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    Old 12-27-2015, 02:38 PM   #1
    Majikgirl1997
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    Question odd symptoms for 9 months now ...

    First let me apologize for the length of this post, but I have had a lot going on and do not know where to go. I will preface by saying that I have always been a highly active person, hiking, biking, dancing, camping kind of person. Whatever is going on now has caused me to cease all of these activities for over 9 mos now.

    In August of last year I had an incident occur where out of nowhere my left eye shot inwards causing me to see double. It freaked me out and I had to calm myself down and close my eyes for several minutes in order for it to go back to its normal place. I saw a neuro-opthahlmologist for this and she stated it was likely a migraine in my eye. Ok, I have suffered all my life with migraines so I'll take it. Saw a neuro and he did an mri on my brain said everything looked good but I needed to get my migraines under control.

    Flash forward 7 mos. In March of this year I woke up with painful cramping in the back of my legs, from my hips to my ankles. I went to the beach that day and got really sunburnt. The next few days were agonizing, not from the sunburn but from the leg pain. It got a lot worse and migrated to the front of my legs as well. I saw my regular dr and he did a bunch of blood tests, only things came back odd were high potassium and elevated markers for swelling (I forget the right term they used). ok dr ordered mri's, ct's, more blood work, literally a ton of tests and I should probably be considered radioactive at this point!
    My spinal mri came back with disc bulges but my dr said these are likely from age, nothing to worry about. ok again.
    Symptoms at this point were pain in both legs, major muscle twitching in legs and muscle spasms in my legs when descending stairs (you can actually see these when you watch me walk down stairs), also an odd gait because of the pain and weak feelings.
    Sent to a rheumatologist, she immediately diagnoses fibro, I know enough to know that this is not fibro. Gave me meds to which I was intolerant of and sent me back to my reg dr. ok....
    Now I have had many bouts of forgetfulness with words (cannot put sentences together at times or read familiar words), the muscle weakness has migrated to my arms and hands which now also spasm.
    Had an Mri a month ago on my brain again. This came back with multiple lesions as well as one deep in my corpus callosum. My neuro (which is not the same one as the initial brain mri ) says well we will wait 6 mos and redo the mri and see what it says. omg. Also, now my Vit d and b-12 are low and need supplementation. She suggested I get a second opinion from another neuro through the practice, my appt is set for jan 13.
    I am so frustrated, it has been 9 mos of progressive pain and weird symptoms with absolutely no answers. I cannot take anything that helps the pain and it is seriously effecting my life. I am so close to just giving up at this point but i know that isn't the right answer. I have even put off going back to school because I am afraid I won't make it through well. Here are the many symptoms that I currently have or have had recently, when I get sick the symptoms have become worse for a period of time:
    Severe fatigue, muscle cramping, twitching and weakness in legs and arms, forgetfulness, trouble reading familiar words, dexterity problems in hands, dizziness, passing out, severe itching in feet, right eye peripheral vision clouded at times, eyes crossing, eye tracking is off at times, pain in both legs, especially if I overexert myself. I am sure there are more but this is off of the top of my head.
    I am scared and I don't know where else to turn. My husband and mom seem to think it is ms and I can agree that many of my symptoms fit, but I have also fit into many other things too that have not been correct. Does this sound like ms to you guys? also I have read a lot about keeping a symptom list, should this be done daily or just write up all I can think of? I just want to go into this new neuro with my eyes open and give him what he needs to hopefully make a dx finally. I really kind of wish they would just do the lp and either confirm or deny ms.... Any help or responses are greatly appreciated!

    Last edited by Majikgirl1997; 12-27-2015 at 06:06 PM.

     
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    Old 12-27-2015, 04:30 PM   #2
    MSJayhawk
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    Re: odd symptoms for 9 days now ...

    Majikgirl1997,

    Welcome.

    Migraines can cause lesions. When an MRI shows lesions, the neurologist would have to look at the average size and shape of the lesions to separate migraine lesions from MS lesions (or other lesion causes).

    Having a deficiency of Vitamin D and B12 can also be causes for the symptoms you have been experiencing. You have to allow yourself time to recover from D deficiencies as your body will have to recover to normal levels and then the debilities can begin to reverse. There is no predictable recovery, but you might have to wait for 3 - 6 months after your D levels recover. For you, the recovery could come more quickly.

    Getting diagnosed with fibro is all too often a broad brushstroke. That said, however, there are MSers who have MS and Fibro. I would highly doubt the fibro diagnosis in light of your vitamin deficiencies. I would focus on restoring your vitamin levels and to focus on daily stretching and low impact activities and exercises until you can get a definitive diagnosis.

    I would also encourage you to make sure that an MS Specialist is consulted. A general neurologist is not an MS Specialist. The MRI should be read by an MS Specialist.

