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So scared. I dont know what to do.

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  • matthew55
    replied
    There is nothing to fear except fear itself. Stay Strong. 👍🤗😘😍😁xx

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  • Mikael
    replied
    Hi Russ sorry for what your going through, i myself have had problems for 4.5 years now, i too have chronic denervation but for als you need to have both chronic and acute,which you dont have. Also since a dr who specializes in als told you no als i would take that to the bank. Your tremors are most likely from all the anxiety. Hope you come to terms with this. I live in the states too and know the stony brook clinic.
    mikael

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  • EvelynMW
    replied
    It is horrible for you; waiting another 2 to 3 months to get your next appointment, and hopefully find out more. I hope we will see a final post from you, when you tell us MND has been ruled out, and the cause is curable. My thoughts are with you

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  • Lynne K
    replied
    Oh dear, not good Russ. I hope that on the 10th August your neurologist will be able to tell you whatever is happening and give you treatments that will help. Love Lynne x

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  • Russ3465
    replied
    Hi everyone,
    Can't understand that since I noticed my atrophy in my leg april 23rd which has been aching a little more and the atrophy in my right gluteus on may 10th I have been also experiencing stiffness in my shoulders , arms, hand and legs. With a little aching in forearms and fingers since then. Its 24/7 . Dosent go away. My voice still hoarsed fo 5 weeks. I've tried to de-stress and not doing a good job of it. I've tried some muscle relaxes and zanax . Nothing really helps. The more I try Nd relax my body the more little twitches I feel, also some internal vibrating in shoulders. Just wierd feelings. Fueling my anxiety. Can it all be stress and anxiety? Can this all be happening in 5 weeks to me?
    Next appt with neuro is for Aug 10th. Which would be 3 months since my last visit and Emg test. I wake up stiff and sore and go to sleep stiff and sore. Just having a hard time with this..

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  • Ellie
    replied
    Originally posted by Russ3465 View Post
    I hope this points away from what I have been thinking ...
    Yes, it does. That is why 2 Neurologists cleared you of ALS.

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  • Russ3465
    replied
    Ellie. Thank you for the reply and some reassurance. I didn't post the summary of the EMG which stated chronic denervation of the bilateral L4 and L5 . Absent peroneal CMAPS AND EDBs are of uncertain significance. I hope this points away from what I have been thinking ...

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  • Ellie
    replied
    Russ3465 Whatever it is, your Neurologists have told you it is not ALS, based on evidence - clinical exams and diagnostics, including that EMG which is not suggestive of ALS.

    Use your energy to find the cause for whatever is going on, that means switching your focus away from ALS.

    All the best.

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  • Russ3465
    replied
    Atrophy in my leg.. my emg reports..im scared.
    You do not have permission to view this gallery.
    This gallery has 2 photos.

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  • MNDConnect
    replied
    Dear Russ3465

    There will be a reason why your leg and gluteal muscles have atrophied, but as I previously said if this was due to Motor Neurone Disease you would have noticed quite a lot of weakness by now.
    I can appreciate just how anxious you must be, you don’t understand what is happening to your body and you need some answers.
    Unfortunately, it may take some time and a lot more testing before you may know why this is happening to you.
    Because your electrical tests were quite recent the Neurologist may feel it is too soon to repeat them. As stated before, the electrical tests do not always pick up early signs, so by waiting for a while you may get a more reliable result.
    I am so sorry I cannot be more specific or give you the answers you need, all I can suggest is that you speak to your doctor about your anxiety, as this may be contributing to the other symptoms you are experiencing, and keep in touch with your Neurologist, especially if any of your symptoms deteriorate.
    You are more than welcome to contact us if you have any questions.
    With kind regards
    Jacqui
    Senior MND Connect Adviser

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  • matthew55
    replied
    It was an ENT consultant who first confirmed MND before I saw a neurologist. Guess I have always been lucky. 😀x

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  • Mary C
    replied
    Hi Russ, I am sorry you are going through this anxiety.Like the MND advisor stated it sounds like you need re referring back to neurologist.
    I also was told I had back problem at L5 and L6 which caused footdrop and got referred to a neuro surgeon.However by then my arms and hands had become affected so referred for nerve conduction tests, brain scan and on to a neurologist before getting the MND diagnosis.
    On my EMG appointment I asked which nerves were affected and she told me it was motor nerves but obviously she couldn’t make a diagnosis.I just knew then it was MND as the technician also said When I asked if it could be MS and I was told no.( not sure if she shared info freely because I kept asking questions )
    I did pay privately for EMG as I was very anxious and wanted to find out ASAP plus Covid came along and a lot of face to face consultations weren’t happening.
    Really hope you get some answers soon as I can relate to the not knowing anxiety that I had for months pre diagnosis.

    Best wishes
    Mary


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  • Russ3465
    replied
    Just spoke to my orthopedic surgeon who took all the mris of my back and said that nothing on the EMG report is being caused from my back. No stenosis or pinched nerve that my neuro thought. Now I'm really freaking out.. omg

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  • Gordan1111
    replied
    Hello. Only my opinion but I think if neurologists thought could be ambiguity then unlikely to have given positive No

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  • Lynne K
    replied
    I’m sorry about your symptoms and your stress Russ. But I’m not surprised about how you feel with all that going on.

    I saw a Neurologist about a year before my eventual diagnosis. He referred me for an MRI on my spine and discharged me. I do have degenerated discs and that was confirmed but otherwise a waste of time. My eventual diagnosis came a year or so later, after a brain MRI and a set of muscles and nerve conduction studies.

    Your advice above is great and I cannot add much to it but I agree for you to speak with one of the Neurologists that you saw about any degeneration since they saw you and ask if not MND what else could it be. A more general Neurologist may have wider experience so may be able to spot clues for some other conditions and MND/ALS.


    Sending you a big hug and my best wishes for your receiving some good news soon. Lynne x

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