New to Forum, experiencing muscle weakness, numbness, and burning! Help!

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Hi all, 

I have been reading a few of the post on here and wanted to share my story as well.  First, I commend all of you for pushing through your illnesses and trying to discover a new "normal". I am only 26 and have the rest of my life ahead of me so some feedback and support would be awesome.  I def. have no friends my age that are dealing with this hardship.   

My neurological symptoms started almost a year ago, and at first I only experienced burning feet at night that was more of an annoyance than anything.  I was losing sleep a couple times a month, but my work schedule allows much flexibilty so my way of life was not gravly impacted. However, the past two months have been a nightmare.  On Jan. 25 I started again experiening the burning feet but it did not go away, lingering all day and night for three days.  On the third day of this "flare up" I laid down in the bed due to the impedding fatigue and a painful spasms or lightening shock ran through my rt arm and my arms have not been the same since.  They immediately felt odd and numb.  Since they have become weak and my hands very clumbsy.  I am dropping things and legs feel like jello at times.  Symptoms vary from day to day but for the past eight weeks I have experienced a combo of lightheadedness, heavy limbs, legs have become weak with exertion, strong heartbeat, muscle fatigue,muscle twitches all over (randomly), some neck and facial muscle fatigue (expecially after talking a lot).  Within the past couple weeks my hands have started to burn as well. I have been to my primary doctor 6 times.  Tested for many things and ruled out alot.. Had a brian MRI that was clear, so no MS.  B12 okay (450), high alpha gobulins, cortisol spike (looking more into this in 24 hour urine analysis), low Mch in total blood count.  Other than that all is normal, no lyme (so I think, but I know this is controversial), no rhum art, lupus.  I was put on Lyrica, low dose and slowly increased.  Didn't see much of improvement for a while.  Upped the dose, it helped the burning feet but I felt immense brain fog.  I couldn't focus and was not myself.  Lowered the dose as of now because I do not want to become immune and dependent on the med until I KNOW what is wrong!  I am not one to be highly medicated or cover up symptoms without knowing the cause.  I am being referred to a neurologist, but who knows when that appointment will come through. Hoping to get a call sometime this week.  Any ideas, suggestions, thoughts, words of encouragement would be great appreciated smile 

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  • Posted

    Low mch could be low ferritin. Have you been taking any vitamin supplements containing b vitamins as they can cause falsely high b12 test results.
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    • Posted

      Hi Heather, 

      Thanks for the quick response and the useful information!  I can or can't say I was taking my vits. consistantly around the time my testing was done.  If so it was likely my hair and nail vits which contain biotin, vit C, D3, and also I take fish oil.  I am now on b12 injections and B1 because my B1 level was on the low end of normal.  I am aware that low B1 causes several neuro symptoms.  I have been taking both the b12 and b1 for almost two months now.  

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    • Posted

      B12 injections cause falsely high test results. Find out your folate and ferritin levels. The symptoms you list can all be b12 deficiency. I get 4 weekly b12 injections and I still suffer all the symptoms you list. Neuro symptoms require aggressive b12 treatment (alternate days until no further impriveme). Then every 8 weeks in the uk. I get more often because if my symptoms. Your folate needs to be in high end if normal range for your injections to work at optimum level.

      The b12 uses folate to become active and metabolise into the body's cells. Once b12 has metabolised the body will use ferritin (iron stores) to produce new blood cells. Your mch is low which points toward low ferritin.

