Aa
Could this be MS or what could it be?
Hello, First I would just like to thank you all for being here on this website. More then anything it helps me to believe that I am not crazy lol
I will start from the beginning. I am 40 years old and in very good health. I am not depressed or looking for attention. I am happily married with 2 wonderful children, great family and friends. I do not take any medications and other then this issue (and my yearly women check up) I never go to the dr. 5 years ago I had a bout of pins and needles in my hands and feet which lasted for almost a month. I went to a dr after the first 2 weeks - he told me to come back in a week if was still happening - I did, he then just told me that it was probably just a virus and no need to come back to see him. I never did and like I say, the symptoms ended up going.
Flash forward to January of this year. I would period of a week or two where I would think that cold water was running down my leg, or chest, or splashed on my face. It came back in the end of May along with company - pins and needles. These were mostly on my right side, but some on the left. Pins and needles were even behind my eyes, in my throat, in my ears, my stomach. I would also experience stabbing pains in these same areas, sort of like a hot needles. I would have a charlie horse feeling in my calf, sole of my foot and even the palm of my hand. My leg and occasionally my arm will get a vibrating buzzing sensation shoot down it. I would get off balance easily and my right leg was very heavy and sort of felt like it did not belong to me, but I would not way it was completely numb. I felt very tired and at times sort of disconnected from what was going on around me, especially if I was in a group and multiple conversations were going on. Anyway, after 2 weeks of this I went to my family dr. She did a quick examination and ran some blood tests for things like B12, Lupus, thyroid, lyme etc and everything came back normal apart from elevated EBV lgG (which is a past infection and not a current one so I am not sure why it was elevated or if it is even relevant.)
The dr suspected MS and sent me to a neurologist. He examined me and said I had definate weakness on my right side as well as a positive Babinski refelx (?) the tuning fork thing felt burning hot on my foot, but cold elsewhere - he sent me for an MRI w and without contrast of my brain and c-spine. These came back normal - which is great as I was afraid it was going to be something dreadful like a brain tumor! So anyway, the dr just says - The MRI is normal, I don't know what else your symptoms could be - there is nothing I can do for you - goodbye. I was just sort of shocked that he would not at least point me in another direction to help me.
Here I am in at the end of July and now I have pins and needles again with the darn buzzing/vibrating in my leg. The sole of my foot and my palm feel like they have been slapped and my calf is so tight. I fear it is starting all over again and I don't know what to do. Do I go back to my family dr? Do I call the disinterested neurologist? Do I just do nothing and wait for it to go away again? I am afraid they will think I am crazy........ am I?
Any ideas what I could have wrong with me?
Thanks for listening.
I will start from the beginning. I am 40 years old and in very good health. I am not depressed or looking for attention. I am happily married with 2 wonderful children, great family and friends. I do not take any medications and other then this issue (and my yearly women check up) I never go to the dr. 5 years ago I had a bout of pins and needles in my hands and feet which lasted for almost a month. I went to a dr after the first 2 weeks - he told me to come back in a week if was still happening - I did, he then just told me that it was probably just a virus and no need to come back to see him. I never did and like I say, the symptoms ended up going.
Flash forward to January of this year. I would period of a week or two where I would think that cold water was running down my leg, or chest, or splashed on my face. It came back in the end of May along with company - pins and needles. These were mostly on my right side, but some on the left. Pins and needles were even behind my eyes, in my throat, in my ears, my stomach. I would also experience stabbing pains in these same areas, sort of like a hot needles. I would have a charlie horse feeling in my calf, sole of my foot and even the palm of my hand. My leg and occasionally my arm will get a vibrating buzzing sensation shoot down it. I would get off balance easily and my right leg was very heavy and sort of felt like it did not belong to me, but I would not way it was completely numb. I felt very tired and at times sort of disconnected from what was going on around me, especially if I was in a group and multiple conversations were going on. Anyway, after 2 weeks of this I went to my family dr. She did a quick examination and ran some blood tests for things like B12, Lupus, thyroid, lyme etc and everything came back normal apart from elevated EBV lgG (which is a past infection and not a current one so I am not sure why it was elevated or if it is even relevant.)
The dr suspected MS and sent me to a neurologist. He examined me and said I had definate weakness on my right side as well as a positive Babinski refelx (?) the tuning fork thing felt burning hot on my foot, but cold elsewhere - he sent me for an MRI w and without contrast of my brain and c-spine. These came back normal - which is great as I was afraid it was going to be something dreadful like a brain tumor! So anyway, the dr just says - The MRI is normal, I don't know what else your symptoms could be - there is nothing I can do for you - goodbye. I was just sort of shocked that he would not at least point me in another direction to help me.
