basically been said by your self all the way through your post, so I don't think you'll be overly suprised but possibly it's not something you've had medically investigated or appropriately treated.
I'm thinking psychological and not physiological because you freely admit to being a "hypochondriac", you convince your self and self diagnose different yet all serious diseases, when your sx 'perspectively' are quite minor. Your anxiety appears to run high none the less and so far appropriate testing hasn't identified the issue as a physical one so considering all that, i'd say mental health is an actual possibility, health anxiety to be more specific.
If you are seriously considering the expense of paying for another MRI, I would first consider the cheaper option, of having your mental health fully assessed before you do so. I hope that soon your fear will be under control and hopefully you can put this all behind you. :-)
Cheers............JJ
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