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    Old 12-16-2014, 07:59 AM   #1
    78152
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    Scared ... looking to talk

    Hello all,

    This my first time on this board, so thank you for listening/reading my message.

    I am concerned/scared that I might have MS. I am a 36 year mother of a 4 yr old who works full time. For the past year, I have had "on and off" dizzy spells and chest pains. I recently went to the ER and they DX me with vasovegal syncope ( blood pools at the bottom of my legs.) They advised to drink a lot of water and you will feel better. I was also dx with TMD.

    A few weeks ago, I started with an incredibly strange symptom that when I touched by forehead, I would get a shooting pain down my neck ( on the same side). I called my GP and scheduled an appt. By the time the appt arrived, the pain had subsided, but I still had a neck ache, and fatigue/tingling in my right arm. The doctor ordered a brain MRI and blood work. The tingling will come and go throughout the day.

    The brain MRI came back clean, and the blood work showed vitamin D deficiency so I was told to go on a daily supplement of 2000 units a day. Since then I have had tingling/crawling sensations throughout my body ( that seem to go away when I am busy) so the GP referred me to a neuro.

    I went to the Neuro and he did a complete neuro exam and said "You don't have MS" based upon a clean brain MRI and clean neuro exam. I am concerned b/c he didn't even mentioned having a spinal MRI done b/c based upon my brain and neuro exam results. In addition, I have had a buzzing feeling in my fingertips for the past 3 days that is really concerning me.

    I know I am probably being paranoid, but can anyone offer guidance/reassurance of what is going on?

    Thank you in advance for any help you are able to provide.

    Thanks!

     
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    Old 12-16-2014, 08:54 AM   #2
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    Re: Scared...looking to talk

    Hi 78152,

    Quote:
    and said "You don't have MS" based upon a clean brain MRI and clean neuro exam. I am concerned b/c he didn't even mentioned having a spinal MRI done b/c based upon my brain and neuro exam results.
    As a guess, Your Neurologist didn't do a MRI of the spine because your neurological exam was fine. If there had been damage done to the spinal cord from MS your neurological exam would not have been normal.

    I have MS damage to the spinal cord and have from my very first neurological exam (I had clear MRIs). I have never completely passed a neurological exam.

    If you are still concerned about a problem with your neck you can ask your PCP about imaging. There can be mechanical problems with the back but this would have nothing to do with MS.

    It is possible your current diagnosis of TMD, vasovegal syncope and your vitamin D deficiency could possibly account for your symptoms, but I don't know.

    When talking about abnormal sensations there is a multitude of causes some of which can be due to vitamin/mineral deficiency.

     
    Old 12-16-2014, 09:04 AM   #3
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    Re: Scared...looking to talk

    78152,

    Welcome.

    A vitamin D deficiency accounts for up to 15% of patients who present with MS like symptoms. It is a major MS mimicry. Vitamin D deficiency can also affect MSers too. I take 1000 iu per day of D3 to maintain my D level at mid-normal because my doctor wants me at that level.

    The MRI and the neuro exam are two hurdles to cross when undergoing a diagnosis of MS. If your MRI was clear and read by an MS Specialist or a doctor with MS experience, then I would feel comfortable.

    After your D levels return to normal, you might need 3 - 6 months for your body to fully recover. While maintaining your D levels, if you have symptoms returning, then I would encourage you to revisit the doctor.

    MS symptoms generally are long lasting (24+ hours). While you are supplementing your D level (I assume this will be a lifelong necessity), keep a symptom journal. At the 3 - 6 month mark from the time your levels were normalized, then make a note and look for any new symptoms or if the previous symptoms are returning. At the first symptom, then contact your doctor.

    About 5% of MSers present with no lesions on their brain MRI. While I would not summarily dismiss you, statistically, things are less like MS at this point I believe. Give the D3 supplementation time to help you and put your worries aside. While you are recovering, if you have worries or questions, we are here for you. Worry and anxiety are things you want to avoid because they can cause MS like symptoms too.

    Thanks for sharing with us.
    __________________
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    Old 12-16-2014, 10:27 AM   #4
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    Re: Scared...looking to talk

    Thank you both for your quick reply! I am not sure who read by brain MRI, but I was advised that it was clean. ( The nuero unfortunately didn't have a copy at the time of the appointment, but relied on the notes from my GP.) He advised he would get a copy and follow up if needed.