    Please know that an LP CANNOT identify MS nor can it deny MS. There simply is no specific test for MS. The diagnosis of MS comes after the 400+ MS mimicries have been eliminated. Afterwards, your results are measured against the Revised McDonald Criteria. Given that 15% of patients presenting with MS symptoms may have D deficiencies, I would encourage you to focus on this until you have your follow up MRI.
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    Old 12-27-2015, 05:13 PM   #3
    Majikgirl1997
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    Re: odd symptoms for 9 days now ...

    The problem is with the vitamin deficiencies is that they did not present until 1 month ago, when I had the MRI done. Prior to that my potassium was through the roof and I was temporarily put on a NO potassium diet. It was painfully difficult but I was able to get my levels back down to normal.

    According to my MRI report the radiologist stated that they could not rule out demyelination in the "multiple lesions" and that the lesion in the corpus callosum is not typical for migraines and should be monitored and re evaluated as needed.

    Unfortunately, I have military insurance through my husband and it is a nightmare to get referrals to specialists. I am typically sent to the naval medical centers where I am not sure they specialize in anything...

    I was not aware the lp couldn't dx ms, thank you for that note. I have also had an emg on my legs that came back normal. The doctors just keep throwing me around because each one says they just don't know.....

     
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    Old 12-27-2015, 05:24 PM   #4
    MSJayhawk
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    Re: odd symptoms for 9 days now ...

    Majikgirl1997,

    Many of the tests you have had ate ruling out a plethora of possible causes. The more they test, the more it pushes you towards neurological concerns.

    Were you tested for a D deficiency prior to this last test?

    While you have a chain of command to go through, you can get to see an MS Specialist. You might even bring up the request. If you are out of the current doctor's area of expertise, they may want to refer you to the specialist so that they do not have to deal with you. Being a squeaky wheel can be beneficial. Just continue to self-advocate until they send you to the specialist. At the top of this page is a link to locating a specialist in your area. I would get a list and take it to your doctor and ask for a reference or if there is a navy doctor whose specialty is MS.

    The radiologist is covering their bases with a broad brushstroke. Migraines as well as MS, childhood infections, current or recent infections, high fever, etc can all cause lesions. The radiologist is rarely one with MS experience. My MS Specialist might see the radiologists report, but she reads the MRI herself because the radiologist is not likely going to spend the time measuring the various lesions.

    We will stick with you through the process. You are not alone.
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    Old 12-27-2015, 06:15 PM   #5
    Majikgirl1997
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    Re: odd symptoms for 9 days now ...

    No, the vitamin d and b-12 deficiencies just started. I had been tested for them every 2 mos with a plethora of other blood work.

    I will definitely ask if the new neuro specializes in ms. It was odd though that the last neuro did not want to see my MRI from last year, stating it was "not necessary" though I told her that MRI was clear. It flabbergasted me that she would not want a comparison. I know there are many other things that need to be ruled out, I guess I'm just tired of not having answers and scared that it will take forever! I watched my uncle with ms and it was not pleasant for him to get his dx, it took like 10 yrs! I guess I just want to feel better.

    Thank you for all your responses!

     
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    Old 12-27-2015, 06:27 PM   #6
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    Re: odd symptoms for 9 days now ...

    Majikgirl1997,

    No worries. Unless your doctor is looking for deficiency, it may not have been included in your previous tests. Your deficiency could have been slowly progressing until it reached a tipping point.

    An MRI needs to be compared in order to see if there are new lesions. I think this probably speaks volumes as to the doctor being outside their element. Sometimes MRIs read by non-MS Specialists can easily overlook the objective data.

    BTW, a single lesion would place you outside of the Revised McDonald Criteria for MS. A proper doctor would follow you until a second lesion presented. Acquaint yourself with the Revised McDonald Criteria and hold the doctors accountable.

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    Old 12-27-2015, 07:22 PM   #7
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    Re: odd symptoms for 9 days now ...

    Hello Majikgirl1997,

    Quote:
    My spinal mri came back with disc bulges but my dr said these are likely from age, nothing to worry about.
    Age related back problems are, unfortunately, common as we get older. However, disc bulges can cause Neurological symptoms and it is best to have a Neurosurgeon take a look at your MRIs before accepting "nothing to worry about." It is possible the bulging discs are causing the pain, weakness, and spasms in your legs.

     
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    Old 12-27-2015, 09:27 PM   #8
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    Re: odd symptoms for 9 days now ...

    Snoopy I was kinda wondering about that too. And the fact I'm only 35....

    Msjhawk, I looked on the site and actually found that the neuro I have my appt with on the 13th does have a sub specialty in ms! So greatful!

    Thanks guys!

     
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    Old 12-28-2015, 05:09 AM   #9
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    Re: odd symptoms for 9 days now ...

