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Mamabear2017

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25 y/o female of 2 young children here. I've been under a lot of stress this year.

Starting in January I started getting horrible tension headaches, body wide pain in almost every joint, bone and nerve. The doctor said it was TMJ.

Went to the oral surgeon he ruled out TMJ.

Went back to the doctor and had an xray of my spine and CT of my cervical spine and head. Both tests were normal. The doctor did some blood work and it came back that my vitamin D was a little low 28 (range 30-100). Started vitamin D replacement in June 2018 and I started feeling much better after 2 weeks on 4000 IU.

I had a few good months with only bouts of pain very minimal. Come August 2018 I had what I call another episode of pain. I admit I was under a lot of stress at the time (the doctor suggested fibromyalgia without any testing therefore I did not accept that diagnosis). But this episode was different.

After about a week of pain August 10th I went to see my chiropractor after my vitamin D level was drawn (45 considered normal). I had only been to the chiropractor one time. this time he did some trigger point therapy close to c1 and used a muscle stimulator on me.

During the muscle stimulation I had visceral twitches (felt like it was in my uterus). I didn't think much of it (chiropractor said it would not cause adverse symptoms not so sure now) I went home feeling unusual. Is it possible the current from the muscle stimulation irritated my nerves? No information supports this theory.

The following morning August 11th I woke up to extreme muscle twitches in my calfs bilateral. I took to the internet for answers MISTAKE.

The muscle twitches spread from my calf (had a hot spot for a while) to my arm, to my shoulder blades, chest, feet, gluteals, ribs. Body wide fasiculations constant, too many to count.

I made an appointment with my neurologist they got me in Aug 14th 2018. Neurologist concluded that I did not have weaknesses, atrophy or any other findings except bilateral hyperflexia (brisk reflexes) at the knees. She did not notice the twitches. She told me a list of things she would be looking for gave me an order for blood work, MRI, EMG. On that list of probable cause was demyelinating disease which did not calm my nerves.

So far I've had about 12 different blood tests (all negative) MRI or head and cervical spine normal. The EMG cannot be done until September 14th.

I'm worried I have a family to take care of and I start 2nd semester RN school on Tuesday. I've had fasiculations for 8 days consecutively.

At first fasiculations were strong. As the days go by i either don't notice them as much, or they are much less but they keep coming back. They were present at rest, would go away when I flexed my muscle. Now my muscles are more relaxed at rest I have less when laying down than I do when I'm sitting up right.

I've also experienced some cramping in my calfs that feels like contractions. My muscles will get extremely tight then relax I've only had this happen a few times only in my calfs.

I understand that this is early it's a process of elimination. But I'm still worried. Im sharing my story in hopes to receive some reassurance during this time of uncertainty.

Thank you. God bless.
 

lgelb

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My best advice is stay away from the chiro, get a real massage from an MT that specializes in neuromuscular issues (see the AMTA site), stretch day and night, reassess your postural support in studying, keyboarding, sleeping, etc. and enjoy your family/focus on your nursing program.

And find something that relieves the stress that manifests in your muscles/headaches such as Pilates, ballet, music, nature walks, what have you. You may also want to share more/differently with friends and family, or find a group that suits you.

The EMG is not likely going to provide an answer -- a good thing. The solutions are likely all on you.

Best,
Laurie
 

Mamabear2017

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Laurie,
I appreciate your response. I'm waiting for aboutbfs to approve me. No one I know has gone through anything similar. The neurologist said not all symptoms are related and she's right. That's what makes me worry most. But again thank you for passing on hope.
 
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Nikki J

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You unfortunately will wait forever for aboutbfs. The admin was the only person who could approve and he abandoned the group. There is a decent facebook group if you search.

You may have more than one issue but agree with Laurie it doesn’t sound at all like ALS.

