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  • lisa-ryan

    Member
    October 3, 2021 at 12:21 pm in reply to: Is this more progression?

    Thanks Len for your intuitive insight… yes I feel guilt when I have to ask for help because I still think I should do things on my own if I can… which is possible but at great cost and long lasting suffering.  This is difficult to navigate CK and especially without diagnosis…

    thanks Trevor for the information.  I do feel the harder I go at things, I will notice more loss…I’ll try to take the advice you have been given because  it’s probably affecting me negatively.  Finding it very hard to balance all of this.  And I’m not even diagnosed.

    thanks all for your input !❤️?

  • lisa-ryan

    Member
    October 3, 2021 at 12:20 pm in reply to: Understanding PFT

    Hi Mark, terrible time you have had, makes me frustrated for you.   It’s awful when u fee like you’re alone and not getting anywhere.  I’ll try and reach out to my Neuro muscular dr next week but with this Covid stuff, I don’t even know if I can get in to get another Emg done.. it’s the only method he uses for a diagnosis.  Shame they can’t do a good clinical.  Thanks for the support!

  • lisa-ryan

    Member
    October 2, 2021 at 11:44 pm in reply to: Understanding PFT

    Hi Amanda, no it isn’t an als clinic specialist. The last appointment I had was in early April and he basically just wrote me off I just reiterated what the previous doctor said the previous September was in and out in about 30 minutes start to finish he didn’t take anything seriously and I lost respect for him very early in the appointment he said he has 100 ALS patients so he just made it sound like I’m nowhere near the ones he deals with.

    ilana, thank you for asking, the last time I was at an als specialist was in 2019. He did find some abnormal readings that said that there’s no evidence of widespread denervation so that was the end of that and again, not very good clinical exam at all

  • lisa-ryan

    Member
    October 2, 2021 at 11:23 pm in reply to: Is this more progression?

    Thanks David for the well wishes.. sorry you received this awful diagnosis.. funny I also came from the no pain no gain mentality, pushed to extreme levels.

    I too have fasciculations all over.  Sometimes it feels like they are in my throat.  Mostly cramps are in my kegs but only really bad at times.   I wish you the best!

  • lisa-ryan

    Member
    September 27, 2021 at 11:03 pm in reply to: Is this more progression?

    Hi all, my muscles continue to shrink, my right thigh is very thin my wrists are very tiny and bony, my forearm muscles are so concave they have such an odd shape it just goes in and out in and out up to my elbow. I noticed when I use my muscles too much I have muscle pain for days and days sometimes a week and then I find it hard to recover the energy back into them I had an MRI on my cervical and thoracic spine a week ago I will get the results next week and I’m going to contact my Nuro once I get the results of this and tell him about my weak diaphragm and whatever comes from the MRI.  I am wondering if the MRI shows that my muscles are atrophying, would this be another clue for my clueless Neurologist?  I am so fed up with this I have just been ignoring the progression but the breathing when lying do we n is getting more bothersome..

  • lisa-ryan

    Member
    September 27, 2021 at 10:57 pm in reply to: Understanding PFT

    Hi Kathy,  that just a mix up in the reports, the doctors said that they did not get an actual report just a note with numbers so by the time they’ve requested it and it comes back, it’s very long.. I saw my family physician 2 weeks ago and he said it shows weak diaphragm And then he said he doesn’t know what to do with this because it was ordered by another doctor and I said they were trying to send me to a lung specialist but then that specialist said my test results were normal so I called the doctor back that ordered the test and her administrative staff said that there is no follow up and that I don’t need to talk to her again so I’ve done nothing about this but I am having pressure in my upper chest and I would almost say throat when I lay down and I’m flat so I have to raise my bed so frustrated

  • lisa-ryan

    Member
    August 11, 2021 at 10:27 pm in reply to: Is this more progression?

    Thank you, I’ll look into that or just supplement anyways!

  • lisa-ryan

    Member
    July 29, 2021 at 11:58 am in reply to: When getting a second opinion comes with risk

    Seems like it’s just another article that doesn’t hold any weight so there’s not much hope they will change much.

