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    • #20350
      goyo borque
      Participant

      Good Morning.  I’m sending the message because I need help.  my wife was diagnosed with possible bulbar ALS.  the point is that she started 20 months ago and she only has it on her tongue and one side of her face.  The doctors only say that we should wait since as I said it is possible.  is this normal in this disease?  that for such a long time it does not advance?  also that the bulbar stem reduced … I don’t know whether to believe the doctor or not.  Thanks a lot for everything

    • #20366
      Marianne Opilla
      Participant

      Everyone has a totally different presentation of ALS, so it is hard to define symptoms and predict concrete outcomes.  Often with slow progression and few involved muscles, as with your wife, it is a wait and see situation.  I hope she continues to do well and enjoy life and stay very positive.

      Take care!

      • #20382
        Ali Reza
        Participant

        Hi, My mother had BP, in 20 month it progressed alot, it seems it is very Slow if it  is BP, but if one side of the face, test for Myastnia Graviss (sorry if my spelling is not correct).

        Wish you all the best

        • #20384
          goyo borque
          Participant

          hello.

          They have already carried out the analytical tests for MG and they were negative. ( I don’t know about other possibe test for MG)

          I am very sorry for your mother. Thank you very much for your help.

    • #20368
      goyo borque
      Participant

      Thank you very much for the reply. The truth is that I take this uncertainty a little badly, 4 doctors have reviewed it and those who are for private insurance say that it is very rare but they all say that we can only wait for it to evolve. It is rare according to them because it only affects one area and that the bulbar stem is reducing.

    • #20369
      Mark S
      Participant

      I am going to assume after 20 months, Drs have ruled out stroke, tumor, Lyme, viral syndromes….

      And the question is it non-progressive bulbar palsy or bulbar onset ALS.

      Are those  correct assumptions?

      Unfortunately ALS is known by time and exclusion.  Hang in there but don’t just wait and see until after every thing is ruled out.

      It took me over 2 years to rule it all out.

       

    • #20370
      goyo borque
      Participant

      thanks for the reply.

      According to them, they have ruled out everything through analytics and electromyography and magnetic resonance imaging.
      I also forgot to comment that it all started when she gave birth to our daughter when she was put the anesthesia and it worked upwards  instead of towards her legs.

      I don’t know if I should ask for any analytics or something special to rule out something. The truth as I mentioned we are at a point where they only say that we must wait and it produces so much helplessness to see that time passes that it does not progress and that the doctors do nothing … I am sorry for what I comment and I can only thank you for your experience help and answers. Thank you

      • #20372
        Mark S
        Participant

        Note to moderators.

        I know trying to help people over forums is problematic, sorry if inappropriate. I can’t imagine thinking ALS when it was an unfortunate complication.

        Cranial nerve palsies are a rare complication of spinal anesthesia. Most of the time they resolve by themselves or with interventions.

        However, sometimes they don’t.

        As always not medical advice, please talk to doctors. I would also see a Physiatrist and be very clear about onset of issues and ask if they have any suggestions about symptom management.

        https://pubmed.ncbi.nlm.nih.gov/28343842/

    • #20375
      Amanda
      Keymaster

      Goyo,

      As other forum members have mentioned, ALS presents differently in every pALS. (patient with ALS). Try to focus on everything that you and your wife CAN do right now and enjoy everything possible. It sounds like you have had second opinions (and more). Have any of the doctors that your wife has seen been an ALS specialist? That might be something to consider.

      I want to really encourage you to focus on what she can do and enjoy things now! I it is ALS, then it is important to enjoy the quality of life at each moment and phase. Anxiety and fear are dreadful and can make a bad situation worse. Have you considered contacting a counselor to help you with this stress? It is important to focus on your health too. If you aren’t calm, and healthy, you won’t be able to provide the best support to your wife.

      Please take care of yourself and your wife.

      Amanda

    • #20376
      Carol
      Participant

      <p style=”text-align: left;”>The problem I have with almost every post here is that we never are told anything about where the inquirer lives. What country? If U.S., what state? When I hear “my doctor ” I want to ask “how much training post-residency?”. I doctor in Mpls/St. Paul, where there are 4 physicians with the qualifications to diagnose ALS. Plus one at Mayo Clinic Rochester (where I went twice, saw 3 , none of whom were qualified to see my ALS, and didn’t).  I also have a benign brain meningioma and my oncologist following it asked me who diagnosed my ALS, a very important question to him.</p>

    • #20377
      goyo borque
      Participant

      <p style=”text-align: left;”>Hi there. I am sorry. I am Spanish and I live in Spain. the doctors we have visited are 3 neurologists specialized in neuromotor diseases and a special one in ALS.</p>

    • #20387
      David Crellin
      Participant

      <p style=”text-align: left;”>Goyo, I have some understanding of how you feel. My Mum died 5 months after diagnosis, but 5 years after first symptoms. I was diagnosed one year after I first noticed symptoms.</p>
      My first tentative diagnosis was by a neurologist specialising in stroke. Confirmed by a consultant specialising in ALS.

      But I’m now seeing a professor specialising in ALS with three other professors in her clinic and over 20 doctors and consultants under her, all specialising in neuroscience and neurology. The  difference is noticeable. I have been told that I’m now seeing one of the world’s best. We describe this in the UK as a postcode lottery (zip code in the US).

      I hope you get good support. I have friends in Spain.

       

      • #20388
        goyo borque
        Participant

        Thank you. Could you give me the name of the doctor you are commenting on for looking into the future?

    • #20389
      David Crellin
      Participant

      Hi Goyo, through a chance listening to BBC radio 4 I emailed the person who has selected me for a clinical trial. Then I discovered she studied medicine with my sister & brother in law. She is director of the Sheffield Institute of Translational Neuroscience (SITranS) Professor Dame Pamela Shaw.

    • #20393
      Joan
      Participant

      I would not wait but see an ALS expert and they are hard to find
      She needs to have everything else excluded but then should consider treatment now and not wait
      You never know howling you have to live

    • #20394
      Joan
      Participant

      I would not wait but see an ALS expert and they are hard to find
      She needs to have everything else excluded but then should consider treatment now and not wait
      You never know how long you have to live

      i had to go to another state to see the correct doctors

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