Left and right side different, any ideas? Please

Discussion in 'Fibromyalgia Main Forum' started by tansy, May 23, 2003.

  1. tansy

    tansy New Member

    When full blown CFS took hold I had a lot of temporary paralysis in my left side. Arm and leg wouldn't move, no feeling etc. I was initially diagnosed as having polyneuropathy following a viral infection.

    This kept happening for some time then gradually settled down to a much more low key problem.

    Since then I've had a significant difference in the way left and right behave.

    Left is more difficult to coordinate and reacts slowly to messages from brain. Muscles are less effected though, seems to be because I've pushed them less. I have more referred pain from nerves in cervical spine and lumbar spine - disc problems.

    Right is almost hyper. Even the back of my right eye twitches. There's a lot more problems and atrophy in the muscles even though they are used more. Muscles in right spasm more. Do double actions with hands, speech can be similarly effected, when a word comes out twice in quick succession.

    Physios notice significant difference in neuropathy.
    When people talk about a semi-seizure state it feels like that but only on my right side. The left is more like the classic CFS, dulled, weary and slow.

    Reflexes on both eyes abnormal, arms dulled, knees brisk, plantars reversed. But within these the right is brisker.

    Did have some dodgy oral surgery two years before onset of full blown CFS. The surgeon complained the removal of my wisdoms, which he added to the other surgery I was having (got paid more by private health insurance), had been particularly difficult. Needless to say that I had no sympathy for him, he didn't seem to notice the mess I was in. I felt as if I had been brutally attacked around the head afterwards. It left me with problems there and then which over time have got worse. I think they are contributing to my physical disablity.

    Do have neck problems, have checked out chiari and upper cervical problems. Some bells have rung but I wanted to see what experiences others have had before trying to get this investigated.

    Went to chiropractor who treated my neck several times but said that I should never have it done again due to my reation to the manipulation. Also had a terrible long term reaction to lumber puncture. It left me with head pain that feels as though someone has sunk an axe into the centre of my skull. This was made worse when put on high dose steroids - couldn't stand being flat or upright, had to lie with head slightly raised.

    Since I may have to fund my own scans etc I would like to try and work out what I really need.

    Any feedback on this would be appreciated.


    [This Message was Edited on 05/23/2003]
    [This Message was Edited on 05/23/2003]
    [This Message was Edited on 05/23/2003]
  2. Shirl

    Shirl New Member

    I don't have CFS, but am replying so that your post will go back to the top of the board.

    I do hope someone can help you with your problem.

    Shalom, Shirl
  3. tansy

    tansy New Member

  4. Irwin

    Irwin New Member


    I had a pinched spinal cord and felt a difference in numbness between the left and right side of my body. I needed an operation to fix it, something called a posterior laminectomy.

    You may not have the resources for a scan but it's too important to let go.

    Good luck.

  5. tansy

    tansy New Member

    EMGs many many years ago showed nerve irritation problems in first lumbar then cervical area, worse on left.

    Thought MRIs might be best. I know they're expensive but I have to find the money somehow. I'm so tired of the medical politics at play in my case. In the UK the NHS is in a pretty bad way and a lot of other people are being frustrated too. There are private medical insurance companies but they won't cover prexisting conditions. What's more I cannot cover the monthly costs on top of my other DD related expences.

    Just needed to get more ideas as to what is going on so I only have to fund what is necessary. Your comments have given me food for thought.


    [This Message was Edited on 05/24/2003]
  6. layinglow

    layinglow New Member

    With your neurological symptoms if in your boat, I would do what ever necessary to investigate, and have the appropriate testing accomplished. I am in the US (without any insurance at all) so I am not familiar with the system there, but as I said do what it takes. I have learned that to be indigent is sometimes the only way one can receive appropriate medical intervention.

    I would start with an MRI, certainly, and depending on the results, if necessary, go on to fMRI (functional MRI), and SPECT and PET scans. I would never mention a CFS/FMS diagnosis, but go strictly off your neural history. You will be better off this way.

    Best wishes,
  7. tansy

    tansy New Member


    I know to get these done I probably have to go outside this area, I've tried here and got nowhere, my GP (PCP) tried "out of area referrals" but they were turned down, happening all the time now.

    Really annoyed because haematologist said he'd refer me to local neurophysiologist. Didn't. Chased him up and he denied ever suggesting it. Problem is I know why they are worried about any possible findings

    I may be able to access some scans at cost, or get my brother to suggest ways around the rules and blocks.

    I know these DDs are neurological but some of my problems are a bit different and they're progressive.

    Sure now that this and the chronic infections/hyoercoagculation at bottom of it all. The latter I will have to approach another way, I'm just imagining my GP's face when I bring it up with her. If she's unsure, or unwilling, will contact a doc I used to see privately; I'm sure by now he's heard about it all.

    Your comments have been really appreciated.


    [This Message was Edited on 05/24/2003]