Really concerned about symptoms and the current process of medical exclusion I’m going through.

[dogfish515]

I am 41M (history of leukemia with stem cell transplant +14 years). I am currently having almost continuous twitching in my arm (tricep) for past week. For past several months or so I have the following constellation of symptoms: more frequent bouts of fatigue (especially after yard work and such but not always), muscle pain that lasts for months on end (currently having pain (feels like muscle pain) in back of neck/head at base of skull like a tension headache for five months, previously had pain in elbow joint for several months), fasciculations in upper arm, eyelid, lower lip, abdomen and calves (these bouts are random and not long lasting (except past couple days in arm) and never together at once), a couple episodes lasting a few days where it felt like I had constant urge to urinate, random heart palpitations, and easily throwing out my back occasionally. I have also woken up frequently with mild headaches and have hiccuped awake a couple times randomly.

I have lost a lot of weight over past couple years (-20%), but I was overweight for several years and do eat much better and less calories and my BMI is now 22, but I’m still not exercising. I also started biting my cheek a lot when chewing (not always but a few times a month it’s happened and I get cuts from it).

I have (recently since this all began) seen a hematologist, urologist, neurologist, orthopedist, GI and dermatologist. I have gotten the following tests:

ambulatory monitor for two weeks, urinalysis, bladder-kidney-scrotum ultrasound, multiple CBCs and metabolic panels, ferritin, TSH, iron & transferritin, LDH, hemoglobin A1C, methylmalonic acid, lipid panels, vitamin B-12 folate, Vitamin-D, paraneoplastic panel, copper, serum protein, EKG, echocardiogram, pulmonary function test, cervical spine X-ray, full spinal MRI, brain MRI and probably something else I’m missing. I have a EMG/NCV scheduled and am worried why they want that.

Every test mentioned above has been completely normal (hematologist always reassures me my AML is cured and shows no signs of anything in blood) besides: lower Vitamin D at times, elevated Ferritin which has been coming down and some wear and tear in parts of spine which is normal for age and they stated was fine (no stenosis or anything concerning).

I am seriously starting to worry about things like ALS (due to neurological symptoms and all tests being normal so far - diagnosis process of exclusion worries me now that the EMG is ordered) or something serious that hasn’t been found yet. I hear all kinds of things about minor symptoms like this that get progressive and even have different EMG results later.

A last note: to all of you dealing with ALS my heart truly goes out to you and I pray for all of you and your families and I thank you for all that you do for others.

 

[lgelb]

I am glad to hear that your AML was addressed with the transplant. If you received chemo or radiotherapy before that, I am sure you were told that these can cause nerve problems.

A consult with a dietician and/or PT might help you fine-tune your regimen to "the new normal," given your considerable weight loss and the strain your body went through, even though many years ago. I would also ask about an at-home sleep study.

It may seem obvious, but double-checking that all your support surfaces are everything they should be (pillow, mattress, car seat, sofa, work chair...) can reveal pressure or a suboptimal position somewhere your body isn't happy with.

Sometimes the EMG is more of a cover-the-bases than concern for a specific disorder, so I would keep that in mind. You haven't described ALS or anything like it, to me. Whatever you think you have read about "minor symptoms" turning into ALS, you do not describe any such case of which I have heard.

Best,
Laurie

 

[dogfish515]

Thank you so much for the reply! I did suffer from sever nerve pain and incredible bouts of whole body shaking and rygers for months after transplant. I was on gabapentin and neurontin but finally duloxetine for a few years. After the pain went away, the top half of my feet turned completely numb and from the arch down is hypersensitive (feels like needles when I touch it and hard to clean). After a couple years they said it was permanent.

While they said it was peripheral neuropathy, I never got that official diagnosis from a neurologist back then. I’ve felt fairly good physically all these years until now. I will note that I’ve had COVID twice (once in summer 2020 and another summer 2022). All of a sudden, this weakness/fatigue and muscles feeling like jello has come out of nowhere. Orthopedist said my muscles (neck, back, legs) were so tight he wanted to chop wood with them. I went to 10 weeks of physical therapy and they said muscles super tight. It’s so strange and now I’m getting bizarre fasciculations on top of everything.