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    • Posted

      I was not on the B12 injection when the test was taken, so that would not be the issue.  I just looked up my labs and my folate is very high 21.0 ng/mL.  
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  • Posted

    I made a mistake in my discussion.  I have HIGH mch.  Sorry for the confusion, BRAIN FOG kicked in AGAINrolleyes
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    • Posted

      High mch means your blood cells are enlarged due to b12 or folate deficiency at cellular level.
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  • Posted

    i get all these symptoms but ive been diagnosed with nmo similar to MS its good that you are MS clear hopefully neurologist will get to bottom of it for you
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  • Posted

    sounds like fibromyalgia to me hun .
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    • Posted

      I am so early in this process of elimination.  At this point in time I refuse to believe it is fibromyalgia.  Fibro has symptoms in common with about 500 other conditions.  I was told by my GP that he would not diagnose me with fibro unless every other condtion had been ruled out. I have a strong family history of debilitating neurological disease so these possiblities must be explored.  Not at all saying I do not believe in fibro, but it is not appropriate to assume fibro this early.  
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  • Posted

    Hi EmilySH,

    Wish I could assist in your diagnosis, but alas I cannot. Nevertheless, you asked for some encouragement. Unfortunately, I have had more than my fair share of issues that could not be diagnosed straight away over the years, but eventually, for the most part, the medical profession has eventually got to the root of the problem. However, I have repeatedly had to seek second opinions, because the NHS doctors and specialists have regularly failed to miss basics. My wife recently had to explain to a GP what was wrong with her using all the information she had researched herself. Finally, because of her research, the GP agreed to refer her to the specialists she should have referred my wife to in the first place. So my suggestion is to push the medical establishment hard. Ask lots of questions. Give them ideas of alternatives that they may not have considered. 80% of the time they just pidgeon hole our symptoms without really doing any investigation of alternative causes. The GPs in particular don't really like this approach from their patients. But in my view, speeding up the process is essential to avoid unnecessary delays.

    I feel very sorry for you. Hope you get to the bottom of it soon.

    Regards

     

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    • Posted

      Thank you so much for the words of encouragement.  I am a very determined individual and will take all this advice and apply it to my situation! 
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  • Posted

    Hi Emily.  

    Have you come across the book Deliciously Emma?  It's full of recipes of alternative meals but it begins with the story of Emma's illness and why she put herself on an alternative diet after lots of research. Reading your message this morning it reminded me of her story.  There's also a website.  James

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    • Posted

      First time seeing this.  Very informative and makes me want to more more healthy choices to aid in my health!  Thank you for sharing.  
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    • Posted

      with your history of family neuro issues DO NOT LEAVE THESE SYMPTOMS unlooked-at...you MUST insist that the GP gets you fully examined and explored and tested and whetever else is needed. It may be that you do have "just" (oooh dear I have it too so know its a dangerous thing to say just!!) fybromyalgia or it might be much kless nasty than fibro.............but it COULD be something far more serious. My own beautiful daughter had similar symptoms and is now terminally ill. DON't leave it, push all you can for treatment/diagnosis/tests/ anything that will help you. And of course balance all that with diet/vitamins as you choose and believe, they will at least help you feel in control ands even help you to feel MUCH better. Good Luck xxxx
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    • Posted

      Thank you so much for the encouragement!  I can tend to be on the passive side, so I am learning how to become more aggressive with my GP.  He knows he has exhausted his resources and tests so the neuro is my next step.  Hope to meet him soon and that he is helpful.  I am learning no to put my health in the hands of doctors, and take control myself.  I may be out of control of my symptoms and flare ups, but I can be in control of my response to the illness and the food and nutrients I put in my body.  I have a strong faith that helps me get through hard days.  I am so sorry to hear about your beautiful daughter.  You and her are in my thoughts and prayers.  I try to look at the positive in life and I know that so many more people have it way worse than I.  I take this as "a journey that is in God's plan, not my own.  Thank you and I pray for your daughter.     
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    • Posted

      go easy on the aggressive attitude, Emily......don't go too mad!!!!! Gentle persuasion might work better!!!

      Thanks for your comments on my daughter...she's mum to a fabulous young man and a great wife too, but she is still my baby and it HURTS so much.

      Try as I used to I cannot see a God in her dreadful illness  ....what did she ever do to deserve a life sentence?..................... nothing.

      .x

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    • Posted

      Emily, are you still around? How are you?. My symptoms are the same, I have severe mitochondrial cell breakdown. I am very weak and am praying for recovery.
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