Aa
Need an advice , please
Hi, would like to hear some opinions on what is happening to me.
I am a Male, 42. Basically healthy. About one month and a half ago I started feeling unusual sensations happening inside my body.
First it was a dull pain in the back side of my head. Did not pay any special attention to it. Later I started feeling burning sensations inside my head which followed by the feeling of slight numbness in my hands and feet. I also paid attention that my left arm got somewhat heavier than before.
I have to stress that these symptoms were quite mild and when I say the hands felt numb it only means that they had a decreased sensibility compared to what it was before. Two weeks later the symptoms got worse - I started to feel an annoying burning sensation in my both hand and both arms. These sensation were stronger on the left side than on the right. And I also notice a SLIGHT blurriness of my vision (both eyes). About the same time I started to feel the numbness on the left side of my face. These symptoms persist for one month already.
Off course, I visited the doctors. Neurological exams were done on me by 5 different neurologists and all of them were fine. I find the tests performed to check the level of numbness to be ridiculous to say the least. I never told to any of those doctors that my numbness is so strong that I don’t feel any touch including the one with the sharp object. It is just a clear decrease of sensation - no a total loss of it! Nobody seems to care - you don’t have this problem!
The eyes test. All of them took a look inside my eyes. Theres is no problem too. And I read on the internet that 2/3 of the ON cases are not seen by this kind of examination!
And the same is with the weak left hand. I never stated that it lost the power. Again - it is just a little bit weaker than before. And I clearly feel it ! So the neurologist just pulls my hand with me resisting and says- everything is ok. All the rest of the test is absolutely normal.
Now, I pay myself for the doctors. This is why I had no problem to be directed for the MRI brain and MRI spine test. No problems detected. But the MRI brain report informed that due to motion artifact the evaluation was limited.
Since my symptoms kept persisting I started to read the internet. MS was always an option on my my mind. That is how I found this forum. After reading a lot on the subject (and especially the posts of a brilliant woman under the nickname Quixotic7) I understood that I have to make another MRI of brain and spine.
But this tie it it should be MS protocol. Second, it should be performed on 3T machine. And the third - the contrast must be used.
So 3 days ago I made the test. So here I quote the results of the MRI BRAIN ( The whole spine MRI was unremarkable):
Brain findings: "The study reveals a tiny spot of High SI on T2W/FLAIR without enhancement or restricted diffusion at subcortical white matter of left frontal region."
Then there goes the long list of other test parameters all of which are within the norm.
"The conclusion : possible non specific white matter change."
I have to add that I never smoked in my life, never had a hypertension problems, never had any migraines.
Then Thyroid, B12 and Diabetes tests were done. All normal.My neurologists told me that I should not think about MS since this is NOT MS. Instead she proposed me antidepressants like Zoloft and Xanax.
I take Xanax for 3 days already (1.5 mg per day) and it seems reducing the burning sensation in my extremities (although I still feel it). And off course, it helps me feel better psychologically. But I understand that if she would give me heroin injections instead of Xanax I would feel even better. Much much better.
I don’t want to have MS. That is why I was always glad to hear doctors saying that I am healthy. But my symptoms claim the opposite. For one and a half month already. Every day. Who should I trust more? Let’s imagine that all my problems are stress related (I did not have any special stress problems before these problems started). What if I ignore this version ( that I am just too anxious)? What will I lose at the end? Nothing. This condition is not life threatening and is not going to make an invalid of me. And what if I have MS? In this case ignoring my problem can cost me a lot! So I have no question that I should do all I can to get the idea about what is really happening to me and get the necessary treatment asap.
Now why did I come here and wrote it all. Please, advise me on my next course of action. I plan to ask for the VEP test tomorrow. Plus, I plan to find a MS specialist, not just a neurologist. What else should be done in my situation? Any advice will be appreciated. Thank you.
I am a Male, 42. Basically healthy. About one month and a half ago I started feeling unusual sensations happening inside my body.
First it was a dull pain in the back side of my head. Did not pay any special attention to it. Later I started feeling burning sensations inside my head which followed by the feeling of slight numbness in my hands and feet. I also paid attention that my left arm got somewhat heavier than before.
I have to stress that these symptoms were quite mild and when I say the hands felt numb it only means that they had a decreased sensibility compared to what it was before. Two weeks later the symptoms got worse - I started to feel an annoying burning sensation in my both hand and both arms. These sensation were stronger on the left side than on the right. And I also notice a SLIGHT blurriness of my vision (both eyes). About the same time I started to feel the numbness on the left side of my face. These symptoms persist for one month already.