  • lisa-ryan

    Member
    July 29, 2021 at 10:23 am in reply to: Is this more progression?

    <p style=”text-align: left;”>Sorry for the typos, I couldn’t figure out how to edit it.. I was trying to say that the second opinion was not a second opinion that he just went by what his former colleagues have said , so I don’t know if my regular Neuro would see me in September..</p>

  • lisa-ryan

    Member
    July 22, 2021 at 8:44 pm in reply to: When getting a second opinion comes with risk

    I have read the new Gold Coast recommendations for diagnosing AlS.. I can definitely say I have LMN dysfunction 100%. This is confirmed in my paperwork from my neurologist.   I also believe that I do have UMN signs but that I never receive a thorough clinical  exam.  Many things are left out of mine.  So in u ferry’s ding that they have made changes to the criteria, how are we going to get our old school doctors to implement this new criteria?

  • lisa-ryan

    Member
    July 8, 2021 at 3:37 pm in reply to: Confused about progression of symptoms

    More confusing symptoms continue.  I had an internist looking into my chronic cough.  This led to a lot of Pulmonary Function Testing.  She finally said she can find no mechanical reason for my cough and finally tested the strength of my breathing muscles.  I just recently got the numbers only (no report yet) from my GP and it showed:  Maximum Inspiratory Pressure MIP of 48% of predicted 120%.  The Max. Expiratory Pressure MEP was 71% of predicted 146%.  From what he could tell me which wasn’t much because he said he does not understand it to that level is that my breathing muscles are weak.  The internist told me in January that if she could find no reason to explain my shortness of breath on exertion and constant cough without being able to clear my throat all the time she would send a letter to my neurologist.  That has not happened yet.  I am still seeing progressive atrophy of my shoulders, chest, elbow, forearms/wrist etc.

    I had a real shoddy second opinion at a different neuromuscular centre in which the doctor only praised my previous doctors.  He spoke to me for under 10 minutes, did some clinical in under 10 minutes, all while I was sitting yet reporting that I had walked on toes and heels etc. …you get the idea.  My emg was less than 10 minutes and he checked only 6 muscles…asked me which ones were bothering me and what side I wanted him to test.  He did say that I could have a second muscle biopsy this time on my bicep but that I would need a surgeon to do  it.  That was two months ago, no further word from any doctor.  Meanwhile when I am laying flat in bed I do find it harder to breath.  Having some weird issues waking up feeling like my throat is closed up. 🙁

     

  • lisa-ryan

    Member
    July 8, 2021 at 12:48 pm in reply to: When getting a second opinion comes with risk

    Hi everyone, I have been away from the forum for a bit, serious family health issues, I am crushed 🙁  I just wanted to weigh in on the undiagnosed looking for opinions.  Agree that fear is the motivator and also unbelievable Frustration with the medical system, seems in all countries.  I agree that no neurologist wants to diagnose until there is clear and obvious evidence of ALS.  I believe they hint to it and contradict themselves if you record your appointments.  I have done this.  Regarding a doctor second opinion as opposed to a social media second opinion, those can be utterly frustrating and useless!  They are a close knit group of neuros who will not contradict each other.  There is a pecking order that I can clearly see.  It has happened to me.  I started with a very good ALS doctor who diagnosed cramp fasciculation syndrome, then stepped down to a colleague of his who is not an ALS doctor but a neuro muscular dr.  He has kept referring back to the original ALS doctor, then I stepped down further to a colleague of his who is his junior.  His “second” opinion was to defer back to the “excellent doctors” I have previously seen who have not diagnosed Als at that time even though it goes back to 2017.  This will give rise to people seeking answers or clues anywhere they can find them.  I too am guilty of this out of desperation to know what is wrong with me although I already believe what my gut and all my research tells me.  Als.

