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Leffty99

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I'm a 59 year old active Caucasian male with an unremarkable health history until early 2019. I'm 5'9", 168 lbs. I've been married for 37 years and fully functional socially and professionally during the same time.

In, March of 2019, I started having some odd muscular issues develop. Initially, my muscles felt heavy and stiff...much like I had put myself through a heavy workout, but had not. My PCP did a thorough exam/screening through extensive blood work for a variety of issues such as thyroid, diabetes, rheumatology, etc. All lab work came back without concern.

Soon after my initial PCP appointments, more symptoms developed: lethargy, more muscle stiffness, muscle cramps, and twitching. Pain in muscles too, but not sure the direct muscle pain is originating from the stiffness or cramping. I eventually had 2 NCV/EMG studies performed by two different Neurologists.

The first NCV/EMG was in June Of 2019. By this time, I was having more widespread muscle stiffness and twitching with large muscle jerks at rest and during sleep. The NCV/EMG results did not reveal any pathology.

Six months go by and other symptoms develop. Hand stiffness pain (Thenar cramping pain), tongue stiffness, cob-web sensations in the lower 1/3 of my face, increased lethargy, generalized stiffness, and twitching/cramping. Elevated pain upon muscle usage and difficulty with duration of muscle usage.

January 2020, second EMG made by a second Neurologist. NCV showed Right Median (wrist) Anti Sensory at 13.8 P-T AMP and EMG was normal.

Today having muscle pain with the smallest amount of function/usage. Lifting items now seems more difficult and duration of muscle usage is difficult. Trembling begins soon after muscle function/contraction begins. Trembling upper body can be felt when I lay down at night…feels like I’m on a vibrating pad. Facial twitches, hand cramping, muscle itching, tongue stiffness present too.

Eye muscles are having trouble locking in on objects and feel to be working hard and become painful too. Ophthalmologist says eye muscles are having difficulty and can’t get eyes into prop position creating a blurry image. Dx: Dissociated Exophoria. They are unsure whether this is related to my other symptoms since this can begin to happen within my age group without a underlying medical condition.

Neurologist then recommended LP - with results of elevated protein in the CSF at 74 He also ran a titer for the IgG/Contactin-1 which was Positive.

Even though NCV exams have been normal and I have negative test results for any inflammatory processes taking place. The neurologist is leaning towards a CIDP diagnosis. I’ve been given Rx Prednisone 40 for 10 days to see if there is any improvement in my symptoms. Half way through the Rx with no improvement of symptoms.

Questions:

With elevated CSF proteins, should MND still be a possible reason for my ongoing symptoms?
Should a 3rd NCV/EMG performed? If so, when?
How is an eventual diagnosis between CIDP and MND eventually made? Time and Observation ?

As always, thank you very much for your time and insight you provide to everyone within this forum!
 
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Your sensory symptoms, contactin-1 and csf protein are all consistent with CIDP and not ALS. There does not seem any reason to have a follow up emg for ALS

if you have not yet seen a specialist at the tertiary/ university level you should but ALS really seems off the table

CIDP is not easy but infinitely preferable to ALS. I encourage you to explore the Facebook CIDP groups

best of luck
 
Nikki, thank you so much for your rapid reply. Yes, one of the NCV/EMG tests was performed at the University level. I have confidence both Neurologists, but the Neurologist outside the University level has been the most proactive in helping me work through these issues. The Neurologist not affiliated with the University was the one who ordered the LP study and advanced bloodwork. Consequent, this why I'm a little confused on the direction I should go for further evaluation and the direction my symptoms have been taking me.
Thanks again!
 
Since CIDP is rare you need to find someone with experience in treating it. Ask in the facebook groups but also reach out to the University neuro and then do your own research
 
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