Discussions By Condition: Nerve conditions

I think I have MS, doc thinks I am having seizures. Help

Posted In: Nerve conditions 26 Replies
  • Posted By: Anonymous
  • February 15, 2007
  • 06:13 PM

I am 34, mother of four. I have had episodes since I was 21, but then it would be years till the next one. I have had 7 major episodes since age 21 to Feb of 06. But since Feb 06, it has been prety much non-stop, a few good days in there.

My symptoms are muscle pain(mostly on left side of body, mosty thigh) numbness, stumbling, droping my left foot when walking, trembling hands, extream fatigue, twitching muscles(sometimes severe), blured and warped vision, urin retention. When I am realy bad I can hardly walk to the bathroom, and my speach gets slurred and slow.

I went to a doc in June, did MRI w/o contrast. Showed nothing, no lesions. Her conclusion..." I think its just stress" Wow.. are you kidding, stress.. wow it can cripple the healthy person.

So now doc #2 thinks I am having partial complex seizures, a kind of epilepsy.
I don't agree at all. I have done tons of research and it just doesn't add up.
Not to mention, if this is siezures, I am haveing them nonstop, for over a year. I am never incoherint or unconcious, or confused.

I need help. I need an answer. My husband and kids are all anxious to get answers, but I feel like I am on a wild goose chase. I can't wait years for a DX. Should I push for another MRI with contrast and a spinal tap? Help...

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26 Replies:

