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Any advice would be great

Posted , 2 users are following.

Shazza21
Shazza21

Hi

I have been unwell for 3 yrs weakness numbness in left arm and leg poor coordination and falling

Had MRI results Demyelination lesion right middle cerebellar hyper intense

They say this is clinically isolated syndrome I'm really confused as my symptoms are getting worse

Just waiting for another appointment with my consultant to discuss this with me has I received the information by letter

Feeling really confused any help would be appreciated

Thanks

0 likes, 4 replies

4 Replies

  • wendy80842
    wendy80842 Shazza21

    Posted

    hi, i'm so sorry that you got medical results via the post rather than in person, that's awful. i'd book an appointment with your GP, he/she will be able to give you some idea of what's going on. it will also update your medical records re: worsening symptoms.

    keep a record of any already existing symptoms, plus new symptoms. record dates/severity, if symptoms lessen, record that too. it's all important and really handy to take to medical appointment. take a list of what you want to discuss to any med. appointments. if possible/wanted, take someone with you to appointments, as a second person can help keep any facts you're told fresh in your mind, and it's handy to be able to talk about it later.

    good luck.

    • Shazza21
      Shazza21 wendy80842

      Posted

      Thanks Wendy

      I did visit my GP he explained that for example if you had a flex of wire and the cord was damaged it's exposed to live wire he said that's what's happened to my nerves in the affected area of my brain he said the maylem shief is damaged

      I just need some answers and treatment

      I don't know if this will be MS or lead to MS

      So confused I have symptoms of MS x

  • wendy80842
    wendy80842 Shazza21

    Posted

    unfortunately, being diagnosed (dx) with MS is a notoriously tricky process, as neurologists typically need to see progression of demyelinisation over time (unless there's a hell of a lot of lesions on first MRI) so they do another for comparison. it's normal for a lumbar puncture to be done to look for 'oligoclonic banding' in spinal fluid sample, which is almost always present when the patient has MS.

    those of us who have been dx tend to call where you are now 'limboland', it's a pain in the rear having to wait while tests are done, but IF it is MS, it's just 'the nature of the beast', sorry i can't be more use.

    • Shazza21
      Shazza21 wendy80842

      Posted

      I had lumber puncture in February 2013 didn't show obligloban did show damage to the spine

      Thanks for your advice

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