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  • lostontherock

    So Nov 2013 I had an episode of horrible joint pain, difficult to move, lasted about two weeks.  December I started noticing tingling while laying down in my legs.  I've had horrible fatigue, mental fog (calling things by the wrong name, poor memory and I have always been known for my memory), hair loss arouind hairline with regrowth, double vision on a neuro exam done by PCM, referred to MS specialist in January, MRI of brain and spine was normal.  Referred to rheumatologist because ANA was elevated, of course when I saw him it was normal.  ANA has since been elevated and fluctuates, but is always elevated.  Have what I call flare ups with increased fatigue and what feels like my bones hurting, paricularly my leg bones.  Approx two months ago I got a second opinion for rheumatolgy and he happened to pull CPK and my levels were extremely high and I ended up getting hospitalized for rhabdomyolysis, even though there were no changes to my exercise routine. My levels were close to 9000!  So back to rheumatologist when I got out of my 2 day stay in the hospital, he doesn't have a clue and suggested fibromyalgia, which just irritated me.  This past week I went to do some push up and I got electrical zaps in my hands.  I though I tweaked something, so I shook my hands and tried again only to have my hand give out.  This last part has me thinking this is more like MS,.  The tingling that started in Dec is present on a daily basis now, if I sit too long or stand too long,  I get tingling and numbness.  If I am on the phone, my fingers tingle and go numb.  I'm tired of feeling like I'm twice my age.  My PCM literally doesn't know what to do with me, doesn't know who to send me to.  I am wondering if I need to push for a spinal??? He thinks I maybe need to see a neuromuscular specialist...any help is appreciated!!  I feel so lost and I have two small children and I want to be healthy for them!  Please help, TIA

  • MS_Navigator_Carla

    lostontherock - I'm sorry you've been going through this!  I think it may be a good idea to see a neuromuscular specialist as your doctor recommends or a neurologist, if you are concerned about MS.  It's been some time, so maybe it would be helpful to visit a neurologist again.  I hope you get some answers soon and can focus on a treatment plan to help you to feel better. 

  • ElizabethAnn

    Good Morning Lostintherock,

    I am writing to share with you that I also have had a brain mri, been a few years now, and nothing showed up at the time. I have heard that it can take a while, espesially if this was early on in your case history. However, I did not have a spine MRI. They also did not use any contrast in my MRI and I am now wondering if that could make a difference on the results they see. You? Di d you have any contrast prior the MRI to help everything stand out? 

    So, I know how frustrated and possibly in a little fear you may be in. I am confused and a bit frustrated. Confused because what else can mine be at this point? I have had all the test to rule everything and his brother out of the picture. I have numerous over numerous of the symptoms. Pain and Fatigue and of course Cognitive issues HAVE to be my main scares and daily living handicaps. I have a wonderful PM Doc who does his best to keep that under control. My Cognitive impairments only seem to get worse over time and this is the most dissapointing symptom to me since I have children at home. I have trouble remembering anything short term. I have to keep a daily log to refer to. It saddens me. I feel awful when my family will be discussing an event or occassion and I am clueless, as if I did not participate at all. They say "come on mom", you have to remember this? 

    OF course they are teens, they would never understand all the way. If I do not understand, may I even dare ask how they could begin? I get it now. This is my life. I am coming to terms with that, however, I would very much like to have a name to whats going on, although I do feel I know very well what may be wrong with me at this point. But without a diagnoses, there is no treatment to stop the progression, right? 

    I am sorry to bombard you with all this stuff. I feel as if you may relate only in too many ways, unfortunately for both of us since we are still seeking understanding from others and of course from ourselves as well. We are only human. We trust these Doctors that keep us in Limbo. I tell you what, I am reaching out in hopes to learn from others. Maybe you have some advice for me or maybe direction. I don't know which way the compass wants me to go next. I am tired of just heading off blindly, paying my money, the little that I do get from SSDI, to many Doctors in the past to only tell me they can only treat the symptoms at this point. So, needlessly to say, I take a script for about every symptom I may have, give or take a few of course due to the ones not discussed since I have given up searching. 

    It would be nice to talk to someone who may have something to share. Your in my area so you experience the hardship of finding a good Neuro and maybe having to travel to see one, right? I experience that. I just do not know who to trust with this. This is important. 

    Thanks for reading. I know I am ranting. Please, rant back. I would love to hear your story and your complaints. This does not come without both and so much more. 

    Your Friend,


  • lz123


    I'm new here too and feel I can relate. I also have two kids (5 & 7) who I want to be healthy for and you saying that really hit home. I had my first attack three years ago (Oct 2011). I was running on the treadmill when my neck got really stiff and then I started having foot drop. The foot drop lasted a few weeks. I also experienced other random symptoms over the next few months including; optic neuritis, an electrical sensation between my shoulder blades, night sweats, nigth chills, fatigue, leg weakness and incontinence. I went to a neurologist and on my first visit she told me I had MS (I had an MRI before I saw her). I should mention that I had received the flu shot 12 days before my symptoms began. The hard part about these symptoms is that it could be any thing. Three years later, I am no closer to knowing what happened and what is going on with me. Many of the symptoms cleared up but constant numbness in my right foot, and weakness in my legs which eventually leads to difficulty walking if I'm on my feet too long has persisted. It makes Halloween particularly difficult!

    I have not had a spinal tap as I am deathly afraid of having one done. But everything I've read seems to say that the test result from that can be very useful in determing if you have MS. If you have the nerve, I recommend finding a neurologist and having it done. At least it might help determine if MS is a possibility.

    Best of luck!

  • meme59

    lostontherock.  Hopefully by now you have been refered to a neurologist and had your spinal tap to get your diagnosis.  Be patient, an MS diagnosis is not easy to get to.  It took 8 months, 3 specialists, a surgeon, gall bladder removal, colonoscopy, EGD, countless test and procedures from a gastroenterologists, losing 40 lbs in less than 2 months, suffering through cloudy vision, vertigo, bells palsy (2 episodes), physical therapy, 2 MRI's of my brain and the dreaded spinal tap to get my diagnosis of MS. Every week for those 8 months I had an appointment with a doctor or had some  kind of test or procedure performed.  I did not eat a bite of food for 2 months and had to live off of Ensure and lost from 152 lbs. down to 116 lbs.  I was so weak, I had to be wheeled around in a wheelchair. I literally thought I was going to die. But once diagnosed and starting my treatments, life for the last 5 years hasn't been so bad. I have days of fatigue, cloudy vision and a few tingles in my hands and legs now and then, but other than that, I'm coping pretty well.

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