  • Don't you just love docs who say "must be stress"?! Such garbage! Find a doc who has worked with MS, or better yet find an alternative pracititioner who has worked with MS. I understand it is hard to diagnose. Do you currently take any medications? Are you on birth control pills or take any other type of hormonal birth control? More testing should be done. But consider trying acupuncture or chiropractor in the meantime as they can be very helpful. Best wishes.DOM
    acuann 3,080 Replies
    • February 15, 2007
    • 08:31 PM
    • 0
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  • I think this could be stress.It is reasonable to test further for MS with spinal tap, evoked potentials, contrast MRI fo the brain and cervical spine, but a previously normal brain MRI tends to argue against MS.
    Anonymous 42,789 Replies
    • February 16, 2007
    • 07:43 PM
    • 0
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  • Hi, Its me, the original person of this post. to answer some questions, I am not on any hormones or any kind of medication. And yes I know that typically a negative MRI means that you most likely don't have MS. But I also have met and talked to over a dozen people who had clear MRI's for years and progressive symptoms and several relapses, before they had anything show up . One person was diagnosed though Spinal tap five years ago, and just this year her fist lesion showed up. The thing is, you cant get treatment with out a diagnosis. And ms is not something to wait around for five years with symptoms getting worse, when all you need is a doctor to listen to you and do the ***n test.
    Anonymous 42,789 Replies
    • February 16, 2007
    • 11:52 PM
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  • But you've had symptoms for 14 years; almost without question, a brain MRI at this point would be abnormal if you had MS.A spinal tap is a test that carries at least slight risk to you, so I understand why a doctor wouldn't want to pursue that if he/she really doesn't think you have the disease. Evoked potentials - somatosensory, visual, brainstem - are non-invasive ways of looking for MS, and, if normal (along with a normal brain MRI), I think would effectively rule out that concern.It could be all of your symptoms are not due to a single cause; left leg and foot problems could be due to a pinched nerve in the back, for instance. And I wouldn't discount totally the idea of "stress." It can do funny things.
    Anonymous 42,789 Replies
    • February 17, 2007
    • 04:19 PM
    • 0
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  • My 24 yr old daughter started having seizures when she became pregnant. She is on Dilantin and still having seizures. The benefits of Dilantin out weigh the risk of a seizure during pregnancy.I have wondered if she has a pinched nerve? She has a cyst on her right ovary that will be removed surgically on March 1st. She is only 17 weeks along in her pregnancy and has had 4 seizures.Any advice?
    Anonymous 42,789 Replies
    • February 20, 2007
    • 07:33 PM
    • 0
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  • I don't know if you will get this as the last post was a few days ago. I have also had MS symptoms for a few years and the doctors I've been to have been less than helpful. Please keep getting tests. We have to be aggressive with our own health care as most doctors do not spend enough time with us to know what is really going on. Keep a record of all of your symptoms and when they happen and how long they last. Keep trying to find the right doctor. I was told that I was too old to develop MS despite the fact that my mother and sister have MS and developed it in their 50's. Doctors do not often have the time or interest in people with symptoms of MS that do not present clinically according to the accepted criteria. I have been in limbo with this for a few years and understand the frustration of not being listened to. Do research on the internet. I do go to alternative practioners and it helps. Please don't give up. I won't if you don't.
    Anonymous 42,789 Replies Flag this Response
  • Please do not listen to anything Shula or Acuann tell you. My sister just passed away because Shula and Acuann told her that her doctor was wrong and she did not have a serious condition. Acuann even told her to get acupuncture to get healed. These people are going to be investigated for practicing medicine without a license. Shula and Acuann are specifically wanted in connection with my sisters homocide. Thats right homocide. If she would have listened to her doctor instead of these internet quacks she would still be here today. Rest assured I will do everything in my power to put these two behind bars and shut this website down for good.
    Anonymous 42,789 Replies Flag this Response
  • I understand what you are going through.I have been sick for 5 years.It started with feet pain and pain in my chest that dr's said was pleurisy .Well 5 years later I still have "pleurisy" .Then I had terrible swollen joints and severe muscle pain.Now I can't feel my legs. Some times I can drag myself to walk and other times I can't feel them at all.I also have slurred speech.I just had my first MRI with contrast on my head and entire back and they said it was normal. I have not had a spinal tap yet.It is hard to be suffering and not know what is wrong.It is hard for other people to understand.Please know that you are not alone.I pray you find out soon.
    Anonymous 42,789 Replies Flag this Response
  • this sounds bad but i'm so glad i'm not alone i have also had syms but mri was nor. problems have gotten much worse i have given drs one last chance and am having testing done today 3days really will register when on sec site
    Anonymous 42,789 Replies Flag this Response
  • Just wanted you to know I am going through the same thing. I lost my job in Oct. 06 have not been allowed to drive or work was told I have epilepsy but in Tx that does not qualify you for any help financially. I recently changed doctors, and now I have epileptic spells cause buy other stuff and a nerve disorder that we will "worry about later". In the mean time my 6 year old doesn't understand why we can't go to chuck e cheese once a month like we used to and why we don't have any money to buy groceries. I just now (april 07) got her to understand mommy can not drive a vehicle for any reason - that I was told if I did and I was caught I would got to jail. how fun.So everyone out there you are not alone - I am sooooooo glad I AM NOT ALONE!!!
    Anonymous 42,789 Replies Flag this Response
  • Well at first I was nervous that it might be ALS but I checked it out and it doesn't quite match. Obviously nervous system...do you take any medications?
    Anonymous 42,789 Replies Flag this Response
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  • I was wondering if it could be ALS at first but when I checked it out, it didn't quite match...It's obviously your nervous system. Have you been taking any medications?
    gtdevore 2 Replies Flag this Response
  • I am a registered nurse (ER & Neuro) and one of my best friends has MS. I tend to agree to the fact that if your MRI was clean, especially after years of symptoms, you probably don't have MS. There are sooooooo many neuro disorders that often appear vague at first like ALS (Lou Gehrig's Disease).....ANd don't laugh, but do you drink diet soda or anything with Aspartame/NeutraSweet? There have been folders upon folders of studies done for people with MS symptoms &/or MS diagnosis that within 6 months of totally giving up all forms of Aspartame/Neutra Sweet have had their symptoms resolve. It is also at the top of the list for the cause of Migraines! And I can speak from experience on that one. I will NEVER drink another diet soda or Crystal Light or Diet Koolaid/Jello/Diet FLavored Water sweetened with Aspartame as long as I live!!!!!!!! It was amazing the difference once I gave it up.Look for a good neurologist or perhaps a holistic medicine doc and keep searching until you get answers of some kind. (Spinal taps are not really definitive for MS and CT Scans & MRI without contrast are the scan of choice for MS- contrast is not needed for that diagnosis). I will pray for you and SERIOUSLY, give up the Aspartame/NutraSweet today!
