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    Could this be MS?

    Hello to everyone,

    I wanted to post and maybe talk to some people who have been diagnosed with MS.

    I'm 27 years old and am currently being advised by my doctor (as soon as my insurance goes into effect) to go to the ER and have a spinal tap and an MRI done.

    I have been suffering from a rash of symptoms that she suspects are related and may lead to a diagnosis of MS. In January I sat up in bed and could not see. At all. My vision came back in a minute or two, but since then I get a fuzzed out white spot in the vision of my right eye. It too comes and goes, and is only generally there a few minutes, but sometimes multiple times in a day.

    In March I started to get a sense that my eyes were jumping back and forth if I laid on my stomach and read a book or looked down. Now, if I tuck my head to my chest, that sensation and jumpiness in my vision comes back.

    At the end of July I got bronchitis very quickly and was given Ciprofloxacin for it on Aug. 2nd. I started to have pain in my tendons all over my body. It was worst in my knee and my achilles, but was happening everywhere. I stopped the Abx Aug. 6 or 7 and went to the doctor. I was playing water polo for college, and would go home with swollen red shoulders and pain everywhere. I saw the sports medicine doctors at school, the trainers, and did everything by protocol, iced, anti-inflammatories, etc.

    I saw my doctor again on August 19th with severe joint pain all over my body. She tested for Lupus, Rheumatoid Arthritis, Rheumatic Fever, Scarlet Fever, Lyme, secondary infections, HIV, Thyroid problems… Everything has come back normal. All of my bloodwork has been clean and well within normal values.


    I have been back in to see her a few times since then, and saw her last on the 31st. Since the first visit on the 19th I have the following symptoms

    - systemic tendonitis

    - joint pain in my ankles, knees, feet, toes, hands and fingers, wrists, elbows and shoulders. It comes and goes and gets flare-ups from moving around. It can be anything from achey and sore to feeling like a red-hot poker has been stabbed into the joint.

    - a burning sensation in my joints

    - a burning cold pain on my skin, like you feel if you put an ice cube on your skin and hold it there. This starts in my hands and moves up my forearms and into my upper arms when it gets very bad. It makes me feel like I need to hold my arms in ice water. I also feel it in the tops of my feet and ankles.

    - shooting "electric" pains that go from my hand or wrist into my forearm. These are generally followed by burning and tingling of the skin on my hands and arms as well as a crushed feeling in the bones of my hands.

    - tremors and shakiness in my hands and arms. My handwriting has gotten small and cramped because if I write normally it is all squiggly now. It feels like it takes a ton of effort to do anything that involves fine motor skills and that the shakiness gets worse the harder I try to do something.

    - Muscle weakness in my arms and legs. My legs wobble going up and especially down stairs, like they don't want to support me.

    - Hearing things, like the "brrrrring brrrrring" sound of a telephone when bend my arm at the elbow. This happened to me in the bath one night. Every time I straightened my arm it would stop. Now I hear a sound like the ice cream man is blocks away when a fan is on in my room.

    - Waves of dizziness and nausea. I assume this is vertigo? I've never experienced it as a negative thing before. I have always loved the feeling when flying or on roller coasters or thrill rides.

    - I feel very tired very easily. I have not been in school since the 17th of August and have not driven since then. I was under orders to stay in bed from my doctor due to the tendon pain and dizziness. But just walking around the house, or around a Target for 20 min or so leaves me exhausted and ready to pass out.

    - Very deep pain in my legs when resting. This is something that is recurring and has been for quite a while. Starts generally around my ankle and moves up to my hips sometimes. I describe it as feeling like the long bones are bending with the weight of gravity. It's excruciating. It was a horrible bout with this pain that caused me to sit up the night that I couldn't see.

    - Loss of coordination when walking/stumbling and a slowed mental reaction time. Also a tendency to say a word and have it come out nonsense syllables instead of what I meant to say.

    My doctor put me on prednisone first, which did nothing, then on a 6 day course of 4mg solu medrol This had a small improvement by days 3 and 4, then the symptoms came back. I have been on 800 mg of motrin and vicodin around the clock since the 19th, and they both do pretty much nothing but make me feel a little numb and give me a stomach ache.

    My doctor started out thinking that this could have been an allergic reaction to the Cipro I took, but things have been getting worse instead of better, and as I talked to her more, she said she didn't think it was the Cipro, or if it was, then it could have triggered something auto-immune.

    I have always been a very active person. I play water polo, I run and do half-marathons and triathlons. I swim, surf, and love to be active.

    Since the beginning of August I have gone from a very fit and active 27 year old girl to a 27 year old girl who can't move around without crutches and braces on both wrists, both ankles and both knees.

    I am terrified. When I started talking about the burning skin and hearing things, my doctor told me that medically, her advice was to immediately go to the ER and see a neurologist and have an MRI and a spinal tap done, as well as whatever else they decide to do. She said that since we have ruled out so many other things, she has to consider things like MS or tumors or cancer. We unfortunately had to apply for medical insurance first.

    I am sorry that this is so long and detailed, but the doctors do not know what is going on with me at all yet and I was hoping that the community here could tell me if what I am experiencing sounds like it could be MS or like something else.

