Old 08-06-2017, 09:08 AM #16 (permalink)
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Default UPDATE: Re: Muscle weakness, hyperreflexia, clonus and spasticity

My PCP told me this week that I have ALS. He was very matter of fact about the disorder and what would happen next. He suggested I visit John Hopkins or Mayo Clinic for a definitive diagnosis but things don't look good. My muscle biopsy was positive for denervation atropy which is a lower motor neuron issue. I also have hyperreflexia and spasticity which involve the upper motor neurons. The good news is, everything appears to be happening slowly so that is a blessing. I am waiting on Vanderbilt Neurology Center to contact me for an appointment but at this point....I am fairly confident that I have ALS.
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Old 08-06-2017, 06:47 PM #17 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

Hello,

I'm so sorry to hear of your diagnosis.

Yes, please get a second opinion at an official ALS site. Did your doctor say that he is suspicious of ALS or that you have it for certain? I'm only asking because in Canada, a PCP cannot give an ALS diagnosis, but merely refer off if suspicious. Most GPs (PCPs), do not have the training, education or expertise to do so.

I do hope he's over zealous in his thoughts, but again, the only way to know is to get another opinion, which is exactly what your are doing.

My thoughts are with you while you wait for an appointment.

Take good care
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Old 08-07-2017, 07:41 AM #18 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

Thank you, he told me it was the opinion of my neurologist. I appreciate your kind words.
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Old 08-07-2017, 08:28 AM #19 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

I'm sorry for your diagnosis. My husband was recently diagnosed after nearly two years of symptoms, too. He, too, is in his 40s.

Thinking of you and your family.

J
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Old 08-07-2017, 10:15 AM #20 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

I am very sorry. It sounds different than what the neurologist told you though? There were still other things in the differential and have to wait and see? I hope this means there is still some doubt as surely the neurologist would have told you if he was certain??

It sounds as if he felt it was beyond his expertise as he referred you out. I hope you get seen quickly. The wait at this point is excruciating I am sure. Keep us posted
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Old 08-08-2017, 06:24 PM #21 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

Hi, thanks for the response. How bad were your husband"s symptoms after two years? I still feel pretty good and am able to walk...poorly.
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Old 08-08-2017, 06:30 PM #22 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

I do not exaggerate when I say that my neurologist was absolutely horrible. He told me in June that it was not ALS, then after my muscle biopsy, he said that it could be ALS. He did not order anymore tests or even schedule a follow up appointment. My Neuro and PCP were communicating and that is why my PCP had the discussion with me. I just want to get a second or third opinion at this point..it is confusing I know.
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Old 08-08-2017, 07:34 PM #23 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

My hubby's lower left leg is floppy with 0 muscle response up to his knee and very little response up his thigh. He cannot walk with out a brace and needs to walk with a cane. His left leg has atrophied to half the size of his right.

The disease has spread to his right leg and right forearm, but to date he has had no symptoms in those areas.

I hope your neurologist was incorrect in his thoughts. I am definitely no expert, but I've never heard of ALS being diagnosed via muscle biopsy; only through clinical exam and EMG. Of course i could be wrong.

Fingers crossed that your second opinion comes through quickly.
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Old 08-09-2017, 03:08 PM #24 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

My neurologist performed the muscle biopsy to determine if my problem is with muscles or nerves. It confirmed that I have denervation atrophy which is an issue with the nerves. This indicates a lower motor neuron problem. I am also spastic with hyperreflexes which are upper motor neuron issues. Gaaahhh I am so tired of thinking about all this
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Old 08-10-2017, 10:43 AM #25 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

Oh, I didn't know that! What this disease makes you learn on a daily basis.

Take care and please come back and update when you get an appointment.
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Old 08-11-2017, 04:52 PM #26 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

Has there been any discussion of PLS? The hyperreflexia and spasticity was part of the reason my doctor looked into that in the first place. I know that in different areas some neurologist don't recognize primary lateral sclerosis as being a different disease from ALS, but mine does.
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Old 08-11-2017, 06:39 PM #27 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

I have an appointment with the Mayo Clinic in Florida on August 28th...hopefully all my questions will be answered then. What made the diagnose you as ALS instead of PLS?
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Old 08-11-2017, 07:02 PM #28 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

The stiffness and hyperreflexes were, as I recall, the first indicators that we may be looking at only upper motor neuron involvement. My neurosurgeon insists it's all ALS--like on a spectrum-- but my neuro at Dent institute believes it is a separate illness. I'm choosing to go with my Dent neuro. He is an expert on this, after all.
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Old 08-12-2017, 05:35 AM #29 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

I am so sorry about your diagnosis. The path to getting to it is not an easy one for sure. I think my husband and I both were relieved when we got to the ALS Clinic and had the final word in a weird way.

It sounds like per usual you have been put through more than you needed to be in the process. Best wishes with the specialist.
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Old 08-12-2017, 01:26 PM #30 (permalink)
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Default Re: Muscle weakness, hyperreflexia, clonus and spasticity

I am so sorry to read about your diagnosis.

Still, given the peculiar circumstances of how you were diagnosed, I agree with others that a second opinion is warranted.

I encourage you to seek out that second opinion for a neurologist who specialises in neuromuscular diseases.

Steve
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