Sudden leg weakness, dizziness and other symptoms, don't know what it is

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It started when I was 14 years of age (am now 33) where I had certain symptoms such as weakness, tingling, tremor, partial numbness, muscle twitches, burning pain, pins and needles in my right hand, wrist and fingers and then the weakness and also muscle heaviness spread up that arm and then it spread to my left hand, wrist and fingers and then up that arm as well. I would also drop things when holding them. Then the same kind of symptoms spread to my legs from hip to toe with additional symptoms such as an abnormal gait and falling episodes or almost falling because of leg weakness. Then I started experiencing symptoms like my legs, one leg or one foot 'freezing' so that I couldn't move it temporarily. Then I started experiencing more widespread weakness and the symptoms, not just the weakness but also pain and muscle twitches spread up my torso and then it spread up to my throat so that I had trouble swallowing and I have a 'weak, soft-spoken voice. Then the symptoms spread into my face so that my eyelids drooped a little. Things improved partially but then returned with a vengeance when I was 29 and were much worse than when I was a teenager. I walked with an abnormal gait more severely, had a lot more falls which is over 200 falls in 2 years and the falls have continued, chronic dizziness, more weakness, my legs, particularly my right leg suddenly giving out on me. Also, the reflexes in my knees are abnormal such as poor or absent in my right knee and exaggerated in my left knee. Don't know what this could be from and was wondering if anyone may be able to help shed some light on what this may be. 

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12 Replies

  • Posted

    Hi Rebecca:

    So sorry i have not heard of this and not sure what it could be, I am so sorry you are going through this what has your Dr said?

    Elaine.

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  • Posted

    Presumably you have seen a neurologist during all this time?

    Anyone in your family with any similar symptoms?

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  • Posted

    Sounds a bit like Peripheral Neuropathy to me. You need to see  a Neurologist. He will probably carry out an Electrical test on your Neuropathic pathways to ensure electrical connectivity. Furthermore, he will probably conduct an MRI to ensure your key functions are performing in the brain.

    Treatment is rather patchy. 

    I was diagnosed in January of this year. I have been receiving Intravenous Immunoglobulin (IVig) every 2 months since March. Basically, that attempts to boost your immune system and hopefully repair damage in the synapses. 

    Good Luck

    Paul (EssexUK)

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    • Posted

      I saw some improvement after the first infusion, but little or no progress after the second and third. The Neurologist suggests I have a full years treatment before reassessing. That will mean another 3 sessions between now and next February.

      I recently had a procedure on my wrists ( both) for arthritis. They injected steroids into the wrist to ease the pain. 

      I found using walking stick for the PN was exacerbating the pain in my wrists. This has been helped by a change in the sticks suggested by the physios attached to the local Orthopaedic unit. 

      They are returning next week to assess my balance needs and suggest exercises that will help.

      Will let you know how this goes.

      Paul

       

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  • Posted

    Thanks for your comments. The one doctor I saw thought I had Mysathenia Gravis, a bunch of people thought I had Multiple Sclerosis, a couple doctors thought it could be some kind of muscular dystrophy, the one neurologist thought I may have some kind of metabolic disease that caused the neurological symptoms, the one other neurologist thought I could have myoclonic epilepsy. It appears like at least for a long time, I have been a medical mystery to the different doctors. I have had numerous tests done to try to get to the bottom of what was causing so many neurological symptoms, such as a lot of bloodwork and I mean a LOT including giving 13 tubes of blood during one of the many times of giving bloodwork, a few x-rays have been done, also different heart tests to rule out heart conditions especially because I was so dizzy all the time, ultrasounds, EMG, CT scan of the brain, 4 MRIs (two of the brain, one of the c-spine and 1 of the t-spine), MRA of the t-spine and an EEG. I also forgot to mention a few other symptoms I have such as myoclonic jerks (hence why the one neurologist thought I may have myoclonic epilepsy), episodes where my neck muscles suddenly lose all muscle strength and my head will fall to my chest, incontinence, and 'seizure episodes'. I also have relatives who have the same kind of symptoms as I do and I found that out after experiencing the symptoms so I know it runs in the family to some degree. Like my one relative had some of the same symptoms as me such as unexplained dizziness, falling episodes, trouble swallowing, muscle weakness, aches and pains, incontinence and later on myoclonic jerks. And other relatives have more or less experienced at least some of the same symptoms as me. The conclusion the doctors came to after all the tests was a certain brain and nerve disorder that causes a 'malfunction' in the nervous system similar to MS and other neurological diseases. I'm not 100% sure that it is what I have because of some positive signs like with my reflexes being abnormal which this disorder doesn't apparently cause, a history in my family having the same kind of symptoms and I just don't know if this particular disorder has a genetic link or not, and the treatment for this particular disorder should have helped and it either didn't help at all or made me worse. So I really feel like a medical mystery. Even if the disorder they think it is, is the right diagnosis for all my symptoms, it is still something that even the best doctors who are leading doctors in the world for this particular disorder don't have a lot of understanding about especially compared to other things that they have a lot more understanding about. 
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  • Posted

    I have pretty much all the same symptoms they've told me it's classed as FND functional neurological disorder if they can't find anything in my mri scan
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    • Posted

      I was finally told it was that disorder too. But I still don't believe it is just FND and not something else as well. At least because of my reflexes being too poor or absent in one leg and too hyper in the other leg as I am quite sure FND doesn't affect the reflexes. 
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