    I have to wait until the 15th to schedule the MRI and spinal tap so right now I am in that worst spot of waiting to find out what's making me feel so horrible and what has happened that has turned my life upside down in such a short time.

    I find that every day I feel worse overall and the stress of waiting to see is not helping.

    I would so greatly appreciate it if anyone could help or respond at all.

    Current Dx: Poss. MS pending MRI / LP
    *Living In Limboland*

    #2
    Waiting sucks.

    I'm 30 and an avid backcountry hiker and mountain-scaler. Now my limbs are filled with a weird, buzzy painful cement-- what gives?

    So I know your pain (or, well, my version of your pain).

    I, too, am waiting for an MRI and LP to confirm my neurologist's suspicion of MS or a spinal tumor (what awesome options). Why does your doctor want you to go to the ER, though? That can be so expensive. I would think better to get a referral to a neurologist (even better if the neuro is an MS specialist!), who can take a comprehensive history and perform exams. Like, my neurologist discovered issues with my reflexes and leg strength that wouldn't have been noticed without a full exam.

    I guess what I am saying is that having a neurologist on the case is a good idea.

    Other than that, I can just offer sympathy that it SUCKS not to be active. I used to bike everywhere, hike to the tops of mountains and back in a day without a single pain, always be out and about. I live in gorgeous country-- I hate not being able to love it before the winter comes! I think it is good to try to get as much normal exercise as you can, though. I go on walks around town now, as far as I can go before it is too much, and I take very gentle bike rides.

    But to reiterate-- yes, waiting is the worst. Especially while you're suffering. Feel free to complain to me. Us formerly active young women can provide mutual support for waiting and for missing our favorite activities-- and coming up with new ones, maybe? I need something to do. I am so bored, on top of it all.

    Keep me posted how you're doing!

    Comment


      #3
      Derrie,

      Thanks so much for the kind words and commiserating.

      In answer to your question, I think my doctors plan is for me to see a neuro. I didn't have insurance when I last saw her, though now I do, yay!, so I think that she thought that if I went to the ER with very neurological sx's that a competent doctor would then order the MRI and LP and then have me referred to a neurologist. We both knew it would be very expensive to do that way, but I think that she thought that it may have been the fastest way to get the testing done.

      Did that make any sense?

      Now that I have been approved for Kaiser Southern California, I guess I can actually just go in to see a neuro and not have it cost a fortune, once I get the referral. My plan goes into effect on the 15th, so only a few more days before I can get some answers! (I hope)

      I do plan on doing a walk-in today with my Primary and letting her know of some new things that have happened this past week, and also asking about a referral for which Kaiser doc she recommends, which neuro she wants me to see, etc... I also plan on BEGGING her to work with me to come up with some sort of exercise plan that she is willing to clear me for. I do hurt some when I move around, and obviously my mobility is worse lately, but I'm not an invalid yet and I'm SOOOO bored.

      I'm at the point where I want to just go swim or go do yoga or pilates or something that will at least get me sweaty and feeling those endorphins again. Plus, I'm positive that it will help with my mood.

      I'm glad to hear that you're able to still move about, though sorry to find you or anyone else in this boat. Bike rides may be an option, providing I can get my fiancee to lift mine in and out of the car. I have a rather heavy mountain bike, which I adore, since I love careening down mountain sides, but it's kind of a beast and has very very grippy tires. That all means that it's heavy to ride and takes a lot more energy than say, my sister's Specialized.

      The only part of my legs that hurts really are my knees at times and my ankles. But my knees have hurt on and off since I started running and riding years ago, and I think that the exercise for my ankles might be good.

      You've convinced me without even trying, lol. If the doc says it's ok, then I think I'll try a short ride with the fiancee this week. He'll probably balk, but I'm in charge, so it's ok.

      Hope we can both get an answer soon and get back to climbing mountains!


      Please keep me posted on how you are doing?

      Current Dx: Poss. MS pending MRI / LP
      *Living In Limboland*

      Comment


        #4
        OK, first off, I am glad you have insurance. Insurance is key. I am lucky enough to have a job right now that has an awesome insurance plan, which relieves some of the stress of having to have all these tests and doctor's visits.

        I know exactly what you mean about coming up with an exercise plan. I realize that the pain I am experiencing is nerve pain, so it's not the kind of normal, "warning" pain that means I am overexerting or injuring myself. So honestly, I could go running, but I would pay the price when I got home (if I made it back home).

        My pain is deep within my legs, sort of undefinable. It gets crankier with exercise. But I'm still making myself walk a few miles every day (to and from work and walking my dog) because I know the exercise is good for me. And for my dog. I don't think my dog will allow me to stop her long walks. She's a rather good motivator.

        Ah well.

        Let me know how you bike ride goes. I've found my best bike riding option is my trust old Nishiki-- it's a road bike, lots of gears, decently lightweight. I'm just riding on pavement: in town, on bike paths, etc.

        And also keep me posted how your doctor visit goes! My c-spine MRI just got pushed back till Thursday ("Our contrast person isn't in on Tuesdays." Well, then why did you schedule me for an MRI with contrast then?), and then another neurologist visit on the following Tuesday. Boring.

        I'd rather be hiking. But so it goes!

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