- This topic has 6 replies, 3 voices, and was last updated 7 months ago by Anonymous.
March 5, 2021 at 11:07 am #17960
I spoke to my GP yesterday about the report he received from my Neuromuscular Dr. He was not impressed with it at all. The Neuro mentions all of these abnormal things like weakness, atrophy, abnormal muscle biopsy, abnormalities on EMG, progressing symptoms. Then says that the bloodwork did not give any clues as to what is going on ….so he ordered more genetic testing. No impression, opinion or direction of any possible diagnosis was given after 3 years of testing.
I told my Dr. that I am progressing but after 3 years he still does not have any idea of what is going on or if he does he will not say. My doctor agreed that basically the letter says nothing. He told me to look into another neuromuscular doctor and give him the name and he will try to make the referral but that I will be starting over again from the beginning..? ( I’m pretty sure a new doctor wouldn’t repeat all the testing I have had would they??????) I am both happy and worried….what If I pick the wrong doctor, what if I go through all of this and they still can’t find anything. Then I start second guessing myself thinking what if my muscle loss is just age …and on and on….what if I am making it seem worse than it is. Lots of anxiety there. I have asked to be referred to the Ottawa NeuroMuscular Centre in Ontario Canada. This is not an ALS Centre but they do seem to diagnose a lot of rare diseases.
On another note, he ordered a C Spine and T Spine MRI. When he looked at my file, he realized that has not been done and I have thinning around shoulders with weakness and back pain.
Is the C Spine MRI in anyway diagnostic for ALS? I thought I might have read about the Anterior Horn showing up on that area. Has anyone had results from a C Spine MRI?
Also found out I have Mitral Valve Prolapse from my Echo Cardiogram, said the leaflets are thickened. I do have symptoms of it, short of breath, heart pounding and pressure, some chest pain, fatigue and I have pitting edema in my legs. I thought some of these symptoms could be from early Als but now I am doubting myself.
I was also diagnosed with Chronic Small Vessel disease in my brain from a previous MRI last year. Also, global brain atrophy with white spots….everything comes in as MILD…. I don’t understand how all of this gets put together, there is so much going on I am overwhelmed :(.
Any input from anyone who has experienced any of these things would help me a lot.
Thanks everyone 🙂
March 13, 2021 at 1:32 pm #18029KikiParticipant
Not sure if this is good or bad news. A new neuro will perhaps have a different approach and better idea of what might be wrong.I hope that you are right and have a certain form of neuropathy or age related atrophy/ myositis?. Guess a whole spine mri seems about right to rule out other things. Though when an emg Shows chronic denervations in several areas and even your brain shows atrophy I thought that this would be enough to diagnose als at least in a possible way but I am no neuro and haven’t seen your documents
Guess that the neuros are so hesitant is a good sign as they definitely think something else pointing away from ALS must be going on. I can just recommend you to have someone else look on your emg/reports in a forum or online neuros or if you can afford a second opinion. Make sure to have someone with you at your next appointment as sometimes the info is so much that you might remember things the wrong way. At least I would be confused with all these tests and medical advice in 3 years. Being in limbo is horrible but there is still hope so try to at least smile once a day even if it is super hard.
I have another emg in summer. Due to covid the waiting list is super long here and honestly I am in an emotional roller coaster every day. Although seeking psychological help might be a good idea if symptoms and thoughts prevent you from sleeping.
Wish you all the best!
March 13, 2021 at 9:26 pm #18042AnonymousInactive
Cervical spine MRI can show things like myelopathy which can be linked to radiculopathy. Radiculopathy can also cause nerve damage and is able to mimic some ALS symptoms (full spine MRI would clear that up).
I had a 4 level lumbar fusion which was needed, then misdiagnosed with cervical myelopathy which resulted in 5 level cervical fusion. Neurosurgeon said I dont have ALS, that its myelopathy and surgery would clear it up. I didn’t.
Thing is, its all in ruling out everything else in order to rule in ALS. They should always look at the spine up front. Sounds like yours may be a few years late.
March 14, 2021 at 3:39 am #18043
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!!
March 14, 2021 at 3:43 am #18044
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
March 20, 2021 at 10:14 pm #18126AnonymousInactive
Never quit. Sales training taught me a lot about motivation. Winners never quit and quitters never win. We must keep ourselves mentally fit, emotionally strong, and ready to face all that this world sends out way. Courage to do what everyone else thinks is impossible is the wind in my sail, and if we can keep that sail full nothing can get in our way. Stress and anxiety are dead to me. They do not belong in my life. I live for today, and tomorrow will take care of itself. If I am gone tomorrow, I will not have any regret for not living in the moment. ALS guarantees me that my time is valuable, so I will not waste it no matter how exhausting it seems.
And I go to sleep at night with a prayer, hope in my heart, and a peace that I get from knowing I am safe in my own bed.
March 20, 2021 at 10:31 pm #18127AnonymousInactive
“GO placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible, without surrender, be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant; they too have their story.
Avoid loud and aggressive persons; they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter, for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism.
Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment, it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.”
By Max Ehrmann © 1927
- This reply was modified 6 months, 3 weeks ago by Kevin Schaefer.
April 7, 2021 at 10:49 am #18288
That’s very touching and smart words! Thank you!
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