Re what was written on your test requisition. You will learn as you go further in your career that doctors have to write things to justify ordering tests and sometimes ( often) it is something they don’t think you have but something that they can stretch for and they know insurance will cover
 

Clearwater AL

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If I may parse some of Nikki's reply above,

"Doctors have to write things to justify ordering tests and sometimes ( often) it is something they don’t think you have but something that they can stretch for and they know insurance will cover,"

Key words... "it is something they don’t think you have but something that they can stretch for and they know insurance will cover,"

In time to come if you complete your RN schooling and become an RN at some
large medical facility maybe you'll think back to what Nikki wrote and... smile. :)

Hope for the best.
 

Mamabear2017

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Thank you all. I've been in touch with a few people regarding bfs. I'm going to see a new neurologist tomorrow he's conducting my first EMG.
 

Mamabear2017

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Anyone get diagnosed with radiculopathy then ALS?

I posted before about my symptoms.

Since then I had an abnormal EMG indicating chronic c5-c7 radiculopathy, lumbar radiculopathy,

demyelination and axonal loss of sensory nerves (sural, posterior tibial) bilateral indicating sensory polyneuropathy.

Doctor said ALS is still on the table even with the diagnosis of radiculopathy.

EMG neuro wants me to do small fiber emg, sural nerve biopsy, and lumbar MRI. He also didnt want to deal with my case and referred me back to my first neurologist.

First neurologist doesn't want to do invasive testing at the moment and wants to do the EMG herself so I get to do another EMG on the 14th.

Im perplexed how testing works.

Cervical/brain MRI was normal yet EMG shows radiculopathy at cervicalspine?

Did anyone initially get diagnosed with radiculopathy, later to get diagnosed with ALS?

Also what tests confirmed your diagnosis?

My symptoms are progressing still no clinical signs.
 

ShiftKicker

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Mod note- merged with already open thread. Please continue posting here as it helps members see entire diagnostic journey and what questions have been asked and answered already.
 

Mamabear2017

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EMG help

What does (+2) fibs mean? Fibs were noted at deltoid, biceps brachii, 1st dorsal muscles right arm.
No positive waves, recruitment duration everything else normal.
 

ShiftKicker

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Mod note- merged threads. Please post in this thread only. As explained above, it helps members see all info in one place and means people don't have to navigate all over the place in order to see your information.

Per forum posting rules here:

https://www.alsforums.com/forum/do-i-have-als-als/28837-do-not-open-multiple-threads-read-if-your-thread-disappeared.html

and here:

https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html (per the section titled "Finally")
 

Nikki J

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We could answer better if you were able to share the emg report ( both the impression and the tables) so we could see the whole picture. I am very confused by the comment ALS is on the table and the plan for a single fiber emg as I see no reason for either from what you have posted

Certainly there are spinal issues that can show on an emg and not on an MRI
 
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Mamabear2017

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Niki, neuro said central lesion cannot be entirely ruled out. I asked him is anything was ruled out he said no. I dont understand either of he was confident in his diagnosis or radiculopathy. I have neck issues on my right side that's what all of this started with MRI shows mild straightening of cervical spine but no pinched nerves. Lumbar region I've had issues with as well from my profession. The twitching is more pronounced on my left side now it still migrates. I don't have weakness at the moment but I do have cramping and other strange sensory issues (could be polyneuropathy). I just dont know what to think I'm worried he wasn't confident in his diagnosis of radiculopathy something is definitely going on with my nerve roots in these areas.
 

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KarenNWendyn

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I read your post and EMG report.

So the neurologist did not find evidence of weakness — good!

The EMG showed a sensory neuropathy and mild radiculopathy. Nowhere in the EMG report does it mention the dreaded words “denervation” or “reinnervation”.

It does not sound like ALS to me. You have some neurological problems they are still evaluating. Let them finish their evaluation and then come back here and let us know the outcome.

Even though neuro didn’t say anything was ruled out, I can tell you that ALS would be extremely unlikely given absence of weakness and your EMG findings.

I recommend letting go of worrying about ALS, following through with the suggested evaluation, and then letting us know the final outcome.

Until then there’s really nothing more we can tell you, so no need for you to keep posting in the meantime.
 
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