    I am so glad to hear that you were able to get the appt with the specialist! MS specialist are a great place to start...they have seen it all and heard it all and because MS presents so differently in every patient, they are not quick to dismiss you.
    They can also help refer you to another specialist if after ruling out MS, they have an idea where you need to go!
    Your in a good place medically right now. please let us know how it turns out!

    Happy New Year.
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    Old 12-28-2015, 09:49 AM   #10
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    Re: odd symptoms for 9 months now ...

    Dear Majikgirl,

    Sometimes I like to scan through new posts and see if there are any I relate to, and I saw your thread. I am so sorry you are going through so many scary thoughts and experiences! I want to share some of my observation & experiences in the hope it encourages you that what you are going through can be sorted out and dealt with.

    Fear is an enemy. Don't give in to it. Fear in itself can keep us from seeing or discovering what we can do for ourselves, so it is really important that you ask people not to scare you with 'what if' scenarios, and also that you don't scare yourself either. Think positively about discovering solutions. People do live very productive lives with all sorts of imbalances and maladies. (People that do have MS diagnosis are really great examples). I know you are kind of going through shock, but don't let fear consume you or hold you back from activity.

    What is going on can be sorted through. Yes you might have MS, OR your condition may be from a combination of things going on that mimic each other and often are not easily diagnosed, and even then often are not mitigated by specialty medical doctors.

    So while investigating things VIA doctors please don't limit yourself to doctor opinion. I think we know ourselves best. Listen to your own body and don't fear what is going on with it. Face it. Look at it and sort it out. People live with all sorts of symptoms, stay active and do just fine.

    I have a lot of injury and imbalances from a serious accident years ago, and liver disease from a blood transfusion and migraines from who knows what. But if I stop being active I get such a huge list of debilitating symptoms and pain I cannot function till I make myself get back in motion. The only time I can afford to be inactive is when I am asleep, was in a body cast or in surgery. Even in the body cast I had to keep doing little movements and stretches or I would not have been able to move when the cast was removed) I have to make a few special accommodations to go walking or camping, but even people in wheel chairs get out there. If my experience can help you at all I want to share it.

    I believe the body must move to be healthy so unless I get physically paralyzed, I keep on keeping on. I rarely stop being active for more than a few hours. Just ceasing some normal activities for a short time can send my body into spastic recoil from which it can take a long time to recover. It isn't worth it to become inactive.

    Mineral, vitamin and thyroid glands can cause imbalances and symptoms, and these imbalances do affect how the rest of the body functions. If this is all caused by a bulging disc that can be discovered. It takes time, and I suspect you have several seemingly unrelated issues going on. But I just don't see what stops you from being active. Now that you became inactive you would likely want to start again slowly. But do start again.

    The medical field is generally very compartmentalized, even though every part of the body affects every other part. Which is why I prefer DO practitioners. Osteopathic doctors usually have a specialty but they also have taken extra education to understand how every part of the body affects every other part. You may want to find a DO physician. Most medical practitioners are rarely really up on how imbalances affect the body & mental processes, which is why many symptoms are unclear to doctors and difficult for them to diagnose.

    Don't rule any solution out until it is definitively ruled out. I believe there are always some things we can do to help minimize symptoms, even if it boils down to rest, heat or cold application and regular stretches.

    Your symptoms remind me some of my own story. Want to also encourage you to read some of posts at the top of the Thyroid Board to get an idea of how seemingly very little things out of balance affect every part of the body & life.

    So please don't think the worst, and do read up on thyroid imbalance, keep moving even if on a chair you can stretch and move, supplement any deficiencies that you already know of, at least for a period of time to get re-balanced. Deficiency symptoms rarely disappear right away, so what ever you add to your diet or activity, give it time to bring restoration & healing.

    an example -
    My son woke up one day earlier this month with many symptoms similar to ones you shared about. The symptoms first presented (in his mind) as aching from needing to exercise. He pressed forward and walked and hiked, then woke up in too much pain to move at all. Saw a Osteopathic doctor at the emergency room, who did some deep tissue manipulation and his pain drastically decreased. While waiting for the MRI appointment he saw a DO physician, was given some deep tissue massage and manipulation which relieved of most of the pain. (After the MRI it was seen that he did indeed need surgery for the disc, which he got Dec. 10th. The surgeon said the disc was so bad he was amazed that my son had been able to walk & function. However, now two weeks after surgery he is pain free, and found that none of the other things he was afraid of were wrong. But he did learn that he needs to sit without crossing his legs, and that he needs to do regular and reasonable exercise and stretching, and to eat right.)

    Sorry for going on and on. I just want to encourage you to get yourself back to moving as much you can, soak in a hot tub if you can, get massages, eat bananas for awhile for potassium in balance, and do light and gentle stretches of your legs and back and shoulders and arms. Get yourself active again as much as possible and stay active while you sort through this.

    Love,
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