I recognize I have PTSD and health anxiety after my leukemia. I appreciate your kind response. I am very scared of the EMG; are they uncomfortable?

 

[Nikki J]

Covid can cause all kinds of issues too. Including neuro and they can present some time after the acute infection

Emgs in my experience ( and I have had many for genetic research) are usually minimally uncomfortable. Occasionally they hit a nerve and it can hurt. They should just reposition the needle slightly and it will stop. Like hitting your “funny bone”. Some people have a much more painful experience apparently but I have had 8 different examiners and none were very uncomfortable. Do not apply lotion before the emg

 

[dogfish515]

Hi there. I just had my EMG/NCV this morning. It was at a university hospital and the Dr performing it has over 20 years experience doing these and did his fellowship for this at the Mayo Clinic.

It was not uncomfortable at all but I was shaking nervous the whole time due to the circumstance. He said it was fine that I was shaking it wouldn’t affect anything. He was so calm and patient and asked me a ton of questions about my symptoms before doing the exam. It took about an hour and he said the ordering neurologist should have his reports early next week. I am so nervous.

Thank you so much for taking time to listen to me and respond.

 

[dogfish515]

I just got the comments from my neurologist who ordered the EMG. The Dr that performed told me nothing. I have not been given the actual report, only the comments from my neurologist. She states:

“Your EMG/NCS reveals a chronic (long standing neuropathy). Abnormal neurodiagnostic study: in this clinical setting, the EDx study is most consistent with polyneuropathy, likely length dependent (worse in the lower extremities and distally), axonal in nature and chronic in appearance.”

I have ZERO clue what this means.

 

[Nikki J]

You had previously been told you had peripheral neuropathy though unconfirmed by electrophysiologic testing. Poly here means multiple nerves and the chronicity is consistent with your history. It isn’t specific here as to exactly what they saw but ALS is a disease of motor neurons and shows both acute and chronic disease. It certainly doesn’t sound at all like ALS.

 

[dogfish515]

Thank you for taking the time to reply! I finally got my actual report and attached the photos (cutting out personal info).

It is so weird. After 14 years of neuropathy in my feet, suddenly it’s diagnosed in this manner and has sudden symptoms body-wide out of nowhere?! Every day I feel so weird. As soon as I get out of bed and start walking my whole body feels so weak. I carry a bag of groceries and all of a sudden my legs and arms feel like I had an hour-long workout. I have no place to complain obviously, but I just wish my neurologist had more guidance. I asked them what all of this means and they said it can be random and to take some magnesium. No need for follow up.

 

[lgelb]

The report concludes that you have polyneuropathy as well. It is not uncommon for PN to start in one area and "spread" to others.

I would ask the neurologist for a different PT referral or a PM&R referral, and if the condition continues disabling, I would ask about a trial of an AED at a low dose.

In addition, many people with PN in their feet benefit from special shoes that reduce the pressure that can "set off" a pain cascade. A podiatrist can suggest some options.

 

[dogfish515]

I wanted to ask if you had any guidance on the difference between chronic and acute on an EMG. The findings on mine said chronic, yet there are fibrillations and positive sharp waves on there (which I thought points toward acute) - and they’re in a leg muscle where I’ve felt muscle fatigue for awhile now. Essentially I worry that this means chronic and acute but perhaps they can’t determine anything as it’s technically not in many areas they tested (they only tested right arm and right leg).

I also have been getting MUCH more fasciculations body-wide in the last month. They’re everywhere and have kept me up at night and unfocused at work. They’re in my face, back, calves, forearm, hand, upper arm, etc. and I’ve never experienced this in my life even with the history of neuropathy. I have so many questions and no plan from my neurologist. In addition, that facility is now out of network so I have to find a new neurologist.

Any input with regard to my EMG would be greatly appreciated!

 

[lgelb]

You have to look across the table for how things line up, muscle by muscle. There is no pattern demonstrating reason for concern about acute+chronic denervation + specific findings in multiple regions or even muscles, fortunately. The soleus muscle that you are evidently concerned about, that helps you walk, is often implicated in neuropathy but not as an area of ALS onset. That is why I recommended that you pursue rehab/PT, which you should be able to get from another doc by downloading the information that should still be on the neuro's portal.

Testing only one arm/leg is common and does not show any pattern that we would expect in ALS.