    I guess I am just concerned b/c I continue to have the symptoms (slight dizziness, fingertip tingling, slight pain on the right side of my face) and I have read ( of course on the internet...which is terrible) that people can have clean brain and neuro exams, but have spinal lesions. I am trying to take some comfort that the doctor said I don't have MS and I am less likely than the general population b/c I have had the brain MRI and neuro exam.

    I have requested of my GP to get a neck/Spine MRI done b/c I have taken several spills several months ago (but I would of thought I would have felt the effects immediately if this is the result of an injury).

    So, again just scared because I continue to have the symptoms.

    Thanks again

     
    Old 12-16-2014, 11:15 AM   #5
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    Re: Scared...looking to talk

    78152,

    No worries.

    The only thing would be to follow-up with who saw and read the MRI. It should be read and cleared by an MS Specialist, I think. If the report is given a "clear" by way of the Radiologist, then I would ask for a consult with an MS Specialist.

    If you have had D deficiency, it is difficult to know how long you had it prior to your symptoms presenting. It is, however, reversible, and your normalcy should return over time. It is not an overnight fix, but as your D level returns and maintains a normal level, you will start to heal. If you are taking 2000 iu per day, you might consider purchasing the 1000 iu capsule and taking them at your morning and evening meals. This would allow for more absorption and less possible waste. Sunshine exposure for 10-15 minutes helps too as your body will absorb and store the Vitamin D to use as needed.

    Statistics of MS would show that the head and C-spine are the most likely places for lesions due to MS. If your symptoms continue, the MS Specialist would likely order a t-spine and L-spine MRI. My MRIs now consist of Brain through t-spine since the MRI in 2002 found active lesions on my t-spine.
    __________________
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    Eternally blessed and eternally optimistic!<><

     
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    Old 12-16-2014, 12:07 PM   #6
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    Re: Scared...looking to talk

    MSJayHawk - How do you remain so positive? You are awesome! I know that having MS is not terminal/fatal, etc; however, there is some uncertainty to it that scares me. I have such a young daughter and I would like to be able to participate in her growing up ( playing sports, etc.). Also, I am very career oriented so I am afraid that this will affect my career ( i.e due to fatigue ( which I haven't really experienced) or balance issues, etc.) Again, I appreciate all of your help.

    I have scheduled a second opinion with another doctor just for peace of mind. The neuro that I saw was supposed to specialize in MS, but it just concerns me that he didn't have the MRI before hand .

    Thank you again. I am trying to keep my head up for my daughter and husband.

    Thanks,
    Carie

     
    Old 12-16-2014, 12:43 PM   #7
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    Re: Scared...looking to talk

    Carie,

    I attended a 3 day pity party in 1982. It was not well attended, I was the only one there. In 1982 most MSers were told to give up and go on disability. Nowadays 2/3rds of MSers remain employed. Granted, some MSers need to be laterally transferred out of safety concerns. The USMC (and all military) do not have jobs which support MSers. They did, however, stick by me for 2 years to see how things were going.

    I remain upbeat because I am optimistic by nature and my good days outnumber my bad days. Since 1982 the prospects for MSers has improved greatly.

    Also, the knowledge related to Vitamin D deficiency and the results of the deficiency has greatly improved.

    IF you have MS, I realize that your daughter needs Mom, but you will still be there. My youngest was 3 years old when my MS worsened to a point where disability was needed. Just being there is more important than actual participation. Your daughter will see your condition as "normal". My youngest grew up only knowing I was disabled. My oldest stepped in to do many chores. Both see my illness as "normal" and I have always been there for them.

    When I took disability, I took my youngest out of school to home school him. I just finished my schooling with him as he just graduated from the university at 15 yo. I will continue to chaperon him to graduate school and I know that one day I will be promoted to Grandpa.

    MS can affect our lives, but we can still have a career. The one common denominator for a parent with MS is that being a parent is one job we can never lose. Sure, lifestyle adjustments might be needed, but our mere presence as an anchor in our children's lives is a huge thing which remains throughout their lives. It is easy to be optimistic under those circumstances!!