Here I am in at the end of July and now I have pins and needles again with the darn buzzing/vibrating in my leg. The sole of my foot and my palm feel like they have been slapped and my calf is so tight. I fear it is starting all over again and I don't know what to do. Do I go back to my family dr? Do I call the disinterested neurologist? Do I just do nothing and wait for it to go away again? I am afraid they will think I am crazy........ am I?
Any ideas what I could have wrong with me?
Thanks for listening.
If you live in the US, if you go to this site at george town you can look up the state in which you live in to see the which i to dot and t's to cross to view your medical records. http://hpi.georgetown.edu/privacy/records.html
Hope it helps! Kaen
Hope it helps! Kaen
The aspartame-MS "link" has been thoroughly debunked. Check Snopes for more.
Yes, he has to give you your records. If you didn't sign a HIPAA release in his office, you should be able to fax one over, and they can mail your records to you, or you can offer to come in and sign the release and pick up your records when they are ready. If I were you, I'd also get the MRI results, too, and start keeping track of all of this. If they have the MRI films on CD, get that, too.
Bio
Yes, he has to give you your records. If you didn't sign a HIPAA release in his office, you should be able to fax one over, and they can mail your records to you, or you can offer to come in and sign the release and pick up your records when they are ready. If I were you, I'd also get the MRI results, too, and start keeping track of all of this. If they have the MRI films on CD, get that, too.
Bio
Thank you for your feedback. I do not drink soda of any kind and I don't like the taste of aspertame - I prefer the real thing :-) So as far as I know I don't think this could be it. If you can think of any other thing it could be, please do keep the ideas coming! Thank you so much.
Thank you all so much for your feedback and support. when I logged on just now and saw so many replies - well it actually brought me to tears. I think I have kept a lot of my worry about this inside as I don't want to worry my husband. It is such a relief to talk to someone about this and especially to others who know what I am going through.
Going back to my neuro exam. My balance was/is off and I know this without him saying so. I was not positive for Hoffman's but I was positive for Romsberg. My gait was a little off too. He never mentioned anything about my reflexes, I think they might have been normal or close to it as he did not mention anything about them.
It just shocked me that he discounted all of my symptoms and the results of the exam - did he think I was faking it? I just don't know. I did not get a good feeling from the guy to start with, but I figured it didn't really matter how his bedside manner was as long as he was a good and thorough Dr. To be honest, I was not sure what to even expect from the appointment and it was after the fact that I went online and looked into the different tests he performed during the exam. I will never go back to this guy again - that is for sure. Do you think he will give me my records? Does he have too?
I am going to go into my pcp and we will see what she says about it all. I feel confident that she will let me go to see someone else.
Thank you all so much. I will continue to stay apart of this forum - you are wonderful people.
God Bless you all.
Going back to my neuro exam. My balance was/is off and I know this without him saying so. I was not positive for Hoffman's but I was positive for Romsberg. My gait was a little off too. He never mentioned anything about my reflexes, I think they might have been normal or close to it as he did not mention anything about them.
It just shocked me that he discounted all of my symptoms and the results of the exam - did he think I was faking it? I just don't know. I did not get a good feeling from the guy to start with, but I figured it didn't really matter how his bedside manner was as long as he was a good and thorough Dr. To be honest, I was not sure what to even expect from the appointment and it was after the fact that I went online and looked into the different tests he performed during the exam. I will never go back to this guy again - that is for sure. Do you think he will give me my records? Does he have too?
I am going to go into my pcp and we will see what she says about it all. I feel confident that she will let me go to see someone else.
Thank you all so much. I will continue to stay apart of this forum - you are wonderful people.
God Bless you all.
A positive Babinski's sign is always pathological (unless you're an infant, which you clearly are not)--it is a sign of an upper motor neuron lesion of some kind--and requires being pursued, especially in the context of your other symptoms. It is not a "symptom," it is a sign, meaning an objective indication of pathology. At the very least, given the weakness and Babinski's, you need 3T MRIs of the C and T spine.
How were your reflexes--do you recall? Were you also positive for Hoffman's? Did this neuro test your balance, gait, Romberg's, etc.? This neurologist was thoroughly negligent in not pursuing the results of that neuro exam any further than he did. You probably should have a lumbar puncture in addition to the decent MRIs of the spine, and other ruleouts would include EMGs and nerve conduction studies. What is wrong with this man? Unquestionably, you should pursue a second opinion.
Bio
How were your reflexes--do you recall? Were you also positive for Hoffman's? Did this neuro test your balance, gait, Romberg's, etc.? This neurologist was thoroughly negligent in not pursuing the results of that neuro exam any further than he did. You probably should have a lumbar puncture in addition to the decent MRIs of the spine, and other ruleouts would include EMGs and nerve conduction studies. What is wrong with this man? Unquestionably, you should pursue a second opinion.