Off course, I visited the doctors. Neurological exams were done on me by 5 different neurologists and all of them were fine. I find the tests performed to check the level of numbness to be ridiculous to say the least. I never told to any of those doctors that my numbness is so strong that I don’t feel any touch including the one with the sharp object. It is just a clear decrease of sensation - no a total loss of it! Nobody seems to care - you don’t have this problem!
The eyes test. All of them took a look inside my eyes. Theres is no problem too. And I read on the internet that 2/3 of the ON cases are not seen by this kind of examination!
And the same is with the weak left hand. I never stated that it lost the power. Again - it is just a little bit weaker than before. And I clearly feel it ! So the neurologist just pulls my hand with me resisting and says- everything is ok. All the rest of the test is absolutely normal.
Now, I pay myself for the doctors. This is why I had no problem to be directed for the MRI brain and MRI spine test. No problems detected. But the MRI brain report informed that due to motion artifact the evaluation was limited.
Since my symptoms kept persisting I started to read the internet. MS was always an option on my my mind. That is how I found this forum. After reading a lot on the subject (and especially the posts of a brilliant woman under the nickname Quixotic7) I understood that I have to make another MRI of brain and spine.
But this tie it it should be MS protocol. Second, it should be performed on 3T machine. And the third - the contrast must be used.
So 3 days ago I made the test. So here I quote the results of the MRI BRAIN ( The whole spine MRI was unremarkable):
Brain findings: "The study reveals a tiny spot of High SI on T2W/FLAIR without enhancement or restricted diffusion at subcortical white matter of left frontal region."
Then there goes the long list of other test parameters all of which are within the norm.
"The conclusion : possible non specific white matter change."
I have to add that I never smoked in my life, never had a hypertension problems, never had any migraines.
Then Thyroid, B12 and Diabetes tests were done. All normal.My neurologists told me that I should not think about MS since this is NOT MS. Instead she proposed me antidepressants like Zoloft and Xanax.
I take Xanax for 3 days already (1.5 mg per day) and it seems reducing the burning sensation in my extremities (although I still feel it). And off course, it helps me feel better psychologically. But I understand that if she would give me heroin injections instead of Xanax I would feel even better. Much much better.
I don’t want to have MS. That is why I was always glad to hear doctors saying that I am healthy. But my symptoms claim the opposite. For one and a half month already. Every day. Who should I trust more? Let’s imagine that all my problems are stress related (I did not have any special stress problems before these problems started). What if I ignore this version ( that I am just too anxious)? What will I lose at the end? Nothing. This condition is not life threatening and is not going to make an invalid of me. And what if I have MS? In this case ignoring my problem can cost me a lot! So I have no question that I should do all I can to get the idea about what is really happening to me and get the necessary treatment asap.
Now why did I come here and wrote it all. Please, advise me on my next course of action. I plan to ask for the VEP test tomorrow. Plus, I plan to find a MS specialist, not just a neurologist. What else should be done in my situation? Any advice will be appreciated. Thank you.
COMMUNITY LEADER
Hi and welcome,
From what you've mentioned, your basically saying there is a decrease of sensation and an annoying burning sensation in all peripherals, decrease in strength in your left hand, decreased sensation on the left side of your face and very slight bilateral blurred vision BUT in 6 weeks you've seen 5 neurologists and had 2 different sets of brain and spinal MRI's, blood tests etc and every test so far has been normal...
I understand your concerns but you need to keep in mind that it's not in your best interest to singularly focus on MS and inadvertently over look every other more likely causation of 'all peripheral' sensory nerve issues eg conditions associated with peripheral neuropathy, vitamin deficiencies, mental health, viral, pre-diabetes or diabetes etc etc etc
True story, my daughter was experiencing all your issues and more, she kept getting sicker and sicker and nothing was showing up so the assumption was mental health even though she actually looked as sick as she felt....months later she saw another GP in frustration, her lung function was heads up abnormal, all the blood tests were run again with a few additions, it turned out it had nothing what so ever to do with mental health, she actually had a common childhood contagious disease that she should of been immune from but wasn't.
My point is that 'normal' medical tests are just as good at pointing towards causation, as abnormal medical test results are.....your symptom description, your test results ie everything so far is pointing away from 'central' nervous system neurological conditions like MS and pointing towards conditions that cause all peripheral symptoms instead, so the question should be what medical issues more commonly cause these types of symptom and what haven't I been tested for yet?
Hope that helps..........JJ
From what you've mentioned, your basically saying there is a decrease of sensation and an annoying burning sensation in all peripherals, decrease in strength in your left hand, decreased sensation on the left side of your face and very slight bilateral blurred vision BUT in 6 weeks you've seen 5 neurologists and had 2 different sets of brain and spinal MRI's, blood tests etc and every test so far has been normal...
