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    Old 12-08-2013, 12:51 PM   #1
    DrowningGirl
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    Worried I have MS

    Hello,

    I'm new here and currently undergoing testing for MS. I have a lot of the symptoms of MS but they seem somewhat different or far less severe than what I've read about. I know that doesn't mean anything and that you can't diagnose by listing symptoms alone.

    I am curious to hear what others experiences have been and how the symptoms can vary in terms of severity. I also have had a doctor who has dismissed my concerns for a couple if years. I finally got fed up and switched doctors but par of me feels like maybe I am overreacting.


    So, here is my long list of symptoms:

    Stabbing pains - mostly in fingers but also in toes and other areas of my body. Feels like a needle stuck in me and left there. Sometimes it's a throbbing where I feel the stabbing for a second and it goes away for a second, then comes back, and goes away, etc. this can last a few minutes or days and is painful enough to keep me awake or have difficulty concentrating. Sometimes it's just like a constant pin ***** or knife pain.

    Numbness in tips of fingers - this comes and goes and maybe feels more like a loss of sensitivity on the very surface.

    Hands / fingers tingling, falling asleep - my ring finger and pinky fingers are always feeling like they've fallen asleep and I try shaking them out but nothing works. That half of my hand feels different but I don't know how to explain it.

    Hands, wrists, and elbows ache and throb often. Sometimes it feels muscular and sometimes skeletal. Other times it is like patches of pain that come and go for a minute or two. It's like a radiating pain that feels hot and throbs. Very difficult to describe. Occasionally it lasts a while but usually it's more like it moves around my whole body, though it does tend to bother the same spots over and over, like my arms and hands/fingers.

    Hands/toes usually cold, sometimes extremely so.

    Weakness in arms and hands, arms feeling very heavy, like I canít lift them. I've also have seen my hand strength obviously diminish over time. I can't open jars or packages and have very little finger strength to pull on things. This is getting worse rapidly.

    Stiffness, throbbing, and sometimes whole body pain where it feels like every joint or muscle hurts

    Hip pain - I've had this for a while but recently it's been getting significantly worse to where I feel it ally he time. I also have sciatic, ankle, knee, and joint pain.

    Muscle spasms, legs jerking and twitching. Occasionally fingers twitch. This is minor and does not happen more than a few times a month and it's typically short lived. I've had RLS for years but the twitching/jerking was never an issue before and the frequency of pain has picked up.

    I've also had twitching eyelids and a muscle on my lip twitch for days at a time. Feels like someone attached a string to me and keeps tugging on it.

    Trouble urinating, canít get myself to go and then canít empty my bladder completely, then will leak when I stand up. Sometimes have to urinate immediately, several times in a row. So urgent I cannot wait without experiencing extreme discomfort or pain.

    Headaches - I've had for years but has been more frequent and more painful lately.

    Blurry eyesight occasionally in left eye that I cannot refocus. Also, jerky movements from side to side for a second, then it stops.

    Occasional sensation of something wet or cold touching me when there is nothing.

    Occasional sensation of feeling itchy inside my muscles, not on the surface, that wonít go away.

    Lack of coordination and balance. This has been a problem for a while but is worse lately. I'm constantly bumping into things, stumbling, falling over. I knock my hands and arms into stuff when I'm moving around all the time.

    Can't remember anything. Have to write everything down. Never a problem before but lately I have to refer to notes to do tasks at work that I do daily. I forget conversations that I've had or even doing things I've done.

    Depression - not new but definitely worse lately.

    I was diagnosed with IBS a few years ago and am mentioning it here because I've read that people with MS can have some bowel issues.

    Numb lips. New symptom this week. Happened twice and lasted a couple hours each time. The second time my chin was partially numb.

    Itching, specifically itchy feet and hands. Itch on my foot that is extreme and will not go away from anything. It comes in suddenly and goes away just as suddenly, seemingly for no reason. Sometimes it lasts for a few minutes, sometimes for days on end. The rest of my body is often itchy and I'm scratching all over.

    Ringing in ear, can be very bad sometimes, it will just "turn on" at times. Recently hearing/feeling tapping in ear on ear drum.

    Extreme fatigue. I'm exhausted all the time. My limbs feel like jelly from very little activity. I feel like I need more and more sleep and don't wake up refreshed. I often wake up in pain as well.


    If you made it through all that, thanks for reading! Sorry it was so long. I don't know exactly what I want to hear from people. I guess I want to know that I should be perusing this. My symptoms are not debilitating but they are bad enough that I am uncomfortable most of the time and I have some sort of pain pretty much all the time. However, it's only occasionally so bad that I really can't focus on anything else.

    Does it sound like this could be MS? I feel a little silly complaining about symptoms that I can deal with. How did it start for you? How do MS symptoms vary from descriptions online?

    Thanks so much for your time and feedback.

