jean b
07-20-2004, 01:13 AM
:confused: It all started back in october. My left foot went numb. Thinking not to much of it I called the knee doctor (sometimes I get fluid on the knee) That day I had my knee drained. By the next day my foot was like a brick- my right side of my tongue was numb and my bottom right side of my lip. I called the knee doctor and went to the hospital where he was- they did a cat scan and found nothing=- while waiting for the results the right side of my face went numb and my lip was drooping. I saw a great neurologist and had two mris done and a neuron test done. My test came back with a slowing of stimuli and the MRI had a possible two spots. He told me I should go for a spinal tap but I am a nervous reck! There is also no link to ms in my family. He mentioned its possibly MS and highly recommened the LP. I have a lot of numbness now in my foot/hands. Any advice?
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Jewel2
07-20-2004, 01:23 AM
Hi Jean,
I'm sorry you are going through this. I remember quite well all of the fear and concerns we had when the doctor suspected that my daughter had MS. We were reeling from it all and had to make all kinds of decisions in the midst of it. I feel for you.
I would do the LP if I were you. They are not always conclusive, but if it does confirm your doctor's suspicion of MS, then you could get on one of the drugs that might slow the progression of it. The earlier you start the therapy the more likely it is to help.
A family history is not necessary for MS. There is a genetic predisposition to it, but it is not a hereditary disease.
Hang in there and keep doing your research. Please stay in touch.
Take care,
Julie
I'm sorry you are going through this. I remember quite well all of the fear and concerns we had when the doctor suspected that my daughter had MS. We were reeling from it all and had to make all kinds of decisions in the midst of it. I feel for you.
I would do the LP if I were you. They are not always conclusive, but if it does confirm your doctor's suspicion of MS, then you could get on one of the drugs that might slow the progression of it. The earlier you start the therapy the more likely it is to help.
A family history is not necessary for MS. There is a genetic predisposition to it, but it is not a hereditary disease.
Hang in there and keep doing your research. Please stay in touch.
Take care,
Julie
jean b
07-20-2004, 10:26 PM
Julie,
Thanks so much! Did your daughter have to go for the LP? I heard so many bad things that I backed out while having the pre-op and signing all the paper work. :(
Thanks so much! Did your daughter have to go for the LP? I heard so many bad things that I backed out while having the pre-op and signing all the paper work. :(
Jewel2
07-20-2004, 11:25 PM
Hi Jean,
No, my daughter didn't need one. She had 8 lesions show on her first MRI and her clinical symptoms were very obviously MS. They ran some bloodwork to rule out other things, like a vitamin B deficiency.
I hear about a lot of people who fear the worst about the LP and then report back it wasn't bad at all. My husband had one and he just had to lie still the day he had it, but he was fine except for a mild headache. Of course, there is always the exception, those who get a bad headache. Try running a search of this board with LP or Lumbar puncture and headache and I'll bet you can read about others' experiences.
Take care,
Julie
No, my daughter didn't need one. She had 8 lesions show on her first MRI and her clinical symptoms were very obviously MS. They ran some bloodwork to rule out other things, like a vitamin B deficiency.
I hear about a lot of people who fear the worst about the LP and then report back it wasn't bad at all. My husband had one and he just had to lie still the day he had it, but he was fine except for a mild headache. Of course, there is always the exception, those who get a bad headache. Try running a search of this board with LP or Lumbar puncture and headache and I'll bet you can read about others' experiences.
Take care,
Julie
jean b
07-21-2004, 10:12 PM
Julie,
If you don't mind me asking what were some of her symptoms? Was she young? I thought all this was just a freaky thing that would pass. Lately I feel very tired and not very motivated to do much with the numbness. I would be shopping and my foot would just go numb. I also had a problem gaining weight. ( not sure if thats associated) I used to be a go getter but something about me feels different '- i just don 't feel healthy. Thanks again for your support - your daughter is lucky to have you. :angel:
If you don't mind me asking what were some of her symptoms? Was she young? I thought all this was just a freaky thing that would pass. Lately I feel very tired and not very motivated to do much with the numbness. I would be shopping and my foot would just go numb. I also had a problem gaining weight. ( not sure if thats associated) I used to be a go getter but something about me feels different '- i just don 't feel healthy. Thanks again for your support - your daughter is lucky to have you. :angel:
Jewel2
07-22-2004, 12:48 AM
Hi Jean,
The worst symptoms my daughter had in the first 6 months included chronic numb 'n tingly toes, complete blindness from optic neuritis (very frightening), and total paralysis from the neck down (beyond scary). She had 2 series of MRI's with and without contrast within the first 5 months. Fortunately, my brother is a doctor with privileges at a highly regarded hospital and consulted with their neuroradiologist for the diagnosis.
As far as weight gain, that can be kind of a secondary thing with MS. It can be as a result of symptoms preventing you from being active, or from eating comfort food due to depression (another symptom of MS), stress or fear. You might want to really observe your eating habits for a while. If you are overeating, try to figure out why. If you're not overeating, then you might want to talk to your doctor. Perhaps you have a thyroid problem (common in women and I've noticed in MS patients). A simple blood test can uncover that. If it's as a result of not being able to be active, you might have to lower your caloric intake to adjust to the lower metabolism (this is what my daughter has had to do). It might be worth it to consult a nutritionist, especially one who is familiar with MS. Just some thoughts.
My daughter is now 24. She was 19 when diagnosed, a bit on the young side for such aggressive MS. And thanks for the kind words, but I feel like I'm the one who is very blessed to have her! She is truly an inspiration to me.
