Seeking advice in regards to seeking out second opinion.

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Drewbaby

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Hello, I’d like to state before I explain my symptoms that I throughly read over the “read before posting” thread, an I am ultimately here for your opinion regarding a second opinion, to see if you think that I should seek one out, to be more specific. Please forgive me if I make any errors in this post. I read over the thread twice to make sure I don’t violate/negate any of the guidelines. It is extremely informative and for the very most part answered a lot of my questions. With that being said, (not that it’s a bad thing at all, Infact I enjoyed reading and learning from the insightful post) it was lengthy, and I’m going to do my best to keep all of the information in mind while I write this.

august 17th was my last day of normalcy, so to speak. I’ll try to wrap this up quickly and to the best of my ability without redundancy or unnecessary detail. August 18th, I woke up the day after a hike with my toddler and my right hand just felt..off. I could do things with dexterity but things that I would normally do lackadaisically such as flipping a light switch or grabbing something of the table were not necessarily harder, but they wernt being executed very well. I’d miss the light switch twice, I’d fumble and drop my keys, I’d miss the smartphone keyboard while typing etc.

In late October I began twitching. After a slight but acute onset of blurry vision, i took myself to the er and had an mri performed with gadolinium contrast. This yielded Very slight hyperintensity In my motor cortex symetrically. This was followed by a Relentless lighting storm of body wide fasiculation for 17 days and nights. It was constant and everywhere. Not a second passed without a twitch or three and no voluntary muscle in my body wasnt included. By the end of it, the left side of my lip was slightly drooping. I have had sarcoidosis for 3 years. Some of my friends with sarc think that I could have developed gadolinium retention as I had the strangest feeling in the base of my skull for weeks following this intense period of twitching.

the twitching finally started to subside Slowly. I thought it was over eventually but came to realize that the few twitches I did have almost daily were more so localized to the parts of my body that I’m now having at the very least perceived issues with. My right shoulder falls out of place, my right arm is soft and my wrist and hand look atrophied. My right thigh is tight and while laying on my back, will not come as low towards my butt as my soft left leg. The arm hurts from the shoulder blade to the fingertips. Dull achy pain. Some days it feels like I don’t twitch at all as of late but when I do, it’s in my smaller forearm/right leg above the knee, right tricep. Rarely do I twitch on my left side.

currently, twitching is the least of my concerns.

i have a friend with als. I mentioned my concerns to him and he was quick to point down at his split hand. He said, “look at this, this is als, you don’t have als”.

I went to see a neurologist. She tested strength, gait and reflex. The reflexes in my right arm were absent. I’m referred to have an emg performed. i spent the next two months fearing, to say the least. Finally the day came and I had what I’d assume to be a through emg/ncs performed. The doctor cleared me and I couldn’t have been happier in the moment. One of my main concerns was my right hand, as the spot that my friend with als pointed out to me seemed to be occurring in my hand as well. It’s a dip with an indescribable feeling. The doctor stuck the needle in that general area after I expressed my concerns of atrophy And said there was no sign of motor neuron disease in that spot or anywhere along my right side or spinal muscle. I noticed that my muscle sort of puffed up in that area but the dip was still present behind it. This concerned me as I thought mabye he tested a muscle next to the muscle that I was concerned about. I was also concerned that although my report read, “essentially perfect emg”, all of the LAT markers were slightly lower on my test. For example; if the normalcy of a certain LAT was >5.1, mine would be 4.7. This was a consistent trend throughout the study but I’m trying to trust my doctors expertise over my speculation.

my real concern here is that My right arm continues to shrink and feel strange. The dip in my hand seems to become more pronounced as the weeks go on, and that I presented asymmetrical reflex. I obviously have something going on, I’d like to assume, as I can’t find anything stating normalcy in either of these concerns. I am underweight, I have pulmonary sarcoidosis that contributes to this but it also contributes to a higher likelyhood or other insidious/acute autoimmune responses.

in conclusion, clean emg, clean ncs. Doc even used the term “beautiful”. Physically, I’m off kilter. I don’t feel weak but my wrist is becoming so thin and frail and the dip in my hand is constantly in the forefront of my mind. Not only because I can see it while I use my hands, but it feels so much different than my seemingly unaffected left hand.

if I’ve had a clean emg in all of the spots I was worried about, should I seek a second opinion or just take it for what it is? I’ve always had trouble understanding the people who receive good news that they’re unable to accept, but I partially understand them now as I appear to be one of them. You leave the doctors office elated and on the drive home you look at your hand on the steering wheel and realize that you left with the same symptoms you came in with and unfortunately my hand is slowly worsening. It doesn’t feel weak, but when my hand is relaxed, it’s almost as if I can feel gravity pulling down the sunken in area. The entire arm from shoulder blade to the fingertips feels achy a lot of the time.

I apologize if I violated any guidelines here, I don’t think I did but I’m sorry if I may have. I know muscle issues whether they be atrophy or otherwise can come from all types of diseases/disorders, but in combination with fasiculations, asymmetrical reflex/tight thigh, i can’t help but to think something must be going on As much as I hope otherwise. I haven’t found any information from doctors indicating that poor diet or medications can cause asymmetrical reflexes or wasting. I don’t really know what i should do next or who I should seek out medically; I just know that my body is changing slightly.

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would you reccomend a second opinion? And if so, by whom?

thank you for taking the time to read this post. Thank you for allowing this thread. It is truly admirable and selfless to have a section on this site for people going through their “what if’s”. I have someone in my life affected by als and I can safely say that it takes a warrior to fight this Disease, let alone guiding people through it or lending an ear.
 

Nikki J

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Re your comments about LAT numbers those would be NCS results not EMG NCS is not a test for ALS. The EMG is. It sounds like your ncs was normal anyway but if it wasn’t that isn’t concerning for ALS

i would suggest running everything by your pcp and sarcoid specialist. They would be better able yo say whether you need sny more neurologic evaluation. However, ALS has been ruled out so you are in the wring place here. Whatever, happens don’t let yourself turn into one of those people who go from doctor to doctor seeking a diagnosis they don’t have
 

KarenNWendyn

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You’ve posted previously. Here is the previous thread:


And the clean EMG confirms what we told you before: you do not have ALS.

No need for a second opinion. No need to keep posting here.
Best of luck to you.
 

Drewbaby

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Welp just looked back at the rules, looks like I broke the first one 🤦‍♂️ I apologize. This past few months have been a slow and steady whirlwind. Just waking up every day hoping that I’ll look at my arm and see a little improvement, but unfortunately I see a little less of my arm as the months go on.

Thank you for the advice. Unfortunately pcp’s as well as sarcoidosis specialists Are ironically clueless when it comes to sarcoidosis (went to one of the three Specialty clinics in the country just to get the same ct scan and was offered a bottle of prednisone, could have saved a lot of time, traveling and money by accepting my first offer of prednisone from my pcp) although there is some vague literature regarding rare instances of sarcoid myositis (inflammation induced atrophy) on the web. I feel like I’m teaching my doctors something new about sarcoidosis every time I see them.

Hopefully I’ll get to the bottom of my painful shrinking right arm for better or worse. Fasiculations have become the least of my concerns as of late. Thank you again For the advice, I’ll try to go down this rabbit hole successfully and find a doctor that can shine some light on my situation. I apologize again for double posting.
 
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