     
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    Old 12-08-2013, 01:00 PM   #2
    MSJayhawk
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    Re: Worried I have MS

    DrowningGirl,

    Welcome.

    What kind of doctor is checking for MS for you? If you are seeing an MS Specialist (a neurologist whose specialty is MS), then relax and let them do their job. You have a laundry list of symptoms, but just as the symptoms can mean MS, they can also mean one of over 400 MS mimicries or the combination of MS and something else. At this time, you are undergoing testing and for that- Kudos. You are moving in the right direction.

    What testing have you had to date?

    Thanks for sharing. I assume that the list you shared here was also shared with your doctor? Do you have any other questions? You may have something easily treated, so stay positive. Should you learn that you have MS, it is not fatal and you can still enjoy the blessings of life.
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    Old 12-08-2013, 01:10 PM   #3
    DrowningGirl
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    Re: Worried I have MS

    Thanks for the reply.

    I have not had any tests done yet except bloodwork which I am still waiting for results on. All my tests are scheduled for this week. I am seeing a neurologist but I am not sure it's a MS specialist. The neuro is part if the same practice as my PCP. She is running extensive blood work to test for a variety of things including mineral or vitamin deficiencies and Lyme disease. The neuro is giving me a nerve test this week and I am also scheduled for an MRI this Tuesday. I am getting X-rays done of my hands and fingers to check for arthritis or carpel tunnel.

    I think they want to see the results before they move forward. When I started looking for a new doc I found this place that specializes in early diagnosis and treatment of difficult to diagnose illnesses. So, hopefully they will work hard at figuring this out, unlike my last doctor. I did share that list with them as well.

    I guess I just got freaked out when I heard MS, but looking at the symptoms it kind of gave me the chills. At the same time if eel like I'm nuts for even contemplating that it could be that. I know it's a huge list of symptoms. It's part of why I feel crazy.

     
    Old 12-08-2013, 04:48 PM   #4
    MSJayhawk
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    Re: Worried I have MS

    DrowningGirl,

    If MS has been brought up as a possibility, it is important to seek out an MS Specialist to get an accurate diagnosis. While there are some qualified neurologists, many do not have relevant experience with MS or they include MS as one of many fields. For the long term care, a neurologist can certainly help, but for the initial diagnosis an MS Specialist can get you through the diagnostic process.

    The blood test has many specific tests for MS mimicries which can include such things as vitamin D deficiencies or Lyme Disease. If Lyme Disease is excluded, it is important that the lab which tested the blood sample for Lyme Disease is experienced because many labs do not have the experience.

    I am glad that you shared your list with your current doctor. Your list would naturally have brought up the possibility of MS. These tests you are having now can easily identify many well known MS mimicries. If your x-ray and blood tests are negative, you will be moving towards MS BUT also you will still have many mimicries to eliminate. An MRI with and without contrast should be expected and should include your head and c-spine at a minimum.

    There are no tests which can specifically identify MS. Your doctor will have to eliminate everything you do not have and then, if you meet the Revised McDonald Criteria, then you would be diagnosed with MS. You still have a long way to go.

    You say you feel crazy. Many people have experienced or are experiencing the same feelings. You are not alone.
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    Old 12-09-2013, 10:03 AM   #5
    mindi111
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    Re: Worried I have MS

    I can relate so much to your story DrowningGirl. I was diagnosed just days ago with MS after having some MS-like symptoms. I did a lot of my own research too, and had that same feeling you're having now when MS started popping up on the search engines.

    Many of your symptoms certainly are in line with MS, however as Jayhawk said, 400+ other mimicries have to be eliminated first before they can make that diagnosis. It seems to me like you're on the right path and doctors are doing their due diligence to get you looked after.

    I'm still very new to this side of MS (the after-diagnosis side!) so I usually just let the pros answer posts. But I can relate so much to how you're feeling right now I think. Feel free to message me if you need someone who was in your shoes not long ago to talk to

     
    Old 12-09-2013, 04:48 PM   #6
    MSNik
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    Re: Worried I have MS

    Hi Drowning Girl,
    I too, wanted to say hello and welcome you to healthboards. Im not sure that you are headed towards MS- the first half of your list actually sounded alot more skeletal, or possibly even a herniated disc or pinched nerve....it would cause ALL the numbness and twitching you described....but then you got to the bladder issues and the skin sensations, and then it sounded more neurological in nature- that doesnt necessarily mean MS.

    As everyone else has stated, there are 400 diseases which mimic MS and youll need to get them all ruled out before you should be wondering about MS...but it also sounds like you have quite a few tests in front of you, and those should be telling.

    My suggestion is to run with what you are doing now- ask for copies of ALL tests you have done- blood work, MRI films and reports, Xrays (copies and reports) and hang onto everything...if at some point, you are referred to a specialist, youll need those in your arsenal to save both time and money and move forward.

    Let us know how the testing goes...
    Nikki
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