Discussions By Condition: I cannot get a diagnosis.

possible ms please give advice

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: yarekim
  • March 13, 2007
  • 08:16 PM

I am 25 years old, female and desperate for someone to help. I have been experiencing crazy symptoms for 10 years and still no diagnosis. It started with shoulder joint pain to the point that I literally had to use one arm to move the other. I also started having tingling and numbness in my hands and feet. At this point I was tested for lyme disease (neg) and had MRI of my low back which came back with signs of degenerative disk disease (no follow up has ever been done). For 4 years I suffered with no health insurance and symptoms continued to get worse over time. By 2 years ago I began to see doctors again (repeat bloodwork- all normal). Started getting tremors in hands and unsteady walking and vertigo all the time. New doc 1 1/2 years ago sent me to a rheumatologist who said I was too young to see him and to a neurologist. Neuro did EMG (sensory nerve damage on right side- no follow up) and MRI of my neck (primary care doc said possible spinal stenosis but again no follow up) and brain MRI (normal). Since then all new symptoms- spasms all over that can last for days VERY ANNOYING, biting the inside of my mouth when I talk or eat, EXTREME fatigue (probably chief complaint) night sweats, unsteady gait, dizziness, joint pain, memory problems and blurred vision. I can't get back to a new Neuro until June and my primary care doc seems fed up with me. I have been doing MS research and heard that open MRI's are not good for DX of MS. I would like to repeat the MRI's and also have a spinal tap. How do I do that when docs seem to think I am making all of this up? All of my docs say that there are definitely symptoms but don't know why and no one has offered any treatment of any kind. How long am I supposed to suffer- I feel like I am losing my mind. Please help.

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5 Replies:

  • Lyme Disease is a lot like Ms . I know how frustrated you are. I was thought to have had ms, then dx'd with Fibro. But it turns out { after much of what you have gone through} I have chronic Lyme. Check out this site, lots of help & info lymenet.org
    Anonymous 42789 Replies Flag this Response
  • visit www.ahummingbirdsguide.com read symptoms pagemyths pagemedical facts pageoutbreak in 80'shundreds on this site alone with ME symptomsNo diagnostic code in USA for ME...only Chronic Fatigue SyndromeWhy???????????????? still working on that one... visit www.ncf.net.org it will give info on CFS...that's what we call ME in the USI only know all of this because I've been sick for yearsgoogled symptoms..diarrhea..flushing...nightmares...nightsweatsI found hummingbird sitetook info to my docevery other disease known to mankind ruled out by nowhe is doing immune bloodwork testingto test for ME/Chronic Fatigue Syndromedon't be fooled by name...I was and it took me a long time to get this infoMS is confused with ME and so is Lupus, Fibromyalgia, Lyme disease and many others Be Well and God Bless..mommy cat
    mommy cat 1654 Replies Flag this Response
  • yarkim...also...all of us have been sick for years and unable to get a diagnosis that was one of the first things that occured to me when I first looked at this site so many peopleso many similar symptomsso many being accused of psych problemsso many being called hypochondriacsso many friends/ family members with similar sxso many of us girls went to the same high schoolso many of our mothers have Fibromyalgiaso many docs passing so many patients on to the next docso many prescriptions of Prozac filled a yearso many psychiatrists living in nice homes because they have so many patients it doesn't end...it's not just you...it's all of us...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I completely understand.. I am a 25 year old female that has started experiencing strange symptoms over the past 8 months after a bad eye infection (as a result of my contact use..darn contacts). My symptoms include: changes in vision (double vision), little spasms in many places over my body (hands, feet, eyelids, arms..) sometimes you can see it pulse (as if it would have a heartbeat), my hands and feet are cold a lot of the time, and I get tired very easily. I feel that everyone around me doesn't understand what I am going through and kinda dismiss everything because I have had one CT scan and two brain MRI's-all coming back normal. My GP told me I might be experiencing the first signs of MS. That was the last think I thought I was going to hear. My neuro is not jumping to that diagnosis or potential diagnosis yet. He told me, I dont think you have MS. He said the symptoms would apear for much longer (possibly days). Mine come and go and last very short (30 seconds- 1 min). Its really frustrating. I have heard different opinions on Open Vs closed MRI's. I have had one of each. My neuro told me that the Open ones you have to stay much more still and you are in the machine for a longer period of time since it has a lower force (I think that's how he explained it). I did notice that the closed one was much faster, and I think its preferred (although I wouldn't dismiss the accuracy of open MRI's) but might be a little better. If they didnt believe in the accuracy of them, then why would they be in operation? When was your last MRI? I have not had a spinal tap (although it sounds like a lot of fun LOL). But, if it gave me a diagnosis, I would have one (ouch). A friend of mines dad recently got diagnosed with MS and it took him a long time to get the diagnosis. He got diagnosed around the same time I started having my symptoms.. wierd. I know he had symptoms for many years. I think they finally diagnosed him after the spinal puncture. There is certain criteria needed to diagnose someone with MS-which can sometimes be a long and frustrating road. Just know that there are other people that are experiencing what you are having. Try not to worry, although easier said than done. Remember one day at a time. Also, if you feel frustrated by your doctor get another one. Life is too short to be wasting your time on doctors who either don't believe you or care about your well being.
    Anonymous 42789 Replies Flag this Response
  • Dear above unregistered...ME/CFS many strange unrelated symptoms look in this forum, many people are having them best to you...mommy cat
    mommy cat 1654 Replies Flag this Response
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