    So long as your second opinion is with someone with MS diagnostic experience, it is a good thing. In 3 - 6 months I expect you will be in better shape. If, however, you should have MS, I would encourage you to maintain a Symptom Journal wherein you can objectively determine your triggers (avoidable and unavoidable), make your career adjustments, and re-set your definition of "normal". The new benchmark against how you perceive your wellness each day with MS will shorten the grieving process.

    Life with MS can be filled with blessings and joys. There is no room for pessimism when your life is blessed!
    __________________
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    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Old 12-16-2014, 12:55 PM   #8
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    Re: Scared...looking to talk

    MSJayHawk,
    May I ask why you had to go on disability? That is my biggest concern, that I will lose the ability to get around. I am normally such an active person, that it will be a "big" adjustment to not being to do that and keep up with my career, husband and daughter. My husband has been a rock through all of this and I don't think I could make it through it without him. I having him tell me I am going to be "OK" and the doctors knows what he is talking about.
    Do you think I would have other symptom than the tingling fingertips and periodic pain/burning in my face. ( I am not sure if this is anxiety related or not).

    thanks again!

     
    Old 12-16-2014, 02:16 PM   #9
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    Re: Scared...looking to talk

    Carie,

    The decision to take disability is personal and not easy. I decided that when my MS worsened considerably, within 2 weeks of the change, I knew that I could not do my job any longer. For me, I was a General Manager and in a position where my job or inability to do my job as I had been doing could have negatively impacted both the company and the employees I supervised too. I wanted to leave with a positive legacy in case I got better.

    After I made the decision to stop, I actually worsened further. It was fortuitous that I stopped.

    In contemplating taking disability, you have to look at your specific job type. If you had MS and you were an airline pilot, this would cause you to have to shift to management or retire because you cannot fly as a pilot with MS. I read an article on the disability decision. Some people push until the end after they have had a problem. Depending on the job, you could endanger yourself or co-workers. Under ADA, your employer has to be able to make reasonable accommodations to maintain your employment.

    The symptoms of MS can vary from person to person. Anxiety alone, if uncontrolled, can or could duplicate the symptoms you shared. Your doctor can help you sort these things. While you are certainly worried, your writing as shared does not indicate an over-anxious point of view. If, however,you feel that you are experiencing anxiety, then your doctor can help you.

    At this time, I think that you should not have any worries regarding MS. I think that you have a career ahead of you still. Give your body time to recover from the Vitamin D deficiency. Things will get better.
    __________________
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    Eternally blessed and eternally optimistic!<><

     
    Old 12-16-2014, 06:13 PM   #10
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    Re: Scared ... looking to talk

    Im going to agree with this. If you had abnormal Neuro eval, the doctor probably would have given you the go-ahead to do a spinal MRI. You wouldnt have lesions on your spine without some significant symptoms which would have been seen on the MRI.
    However, I wouldnt trust a general neuro with a MS dx. I would take your films to a MS Specialist to be sure that they were read right. Most MS specialists do not even want the report from the radiologist- they read their own films.
    On the flip side, what you are describing definately fits the criteria for Vitamin D deficiency...and it takes months to build your levels back to where they should be...its not an overnight fix even though it feels like you are taking alot of supplements. We with MS are usually told to take 1000 mgs a day to maintain. We are also tested regularly for our levels. Vitamin D isnt somethng you can supplement by "how you feel" - its really important to get blood drawn and real levels read regularly.
    Please consult an MS specialist for your own peace of mind.
    I hope you feel better soon.
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    Old 12-17-2014, 08:02 AM   #11
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    Re: Scared ... looking to talk

    Thank you everyone again! Can I asked each of you the first symptoms you experienced that related to MS? I talked to my neuro last night ( he is really good about returning calls/concerns) and he continued to stress he doesn't think it is MS and doesn't believe a spinal MRI is necessary. He noted that it is common for women my age to experience these type of symptoms. I told him that I am still concerned that my fingers ( above the knuckle) continue to buzz ( almost all day, better when I have keep my hands busy) on my ring and sometimes my middle finger and he doesn't seem concerned. My right arm still feels fatigued periodically throughout the day. I am still experiencing various crawly feelings over my legs ( lower and upper) and upper back and he advised that it shouldn't move all over like that. I noticed that the feelings of crawly's seem to go away at night and start back up during the day. Is that normal ( or sign of anxiety related)? Christmas is next week, and I just want to make sure I enjoy it for my family and especially my daughter, regardless of whatever is going on.