  • lisa-ryan

    Member
    May 5, 2021 at 11:13 pm in reply to: The Waiting is the Hardest Part

    I am so sorry to hear this Amanda.  No doubt you are in shock and are struggling to deal with this..  everything you have said is my experience also.  Especially when you mention taking the first few steps after getting up from sitting. That is very hard for me as well but when I get going I am OK it’s just getting my body going because of the stiffness and pain. I am still waiting for answers as well. I also have progressive atrophy and pain.  I’m glad you could go to such a good major centre and find a good doctor. I still am waiting around for a referral to another in neuromuscular centre I am so frustrated but in my gut I know this is not good. I hope fine thanks and hopefully they do find some cure for that mutation.  I believe I also have a slow progression with symptoms from 2017 until now with abnormalities on my EMG for the last four years I feel your pain and frustration.

  • lisa-ryan

    Member
    April 7, 2021 at 10:49 am in reply to: New Referral Coming!!

    That’s very touching and smart words! Thank you!

  • lisa-ryan

    Member
    March 29, 2021 at 10:24 am in reply to: Confused about progression of symptoms

    Hi everyone,  I can’t believe I posted this thread 3 months ago and I am still confused about the progression of my atrophy.  I find I am back to square one again, researching things I have already looked at 25 times.  It is so noticeable to me how many more tiny veins I can see on the top of my hand and how more hollowed out my left palm is, my wrists are ridiculously thin and my forearms look carved out, very hollowed areas.  My shoulder bones are more noticeable and look like I am hunched forward, my pectoralis muscles are gone, my bicep on the sides of my arms are indented, ankles thinner.  The back of my calves are flat with a small bump of muscle at the lower end of my calf.  My right thigh is noticeable much smaller than the left.

    This is all progressing, time is going by but I am still able to do things.  I feel weakness and pain in my fingers hands and wrists when I push to do too much, an ache sets in after.

    I really feel like I am either out of touch with reality and I am exaggerating somehow what I am seeing or….or I don’t know what.  Literally everything has been ruled out.

    I will be speaking to a genetic counsellor on Tuesday.  My neuromuscular Dr. set this up because a gene came up for Limb Girdle Muscular Dystrophy but I only have one gene so I am only a carrier.

    I am really struggling mentally getting more and more depressed, doubting my own eyes and what I see.  I just cannot understand how this can be happening to me and I do not have a diagnosis.  I am at a loss for any hope of any answer.  I don’t know how to keep dealing with the atrophy and weakness without any hope of a diagnosis.  This is pure hell …I feel hopeless and lost.  It’s impossible to live like this in constant thought and worry.

    Thanks for reading.  I needed to get this out.  I am so down right now.

  • lisa-ryan

    Member
    March 14, 2021 at 3:43 am in reply to: New Referral Coming!!

    Hi John, you have been through an awful lot with all of those spinal issues. The only thing that ever repeated an MRI on me was for my lower lumbar area which I have set joint disorder and some bulging discs but no indication of a radiculopathy even though my doctor says my symptoms seem to be that other radiculopathy but that the MRI did not support that finding, nevertheless he still keeps mentioning a radiculopathy in the lumbar area. I don’t think I have ever had and now MRI on my neck or my upper back so I am hoping this will give some clues but every time I get a new test I keep thinking oh, this test is going to give them a clue that they need but nothing ever helps me. And I can see my muscles getting smaller and thinner even though I have not lost much weight.I just don’t understand what is happening to me. I can still do things but when I do I will suffer for days after and have no real muscle strength. I am very burnt out from living like this

  • lisa-ryan

    Member
    March 14, 2021 at 3:39 am in reply to: New Referral Coming!!

    Hi Kiki.. he has def ruled out Myositis for me so it isn’t that.. I have been in therapy before so I know all the technical aspect of reasoning with yourself but there is nothing that can change that I am progressing without a identifying cause.. you’re right, I need a doctor that isn’t hesitant, but is confident and is experienced to help me. Yes it’s definitely a roller coaster. I hope that you will get some answers with your next set of testing!!

  • lisa-ryan

    Member
    August 4, 2021 at 10:13 pm in reply to: Is this more progression?

    Thank you so much Kathleen I really appreciate the kind words and the good advice. I have been trying to do what you are doing and saving up my energy so I have some for the kids but right now everything is spread very very thin my resources are just dwindling. My muscles are constantly fatigued and aching and the atrophy is progressing quicker.