Take care, my friend!
Julie
The worst symptoms my daughter had in the first 6 months included chronic numb 'n tingly toes, complete blindness from optic neuritis (very frightening), and total paralysis from the neck down (beyond scary). She had 2 series of MRI's with and without contrast within the first 5 months. Fortunately, my brother is a doctor with privileges at a highly regarded hospital and consulted with their neuroradiologist for the diagnosis.
As far as weight gain, that can be kind of a secondary thing with MS. It can be as a result of symptoms preventing you from being active, or from eating comfort food due to depression (another symptom of MS), stress or fear. You might want to really observe your eating habits for a while. If you are overeating, try to figure out why. If you're not overeating, then you might want to talk to your doctor. Perhaps you have a thyroid problem (common in women and I've noticed in MS patients). A simple blood test can uncover that. If it's as a result of not being able to be active, you might have to lower your caloric intake to adjust to the lower metabolism (this is what my daughter has had to do). It might be worth it to consult a nutritionist, especially one who is familiar with MS. Just some thoughts.
My daughter is now 24. She was 19 when diagnosed, a bit on the young side for such aggressive MS. And thanks for the kind words, but I feel like I'm the one who is very blessed to have her! She is truly an inspiration to me.
Take care, my friend!
Julie
HeatherJM
07-22-2004, 03:32 AM
Hi Jean, Julie has given you some excellent advice, I'll back her up! ;) As for the LP, I had one and it wasn't too bad. I think the anxiety is the hardest part! LOL. My doctor, who, get this, is an MD, a ansthesiologist (can't spell that!) and a dentist (super duper busy man!) did mine and he explained to me while doing it that the slower you go and the smaller the needle the easier it is for the patient. I didn't even have a headache afterwords! If you explain your concerns, which are 100% valid, then I'm sure accommodations will be made to ease your anxiety. Good luck! :)
jean b
07-22-2004, 09:22 PM
Julie and Heather-
Thanks for the advice. I am only 25 and all this is a bit much to take on. I pass out when it comes to needles so we will see. I have my second MRI with contrast in two weeks along with a second test the doctor order called a VEPS. If more spots show up I'll have no choce but to do the LP. I have lost weight and can't seem to put weight back on. Everyone thinks thats a great problem but really its not- I hear comments all the time - your so skinny- do you ever eat -I was tested for thryoid problems three times- all negative.
Thanks for the advice. I am only 25 and all this is a bit much to take on. I pass out when it comes to needles so we will see. I have my second MRI with contrast in two weeks along with a second test the doctor order called a VEPS. If more spots show up I'll have no choce but to do the LP. I have lost weight and can't seem to put weight back on. Everyone thinks thats a great problem but really its not- I hear comments all the time - your so skinny- do you ever eat -I was tested for thryoid problems three times- all negative.
Jewel2
07-22-2004, 09:48 PM
Oops! :rolleyes: I thought you meant that you have a problem with gaining weight, like putting too much weight on. Sorry! Have you always had a hard time keeping your weight up or is this a new problem along with your other symptoms? Could it be from stress? Some people have a hard time eating enough when they're stressed. Others overeat. Stress can do terrible things to your body.
It sounds like you have a good plan in place to try to get a diagnosis. I'm sorry you're so young and having to deal with this. I would like you (and any others who read this) to know that even though my daughter is very young and was hit really hard with MS, she still lives a great, fun life. Sure, it has its lousy moments and activities often have to be modified, but the important thing is to never let the MS define who you are. My daughter treats her MS as a nuisance that she just has to deal with, but she goes on living life.
I hope this encourages you as I know the feelings you're dealing with right now. In some ways when you are first looking at an MS diagnosis it feels like you're looking down the barrel of a gun. But the initial terror will pass and you will adjust. Learn all that you can and remember we're here to support you.
Take care,
Julie
It sounds like you have a good plan in place to try to get a diagnosis. I'm sorry you're so young and having to deal with this. I would like you (and any others who read this) to know that even though my daughter is very young and was hit really hard with MS, she still lives a great, fun life. Sure, it has its lousy moments and activities often have to be modified, but the important thing is to never let the MS define who you are. My daughter treats her MS as a nuisance that she just has to deal with, but she goes on living life.
I hope this encourages you as I know the feelings you're dealing with right now. In some ways when you are first looking at an MS diagnosis it feels like you're looking down the barrel of a gun. But the initial terror will pass and you will adjust. Learn all that you can and remember we're here to support you.
Take care,
Julie
jean b
07-25-2004, 10:34 AM
Julie
Thanks so much for the advice. I guess just one day at a time. I have the next two test next week. My numbness seems to get worse if I'm stressed. The other night I had sharp pain in my elbow. Sometimes I question if this is ms or what? I wish there was an easier way to tell. Thanks again for everything - you make it easier to cope.
Thanks so much for the advice. I guess just one day at a time. I have the next two test next week. My numbness seems to get worse if I'm stressed. The other night I had sharp pain in my elbow. Sometimes I question if this is ms or what? I wish there was an easier way to tell. Thanks again for everything - you make it easier to cope.
HeatherJM
07-30-2004, 06:39 PM
Jean, I agree with Julie wholeheartedly! Having MS SUCKS but it's not a death sentence! I still try to do the majority of what I did before, with exceptions, which you'll learn to live with. Whatever you are diagnosed with, the first lesson to learn is to listen to the signals your body is giving you. It takes a while, but you'll catch on.
Good luck on your tests and let us know the results! :) Keep your chin up!
Good luck on your tests and let us know the results! :) Keep your chin up!