    Thank you again for the support!!

     
    Old 12-17-2014, 08:20 AM   #12
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    Re: Scared ... looking to talk

    Hi 78152

    Quote:
    Originally Posted by 78152 View Post
    Can I asked each of you the first symptoms you experienced that related to MS?
    I have had symptoms of MS since childhood. At the time of diagnosis my symptoms were:

    - Bilateral leg weakness - barely able to walk
    - pins and needles - vibrations/buzzing from the waist down
    - hand tremors
    - extreme fatigue
    - lhermittes sign
    - extreme pain - all of my skin felt like the nerves were exposed or on the outside of by body.

    The determination by my Neurologist was the disease was affecting my spinal cord and he was correct.

     
    Old 12-17-2014, 08:51 AM   #13
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    Re: Scared ... looking to talk

    Carie,

    Those symptoms you described and shared are typical for a Vitamin D deficiency.

    My MS presented when I was at least 14 yo. Forensic evidence supported foot drop at 14 (scuffed toes on my shoes and tripping and falling. After that, pain in my hand due to contact with galvanized metal gates on the dairy farm (I avoid direct contact even today) and severe headaches lasting a month or more. These were my earliest memories which could be MS related.

    Please enjoy your holidays and allow the D deficiency levels to reverse. When they reverse, you will start to heal.
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    Old 12-18-2014, 02:48 AM   #14
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    Re: Scared ... looking to talk

    Hi. My onset symptom was waking up with a completely numb left hand and fingers. I tried to shut my alarm clock off (on the left side of my bed) and couldnt feel anything. The pins and needles feeling in it remained with me most of the day and by that night I had called my GP. He thought it was probably a pinched nerve. He sent me for a CT scan the next day. While there, a radiologist was called in to view the images which were popping up, a referral to a neurologist happened (they wouldnt let me leave) and a MRI was done immediately.
    I was told probable MS in under 2 hours.
    The next day I took my films and blood work to a MS specialist and was told yes, MS. I had over 50 lesions (scars) on my brain all in the right places, with the right shapes. They were amazed I hadnt had more symptoms prior. Within 3 days of the dx, I did lose my vision in my left eye. Went to my new MS specialist who sent me to a Neuro-Opthamologist to confirm what he thought, it was optical neuritis. I started IV steroids immediately and thankfully my vision returned. I went on my first DMD immediately. Thats a whole other story.

    I hadnt had any symptoms worth mentioning up to that point, however a very good MS nurse had done a complete history and physical on me before I saw the doctor. During that time I learned that me tripping over my own feet- me losing balance (and falling down 12 steps), me crying when I was blow drying my hair due to heat sensitivity and what it did to me~ were all symptoms which I had ignored. I had also ignored the headaches behind my eyes, the sensitivity to temperature changes (both heat and cold), and a host of other "typical" MS symptoms. As I was (and still am) incredibly active, pushing myself beyond most peoples reasonable limits all day- I just sucked it up and pushed through.

    This is MS for me. And, ten years later, I still have some of those symptoms, only now I know what they are and what triggers them. I try to sleep a whole lot more, Ive changed my weekly exercise program to a program which includes staying in the a/c and using more dumbbells (core strength) and less jumping around. I also try to eat better and concentrate on staying hydrated. Its been ten years and Im still pushing the envelope as far as working too hard, traveling too much and Im under a boatload of stress all the time (all bad for me) but I am proud to say MS is the least of my problems most of the time.
    MSNik
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    Old 12-18-2014, 03:40 AM   #15
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    Re: Scared ... looking to talk

    Thanks again for the comments everyone! MSNik, it sounds like your lesions were on your brain? I was told my brain MRI was clean, and I am just hoping they are not missing something by not have a neck/spine MRI. I keep trying to tell myself that my Neuro exam was clean and my neuro ( who supposedly specializes in MS) is confident I don't have MS. However, I am concerned that he is just blowing me off. I am still experiencing the buzzing/tingling mainly in my finger tips of my left hand that really concerns me. I am having a hard time concentrating at work and feel like I have excluded myself from my family and driving my husband nuts. I have asked my GP for a neck/spine MRI just to be cautious, but I have not heard back from him. I can't stand the uncertainty. ( I didn't sleep at all last night). I really don't know if I am imagining these symptoms or not. I am just scared!

     
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