    I have also learned by not having a choice to clean much much less than I used to I have let so many things go I’m actually glad that my eyesight has got worse for up close so if I don’t put my glasses on and I don’t see all the dust lol. But seriously I think I have done everything I can except take care of my own body I just don’t know how to balance it right  now.

    Thank you very much again for the well wishes it is greatly appreciated.

  • lisa-ryan

    Member
    July 30, 2021 at 12:35 pm in reply to: Is this more progression?

    Hi John, wise words and I wish it were that simple but it just isn’t this time.  When your child is facing a beast like cancer is, I am trying to keep her calm and make her fight when it is so hard.  She is fighting but I am the person she looks to for support.  I just thought that if I knew for sure I had ALS, maybe I might ask if anyone can help out in any way and then I wouldn’t feel guilty because of putting myself before her.  Without a diagnosis I don’t feel like I should limit my efforts even though I can see it is not helping matters.  When I think about my post, maybe it is just for not because I guess I figure that if it is ALS, I know my fate so why not help a young person that has children and everything to live for 🙁  I am so devastated, I cannot believe reality right now.  The thought of her not making it is so overwhelming, not that I would ever show her my worry, I do not.  I am very sad, tired and worried, stressed.   Thank you for the beautiful words….someone was very very wise, it is very good helpful words of wisdom but in this case, I feel helpless to change my outlook.  I can try to just accept that the universe has a purpose and a reason for everything but it is damn hard right now to get through each day without pain and struggle.

  • lisa-ryan

    Member
    July 29, 2021 at 5:15 pm in reply to: Is this more progression?

    Hi Dagmar, my daughter has a late stage cancer and I have been with her every moment she needs me for her treatments, she is petrified, has never been sick in her life and is afraid of needles.  I have been spending early mornings and long days with her along with trying to babysit the 3 grandkids one weekend day per week, i am also moving to a downstairs mainfloor unit where I live.  I am exhausted but i don’t know what else to do.  I can see in the last month since her diagnosis that my body is just going downhill and the symptoms are progressing but I don’t know what else I can do, its my daughter, shes only 35 and I can’t lose her so I am putting her first because I love her so much and I need her to be around for her kids so if all I do helps her get through this harsh treatment plan she is in then it’s just what I have to do.  I know I am making my body stressed and physically it is all too much but I am lost in grief and worry and misery.  I am her rock, I am calm and focused and very important to her care.   I am just worried if I do have a slow progressive MND then I might be making it worse….I am just broken in pieces right now…

  • Hi Tom, thanks for the info.  Currently I am waiting to see the Internist that ordered the tests.  I will see her on Monday and ask her what other tests would  be helpful….maybe she will refer me for a sleep study….I think they would be able to tell if I need any assistance with breathing.  I wake up 4 or 5 times or more every night, I am never rested and always tired with a headache in the morning.  I am so very frustrated because my neuro is just taking a wait and see so I have no diagnosis so I have gone on to have my breathing checked and lungs checked via my GP.  I hope to find answers and help soon…

  • Thanks Dagmar, I will try all these tips as anything is worth a try to improve things.  I do sleep on my side but somehow during the night I always find myself on my back, even if I have a pillow wedged in my back and between knees…

  • Hi John…funny for me as well my FVC was ok, not great but they still continued on with further testing.  It was the test where you breath in and out while reclining and then while flat that they found the weakness but there is no doctor following up on this.  It’s very strange to wake up instantly with a gasp for air isn’t it…its quite disturbing to me.  Another time I woke up feeling like I was being smothered, I don’t know what position I was lying in that time.  I don’t have any answers for any of this so I am still asking questions and trying to get a diagnosis.

  • Hi Anne, thanks for your response.  In your case, what did they say is the cause of your low MEP?  So much so that you are on oxygen?  Is this all stemming from probable ALS or they just didn’t know and put you on oxygen?  Have you had any of the sleep studies done that John has had?  What type of evaluation are you having EMG/NCS Clinical?  I am interested to know because I am not getting any help from doctors anymore, they seem content to just let me sit here with progressing issues and don’t care to dig any deeper unfortunately.  It is so very stressful and frustrating and scary to be in this position isn’t it…

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