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I am having problems with hands and feet and legs!!

Posted , 8 users are following.

angie29533
angie29533

Its been over a few months now since october 2014. I am progressively getting worse. I started off feeling really off balance and not well. Then the next month my hands and feet were going numb and cramping. Then i was forgetting stuff. I couldnt remember things. I saw a neurologist, he did a alot of test and the only thing that came up was a cyst on brain which was small and not a threat. Ive had an echo test on neck, mri, nerve conduction, the head test emg i think . He is sending me to a neuro muscular dr. I see him this month. Last month my mouth and tongue started going numb. My left hand ecspecially looks like it plays the piano with muscle spasms. Right hand yes just not as much. My spine and neck are really starting to hurt . I had muscle twitching in left leg really bad before i started dragging it. Theres too much to list. Kind of scared. Anyone else feeling this?

1 like, 13 replies

13 Replies

  • buddha
    buddha angie29533

    Posted

    Hello! Do they suspect MS or TM? Did they do an MRI on cervical, mid back or lumbar areas?
    • angie29533
      angie29533 buddha

      Posted

      My neurologist hasnt done a spinal tap or spine mri or lower. He says nothing. Doesnt know. I ask over and over what it might be. I started my ssi paperwork cause he took me off work for so long and i dont have anything, so they said dont switch neurologist until u see your muscular dystrophy dr.
  • Heather2612
    Heather2612 angie29533

    Posted

    Hi Angie. Your symptoms are exactly how mine started. I have been diagnosed with neurological b12 deficiency. Ask for vitamin b12, folate and ferritin. Look up neurological b12 deficiency symptoms.
    • angie29533
      angie29533 Heather2612

      Posted

      Yes thats what they were thinking. I had to do this blood work monthly so they could check levels of everything. Nothing.
  • SteV3
    SteV3 angie29533

    Posted

    Hi Angie,

    First thing first and what you should always avoid, yet many people still do it, never believe everything you read on the internet - if we all did that, we would all be diagnosing ourselves with the wrong prognosis.

    What you have said seems to stem to a nerve disorder of some kind, but knowing which one is another matter. You should first ask your Doctor to refer you to see a Consultant Neurologist (I know you said you have seen one, but you can always get a second opinion), they will ask you some obvious questions and also ask you to attend to have a number of scans to be done. With Neurological disorders these can be a full body MRI, or CT Scan, on top of these a Neurologist will also do some tests on you. I noticed buddha said about a Lumbar Puncture, this may also be done - basically they take a specimen from your spinal fluid. An EMG measures electrical impulses from the brain to specific points in the body. Has anyone mentioned Functional Episodes to you? There are over 28 variations and not all will be picked up by Neurologists. In the UK a Dr. Jon Stone (Consultant Neurologist) is the main guy that specialises in this area, he runs his own website giving information on the subject. You can find his website on Google by searching "Jon Stone Functional Disorders".

    I had muscle twitching in my right leg, then I started dragging it and not lifting it correctly, after this I could still walk but with a severe gait. The symptoms became worse, and still diagnosis was found, it took nearly 2 years and numerous visits to the Queens Hospital in London, before a Professor in Neuroology and his team from the USA eventually diagnosed me with a Dystonic condition called Focal Segmental Dystonia, sometimes more commonly known as Torsion Dystonia. Over the years this progressed to Generalized Dystonia (meaning affecting the whole body) until last year when Cervical Dystonia was also added. For my condition there is a deep stem brain operation you can have done, but the chances of success were only 5% - to me this did not seem worth it, because I could become worse than better. So, I took the controlled option - which has led to my current life now, in a wheelchair after 30 years, over 30+ tablets a day and 6 BoTox Injections in Hospital every 10 weeks (These are very painful, it feels like bee stings), with these and being on Tramadol I normally fall asleep on the day of these injections.

    Regards,

    Les.

    • angie29533
      angie29533 SteV3

      Posted

      Very interesting. This is helpful. What is the cervical dystonia part? Not to sound gross, i am only 38 i will be 39 may and since this started my periods are not normal. Also i am already aware of internet, very interesting but man overload!! I just want to hear from people like me. I am so lucky the muscular dystrophy dr has choosen to see me so soon. They told me it would be months and then all of a sudden i got a call a month later. I will mention everything believe me. Not passing anything up. It is getting worse. I am worse at night, cant sleep. Up every two hours. Sleeping more in morning and afternoon. What is tm?
    • SteV3
      SteV3 angie29533

      Posted

      Hi Angie,

      I know Cervical Dystonia, makes you think it would be something to do with the pelvis area, the fact is it is no where near. "Not to sound gross", Angie many people on these forums have had things done to them, if they did have any dignity - they probably haven't once in their 50's! Believe me, nothing can embarress me, I have had Testicular Cancer next month and I'm out of remission! Thank gawd!  I've had two major operations on my intestines which meant I had to have just over 50 cm of the intestines removed, that was on a Tuesday, 2 days later I was rushed back down to surgery to have more removed, on both occassions, it was something that left untreated I would have died. So, basically 3 times I've been near deaths door and survived.