Bio
No ..you are not crazy, depressed, or having anxiety! I have been told all of the above & we know our bodies! Please check out my journal to let you know your not the only one going through this. Some of us here are on our 3rd or 4th neuro, hopefully we'll find one with common sense & without an ego! i pray you get answers soon! Please feel free to contact me anytime even if its just to vent ( I know how frustrating this is)! God bless you & I hope you feel better soon!
I am a limbolander as well and fight really hard with myself because of so many doctors dismissing me. I did have a friend tell me a while back, though, that "you have to be your own health advocate, no one is going to do it for you!" That's what I think of when I get into bouts of depression because I feel like no one is listening and I'm going crazy! It's so true.
I now have a new neuro appointment in a couple of weeks. I've been keeping an extensive symptom diary and using the tracker on this website. Hopefully that will help my cause. I've also gotten my reports from the neuro I saw 2 years ago who initially suspected MS, but simply dx me with chronic headaches because the mri was clean. I got the report from my eye doctor who reported neuralgia, but healthy eyes. I don't know what my outcome will be yet, but I have discovered that keeping record is very helpful, especially once time starts to pass and you can't really remember how long the symptoms lasted or how long they were gone, when exactly they started, etc.
Keep fighting, and please stay with us here on the forum. We're here for you!
Be well,
Heather
I now have a new neuro appointment in a couple of weeks. I've been keeping an extensive symptom diary and using the tracker on this website. Hopefully that will help my cause. I've also gotten my reports from the neuro I saw 2 years ago who initially suspected MS, but simply dx me with chronic headaches because the mri was clean. I got the report from my eye doctor who reported neuralgia, but healthy eyes. I don't know what my outcome will be yet, but I have discovered that keeping record is very helpful, especially once time starts to pass and you can't really remember how long the symptoms lasted or how long they were gone, when exactly they started, etc.
Keep fighting, and please stay with us here on the forum. We're here for you!
Be well,
Heather
I would recommend what the others said as well. Definitely get a 2nd if not 3rd opinon. I am a big believer in a person listening to their body and knowing if something is wrong. Just because the doctors can't find anything yet doesn't mean the symptoms aren't happening and it's safe to say these symptom's are abnormal. I highly urge you to not stop trying to get answers because early detection is key to any nuerological disease. In my opinion, it is definitely something neurological and it does sound like MS. I am in your boat right now with similar symptoms and doctors telling me they can't find anything. The neurologist I saw asked if I drink a lot of diet coke or have a lot of aspertame in my diet. I said no but apparently aspertame can cause MS type symptoms and many have been misdiagnosed due to this. I am definitely not saying this is what you have but I thought it would be worth mentioning.
Thank you for your feedback Jon. I appreciate all the input you can send my way.
Take care,
Fiona
Take care,
Fiona
I would recommend that you ask your PCP to send you to a different Nuerologist. There are additional tests that can be run for MS, although the MRI is the conclusive one. You have something going on, it could be MS, its possible the lesion is on your spine, which is very hard to detect with MRI.
Jon M
Jon M
Thank you Lulu for your prompt response.... and for saying that I am not crazy :-) The neuro sort of made me feel like I was. I will call my family dr and do as you say. Thank you for the info on requesting another MRI in 6 months. I am also keeping track of my symptoms, which is another wonderful tip that I have picked up from this forum.
I wish you all the best
Fiona
I wish you all the best
Fiona
Hi Mom,
Ideas? Yeah, I think I agree with your family dr. in that it sure sounds like MS to me. But I am no doctor.
By the way, welcome to our MS forum - we're about split between people who have a dx and those people like you who have a bag full of symptoms and no diagnosis.
It sometimes take a long while for the imaging technology that exists today to actually capture those lesions. The lesions can be there now, but we just can't see them.
Please don't give up on this -- I would go back to your doctor and ask for a referral for a second opinion. At the very least with your symptoms there should be repeat MRI's in about 6 months.
And no, you are not crazy.
be well,
Lulu
Ideas? Yeah, I think I agree with your family dr. in that it sure sounds like MS to me. But I am no doctor.
By the way, welcome to our MS forum - we're about split between people who have a dx and those people like you who have a bag full of symptoms and no diagnosis.
It sometimes take a long while for the imaging technology that exists today to actually capture those lesions. The lesions can be there now, but we just can't see them.
Please don't give up on this -- I would go back to your doctor and ask for a referral for a second opinion. At the very least with your symptoms there should be repeat MRI's in about 6 months.
And no, you are not crazy.
be well,
Lulu
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