I understand your concerns but you need to keep in mind that it's not in your best interest to singularly focus on MS and inadvertently over look every other more likely causation of 'all peripheral' sensory nerve issues eg conditions associated with peripheral neuropathy, vitamin deficiencies, mental health, viral, pre-diabetes or diabetes etc etc etc
True story, my daughter was experiencing all your issues and more, she kept getting sicker and sicker and nothing was showing up so the assumption was mental health even though she actually looked as sick as she felt....months later she saw another GP in frustration, her lung function was heads up abnormal, all the blood tests were run again with a few additions, it turned out it had nothing what so ever to do with mental health, she actually had a common childhood contagious disease that she should of been immune from but wasn't.
My point is that 'normal' medical tests are just as good at pointing towards causation, as abnormal medical test results are.....your symptom description, your test results ie everything so far is pointing away from 'central' nervous system neurological conditions like MS and pointing towards conditions that cause all peripheral symptoms instead, so the question should be what medical issues more commonly cause these types of symptom and what haven't I been tested for yet?
Hope that helps..........JJ
My advise. If placed in a complex undiagnosed category you must strongly advocate for yourself as I have learned for years now. Though I have 3 physicians who steadfastly believe I exhibit MS sx, my ms neuro believes otherwise since both MRIS showed no evidence. Yet recently I was dx with optic neuritis. Don't wait months for an appt. with an MS Neuro or any specialty for that matter. I've been told it would be 3 to 6 months to see any physician. But with diligent efforts of calling every single day to get in earlier, my 3-6 month wait turns into 3 weeks or less. Place yourself on a cancellation list if possible and still make certain while on that cancellation list you call daily. Never have I had to wait more than a month to see someone but only due to my aggressiveness in persevering to be seen. In certain cases like mine you can have clear MRIS and still have a condition. Frustrating to be placed in a watchful phase but it's what neuros do if you don't fit the criteria for a dx. Hang in there as whatever ails you, it will take strong advocacy on your part with a documented evidence based record to get attention.
Welcome. Something is really going on with you.
Many of us only get 1.5 Tesla MRIs. The protocal used and the computer program is much more important than Magnet strength. MS protocal has more slices or views. What you describe does not sound like MS. I do believe there is something going on. I would just not concentrate on MS.
Neurological diagnosis especially MS can take years. My diagnosis took two years and every test I had strongly showed MS from my first MRI on. They were not looking for MS with me.
Every time I changed neurologists they started with square one so it is good to stay with one. They like to see you like every six months to see changes.
If you have ever had ON it will show up on MRIs and other tests.I have had MS for along time but have never had ON so it never shows up.
Yes a MS Specialist is important. They are busy so it can take awhile for an appointment. For me it was 8 months.
Keepin a symptom diary can help.
Many of us only get 1.5 Tesla MRIs. The protocal used and the computer program is much more important than Magnet strength. MS protocal has more slices or views. What you describe does not sound like MS. I do believe there is something going on. I would just not concentrate on MS.
Neurological diagnosis especially MS can take years. My diagnosis took two years and every test I had strongly showed MS from my first MRI on. They were not looking for MS with me.
Every time I changed neurologists they started with square one so it is good to stay with one. They like to see you like every six months to see changes.
If you have ever had ON it will show up on MRIs and other tests.I have had MS for along time but have never had ON so it never shows up.
Yes a MS Specialist is important. They are busy so it can take awhile for an appointment. For me it was 8 months.
Keepin a symptom diary can help.
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I suggest you visit a neuro-ophthalmologist for a thorough look at your eyes. If you are having optic neuritis he should be able to tell from this examination, though blurriness is not generally a sign of ON. Have you had a standard eye exam? A VEP test might be helpful, but there are no symptoms associated with abnormal results.
It sounds as if, since you are able to schedule and pay for all this testing, that you are researching MS and picking out tests that might correlate with your symptoms. This is not a wise way to proceed. Much better to find a good MS specialist, not a general neurologist, and continue to see this doctor if you experience anything new. Let that person, who is trained, be in charge. I think it is highly unlikely you have MS, but if as time passes it turns out that you do, you can be treated then. MS is a slow-moving disease, even if it does not always seem so. By being followed by a competent specialist you stand the best chance of retaining the good health you now have.
Also, please don't downplay the effect our mental health can have on our overall health. If psychiatric drugs are helping you, that's a good sign. But please be careful with Xanax. Benzodiazepines can be very addictive.