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KEH1119

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Joined
Jan 15, 2016
Messages
4
Reason
CALS
Country
US
State
Virginia
City
Abingdon
First, I want to say thank you in advance for any guidance you may have on this matter. I am a 39 year old female and I started developing strange symptoms in the latter part of July. I have been very thankful to discover this forum and have read all the sticky notes and was initially comforted by them. At this time, however, I am very concerned and would love to hear your advice.

Approximately a year and a half ago, I noticed some changes in breathing including shortness of breath when I was working out and cough "attacks" that happened with no real explanation - periodically. My GP suspected reflux versus adult onset asthma and sent me to a pulmonologist ( I saw an NP pulmonologist). I had a pulmonary lung function test, chest xray and lab work that was normal with the exception of a sensitivity to black mold.

In June and July I began having a strange feeling in the back of my throat. Upon investigation, I noticed that my right tonsil was larger than the left. I also noticed a worm-like contraction of the muscles between the nostril and corner of my mouth on the right that persisted for 7 days. I scheduled an appointment with an ENT who examined by endoscope and stated the tonsil was not enlarged but more prominent than the left. He also stated he did not think the tonsil should create this sensation I was having. In light of he muscle twitching on the right side of my face, he recommended a neuro consult.

In the end of August, I began having muscle twitches that were diffuse. I noticed them around the left side of my rib cage at night when I was in bed before drifting off to sleep. Soon, they were body wide. The only way they stopped was if I was up moving around. I saw my GP (who witnessed the twitching/ movement around the right side of my face) who did extensive lab work and could find nothing. After several weeks with no relief she referred me to a neurologist who examined me, did emg and nerve conduction and stated nothing was wrong at all and felt it was anxiety. The movement on the right side of my face, he felt was a myokymia and was also as a result of anxiety. It stopped after 7 days.

The body wide symptoms did not alleviate following this examination, they persisted. I found another neurologist who did labs to check for vitamin deficiencies. My B12 was low around 200. After starting the injections, the symptoms began to lessen but never fully went away. Twitching persisted to a lesser degree - at night especially.

On the first of January, I began having issues with my right hand, bicep, and shoulder. The dexterity was off. I noticed when I tried to use tweezers, makeup brushes, or hold a pen. I could do it, but it was very awkward. Precision with tweezers was off. When trying to chop food my bicep and shoulder (in front and in the back around the shoulder blade) burned. It has been difficult to get the knife to go through the vegetables, sometimes I have to press with both hands; my right arm/ shoulder always quivers for a period of time after I get done.

I returned to the neurologist who found the B12 deficiency. They ran additional labs and said I tested positive for Epstein-Barr (I understand that 90% of the population tests positive for this; I had mono at age 14). Nonetheless, I was started on an anti-viral for two weeks. They scheduled EMG and nerve conduction. The neuro said nerve conduction was normal (although during the test said there was a slowed response in the forearm that could be from leaning on my elbow a lot) and said EMG was normal. He only tested one muscle though on the back of my right hand between the pointer finger and thumb.

At night, when I sleep, I have twitching all over. There is twitching around my right shoulder, right bicep and hand that I can feel when I move. I can only see the twitching in my hand when I move my thumb around - it's present at the base of the thumb. As I drift off to sleep, I can feel my tongue move/ contract quickly. It feels like I'm getting ready to swallow but I don't fully swallow. I also wake up with a gasp for air when sleeping on my back 2-3 times per night. This has been going on since the symptoms started.

I recently visited my sister who has a 5 month old baby. I had trouble holding the baby for very long. When I did, the right bicep, right shoulder burned and quivered when I held him. The next day, my bicep felt sore like I had worked out (but all I had done was hold him off and on throughout the day). We walked around the mall and the next day my right calf and right hamstring were sore - also as if I worked out.

The neuro that checked me last, did not recommend a follow up appointment. I work in healthcare in a small town. I know a neurologist locally who will see me. My questions are many but primarily, do you think I need to see someone else? Could we be missing something? Could these symptoms be linked instead of several separated problems? The symptoms I've had are new. I've never experienced anything like this before. I am so thankful I can receive feedback from anyone who has experienced this and welcome any/ all thoughts here.
 
KEH, that's the best write-up I've ever seen. It was practically a joy to read something so cogent.

I'm not a doctor, but your burning shoulder and shaking arm/hand remind me of a pinched nerve I once had.

The two clean EMGs are really good news.

The creepy crawlies are weird, though.

I think you should find out what's going on, but as far as ALS is concerned, you're clear. Don't sweat it. I don't see any ALS in your future.
 
Mike, thank you dearly for the quick response. I have to admit, it gives me a fair amount of relief to hear your response! I forgot to mention that I also had brain and cervical spine MRI's both of which were negative. Thank you again.
 
As I read it there was only one EMG and did I understand only on one muscle, or one hand muscle? What did the report actually say?

I would see your neuro acquaintance for re-evaluation.

Best,
Laurie
 
There were two EMG's. The first in September both upper and lower extremity; the second earlier this month. I was u set the impression when I went in for the second EMG that it would be upper and lower extremity on the right, however he only tested one muscle in my right hand. Nerve conduction was performed thoroughly on the right. I think the statement read muscle EMG normal- on the report.
 
And the more comprehensive EMG in Sept was normal as well? Good news...
My recommendation stands, though, presuming the R UE weakness/loss of dexterity continues unabated.
 
The more comprehensive EMG was done in September; it was on the left side of my body though. The symptoms are still present and seem to vary somewhat from day to day but always present. Thank you for that advice, I am definitely going to go for further evaluation. Are there some of my symptoms that seem more worrisome than others or is it the collection of symptoms together? Thank you
 
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