      Anyway, you asked about Cervical Dystonia - Cervical dystonia, also called spasmodic torticollis or torticollis, is the most common of the focal dystonias. In cervical dystonia, the muscles in the neck that control the position of the head are affected, causing the head to turn to one side or be pulled forward or backward. Sometimes the shoulder is pulled up.  Cervical dystonia can occur at any age, although most individuals first experience symptoms in middle age.

      There is so many disorders that sound like you could have them, but when you find out what exactly what they are, you think - Ummm... perhaps not!!!

      There is another called Focal Segmental Dystonia, it sounds like something to do with the eyes, or maybe mental issues - both are wrong! It also can be classed as Torsion Dystonia, again thats the same thing!

      Regards,

      Les..

    • angie29533
      angie29533 SteV3

      Posted

      I did have diverticulitus last year may. They removed. Upper and lower intestines. Long recovery with the drain plug and stuff. The only other thing i recall is bells palsy when i was 21 for 3 years. Migraines for about 8 years but neurologist found a cyst on the brain and said not a threat d o gave me topomax for migraines and its been working. No migraines just little headaches. I go to muscular dystrophy dr march 11. I cant wait. I will mention everything u told me to him. Thanks again.
    • SteV3
      SteV3 angie29533

      Posted

      Angie, there's a strange coincidence with me and yourself.

      I had just over 50 cm of my intestine removed because it turned gangrene inside me, two days later I was rushed down for more surgery because I was unable to keep anything down, not even medication. It turned out part of my intestine had turned gangrene again, this time however they found another gland which had been touching my intestine previously, needed to be partially removed. I forgot about that, sorry about that - the meds a day don't help thinking lately.

      Hope all goes well for you.

      Regards,

      Les.

  • steve96103
    steve96103 angie29533

    Posted

    I have had torticollis / dystonia over 10 years. 2 years ago make toes sugar pointing upwards finally they stopped.... the problem I'm having now is my foot started to fold in half and I've lost strength in my foot. The torticollis effects mostly my left side to where I cannot breathe..... My doctor does not believe me so I do not know what to do or say except for go to a foot doctor. Maybe get Dr that specializes in torticollis. My left leg is numb also and as I read about this the muscles seem to go to another part of a foot. I need help very badly but it sounds like we can compare notes on our feet and what is happening. This is the first time I've reached out to anybody online. I'll tell you about other problems I've had if you haven't had this very long I may be able to help. I hope. Steve Price
    • SteV3
      SteV3 steve96103

      Posted

      Hi Steve,

      Torticollis Dystonia is very painful, I have it all on my left side as well - it started nearly 30 years ago. I get muscle spasms and cramp in my calf muscle on my left leg.

      I only replied when you mentioned your foot turning inwards, this is very common with many Dystonia's - Mine is the same, and I drag my foot which looks like I have a "bad gait", meaning it has turned inwards and I seem to roll on it, this causes problems with my ankle and leg.

      My Consultantt Neurologist suggested I try make an appointment with a Neurophysiotherapist in the hospital, so I did. The pain I was put through was bad, appointments were 30-45 minutes long, they tried to stretch the muscles back on themselves that cause my left foot to pull inwards, so basically they are fighting against the Torticollis Dystonia, it worked to a degree - but after 2 months, of muscle stretching I stopped going, because the Neurophysiotherapist caused a massive cramp in my calf muscle in the one session so I was unable to complete the task.

      Have you asked your Neurologist Consultant about Madopar tablets or BoTox Injections? A standard doctor will not always know about all Dystonias, because they are trained to a general level covering many aspects of illness or problems, this is why you should have a Neurologist Consultant - remember this, there is no such thing as two Neurologists knowing the same levels, and this is why so many people become misdiagnosed. If you think the Neurologist you see does not give you the correct information you can always ask to see another Neurologist for a second opinion. It is always better to be safe than sorry, and Dystonia is a progressive disorder - mine started in my early 20's and now I'm 53 in a couple of weeks.

      All the best,

      Les.

  • steve96103
    steve96103 angie29533

    Posted

    I was wondering if you were also having swelling and the bottom of your feet feel like it's on fire? Thank you Steve

  • crhode2
    crhode2 angie29533

    Posted

    I know it has been a really long time, but if you are still around, could you please let me know if you ever got a diagnosis? I have been having these same symptoms for 7 years and still not answers.
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