    Anonymous 42,789 Replies Flag this Response
  • I was diagnosed with epilepsy, with several different types of siezures, about four years ago after my daughter was born. I had a grand mal at work in the bathroom and no one found me for four hours. That is when I was diagnosed. My doctor moved and sent me to someone else who said I didn't have epilepsy. Now My husband is in the rmy and we have better health care and my new docor said that the leg problems I have cannot be caused by the epilepsy, that is not one of the side affects. I then found out that I have ms on both sides of my family and the went on to do all the tests. I have not yet been diagnosed but there have been times when a person can show neg. on all the tests due to remylenation. He also said that there is the possibilty that I have ms and it is causing the siezures but it could also be that I have both and they have nothing to do with each other. I have known a few people with ms and they have told me to try and get around 10 hours of sleep, if not possible try to take a nap. If you have a lot of things to do try to get one thing done at a time and take a rest between each one. I found that all of these things do help. I have also goten to the point that on my bad days when I have to do the shopping I grab one of the wheelchairs they have and never go alone so someone can push the cart. Hope everything goes good and you get some comfort with whatever they conclude.
    Anonymous 42,789 Replies
    • August 30, 2007
    • 05:24 PM
    • 0
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  • I was told that there was NOTHING wrong with me three times and that I was fine. They took MRI's Spinals and sent me home... after 7 years of stumbling around I ended up sueing the my job over a workmans comp issue... to make a long story short, my job counter sued me and said that because of my long health issues I was a walking disaster... anyway I ended up with my Doctor's records that I had been trying to get my hands on for a long time... the MRI's that I had been told were fine were actually NOT fine. They all showed WHITE MATTER DISEASE. For seven years they had just been following it... demand to see your MRI's. Make sure there is NOTHING on them. When they say you are okay. Make sure you are. Don't wait seven years. By then it's too late...
    Anonymous 42,789 Replies
    • September 7, 2007
    • 11:40 PM
    • 0
    Flag this Response
  • hi there! i'm sorry to hear about your symptoms, and the frustration and confusion you've experienced when dealing with doctors. i can certainly relate to that! but i won't go into my own story.what i wanted to tell you is that a friend of mine had symptoms similar to yours. she was even in a wheelchair for 2 years. she was young (early thirties) at the time, the onset of her symptoms was quite sudden (she was previously healthy, active, and ate well), and medical professionals weren't particularly helpful.she finally visited a naturopath, who tested her for food allergies. turns out, she's allergic to nightshade vegetables (e.g. tomatoes, eggplant, bell peppers). once she cut these foods out of her diet, she was able to regain her ability to walk, and her health. she's now perfectly healthy, and even goes salsa dancing regularly.i highly recommend alternative health practitioners like naturopaths and acupuncturists. these practitioners have a holistic view of the body and health -- they view the person as a whole organism, rather than trying to treat individual symptoms. my own health story is long and sordid, and the places where i've been best able to find answers and effective treatment have been with my acupuncturist and naturopath.best of luck to you in your search for answers and good health!
    Anonymous 42,789 Replies
    • September 8, 2007
    • 07:23 PM
    • 0
    Flag this Response
  • Hi, I am 21 year old boy studying and I have similar symptoms as you have some are blurred vision, chronic fatigue,body pain all day, treambling of hands, weakness in hands and arms , low voice, and slowly slowly I am loosing interest in everything. just like light slow romantic music in evenings :-).I have done enough research and gone to dozens of docs, but none is able to understand what is happening!!I have lost my wish to live but I am living for my parents as when they will grow old no one is there to take care of them . So I am trying to find out cure of this disease and to some extent I am successful in doing so, by making changes in my diettake my suggestion and include fresh raw fruits and veggies in your diet, and take at least 3-4 times juices of fruits in a day.don't take too much protiens in a day . not more than 2 eggs a day!, and lower your cheese, chicken,fish intake!If you want to share some symptoms,dietry changes or tell me something then you are most welcome to write me in at Shivankoo_sharma@yahoo.co.inor post your reply here only
    Anonymous 42,789 Replies
    • September 25, 2007
    • 07:37 AM
    • 0
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  • Hi, I have been under hospital observation for 22 days after my right hand just lost its power, I was not able to move my fingers. then after doing MRI, 10 times nerve conduction and CT scan(chest) and many blood test(lft, HIV and many more). They could not reach to a conclusion and sent me home, by giving multivitamin tablets.Every test came out to be normal, except nerve conduction which showed demyelation in my both hands and some parts of feet.but the thing that is unbearable is the chronic pain in the body, even after taking pain killers(medicines) the pain does not stop.If there is demylation in whole of the body. how can the MRI(brain) be normal?Can any one tell?.
    Anonymous 42,789 Replies
    • September 26, 2007
    • 07:59 AM
    • 0
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  • I am so glad that I accidentally found this website! I too am having the sane symptoms.... I am numb on my left side- started in my face and is working its way thru the entire left side, now I am having severe pain in my legs, my arms are almost non functional and have severe loss of memory and concentration. All my Mri's are clear too...... I am so confused. I am 38 - I have 2 children my husband is frustrated....... where do I turn????? Thank God I have found some others that are experiencing the same things. Please someone contactt me mistxas@aol.com- I need a support system. Be specific in the subject line as I do screen my emails.Thanks
    mistxas 1 Replies Flag this Response
  • hi there! i'm sorry to hear about your symptoms, and the frustration and confusion you've experienced when dealing with doctors. i can certainly relate to that! but i won't go into my own story. what i wanted to tell you is that a friend of mine had symptoms similar to yours. she was even in a wheelchair for 2 years. she was young (early thirties) at the time, the onset of her symptoms was quite sudden (she was previously healthy, active, and ate well), and medical professionals weren't particularly helpful. she finally visited a naturopath, who tested her for food allergies. turns out, she's allergic to nightshade vegetables (e.g. tomatoes, eggplant, bell peppers). once she cut these foods out of her diet, she was able to regain her ability to walk, and her health. she's now perfectly healthy, and even goes salsa dancing regularly. i highly recommend alternative health practitioners like naturopaths and acupuncturists. these practitioners have a holistic view of the body and health -- they view the person as a whole organism, rather than trying to treat individual symptoms. my own health story is long and sordid, and the places where i've been best able to find answers and effective treatment have been with my acupuncturist and naturopath. best of luck to you in your search for answers and good health! Yes! Thanks for your post. As a holistic practitioner I see a lot of patients who have tried most everything else and are desperate when they arrive at my clinic...it is a great joy to see their suffering diminish after treatments! I am an acupuncturist, herbalist, and certified NAET practitioner. These modalities can really make a difference! Best wishesDOM
    acuann 3,080 Replies Flag this Response
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