Slight atrophy and weakness on one side of the body

[Yvme]

Dear all, please excuse me if I’m bothering you, I need an advice! So in january, it will be 3 and a half years since i started twitching.I twitch all over, even the places I don’t have atrophy. Since than I teitch 24/7. From the very beggining i noticed that some minor atrophy is developing and since then have slihgt atrophy of my right foot, right gastrocnemius, right thenar and 1 dorsal i. Dent in right brachioradialis, and dents in right side of my tongue. When it started almost all those places started all at once. I have had numerous EMNG, and it found only decreased recruitment with big muaps small muscles of right leg, and at the same muscles on left leg but somewhat better. NCS are all great. I know that everyone will tell that pain is not related to ALS, but I have some minor dull ache at some of the places I see atrophy. It seems like my atrophy was abrupt at the beggining, then reched some plateau, and now it started again. On neurological exam, I didnet show weaknes, but I have dynamometer at home, and my grip in my dominant hand is weaker than in my left hand. I also noticed that I dont have equal amount of strenght in my right foot compared to my left. As I said, neurologist didn’t find clinical weakness, but I can feel it and I measured it at home. Neurologist saw some of my atropies and didnt think it was atrophy since she didn’t find any active denervation while performing EMG. Some of the atrophied muscles only showed intermedian recruitment (slightly reduced, but with normal frequenc of fireing) She diagnosed me with L5/S1 root problems. But i had MR of lower spine and it is remarkable. I really dont know shat else to do. Mineral status is great, tyroid hormones also. I recently noticed that my soft palate is atrophied on right side, but can still swallow food and doesnt have problems with liquids, I only feel that my left side is working more than right. Is it possible for MND atrophy to start at many places, not to develop much only minor shrinkage (my right gastrocnemius is only 0.5 cm thiner than left) and to stay like that for 3 years, and now is progressing again? I have +2 reflexes everywher except on my knees where it is +3. I really don’t know what to do anymore. Nobody is taking me seriously, but I know that something is very wrong. Please, give me some advice...or if my symptomes sounds like something let me know. I’ m scared for too long now and can’t take it to bi in limboland anymore...

 

[KimT]

We cannot diagnose you. I would write down all my symptoms on a timeline and take them to your primary care doctor. Muscles will atrophy if you don't use them and continuing to test your grip strength can injure your hands.

If you can still walk, talk, breathe, open and make a fist with both hands after this length of time, ESPECIALLY with no active denervation, your doctor will be looking for something other than ALS.

 

[Yvme]

Hello! Thank you very much for your reply! I can still do every daily tasks. I can walk on my toes and heels, i can make fists, on my dynamometer my strenght is signes as strong, but there is slight diference in strenght- my left hand is like 2-3 kg stronger than right hand...i have been to two neurologist specialised in MND, last visit was 1 month ago, and last EMG was 3 months ago, they say I’m perfectly fine. I really don’t know shat to do anymore.

 

[KarenNWendyn]

Over 3 years of symptoms and a normal EMG 3 onths ago clears you of ALS. Yippee! As far as what else could be going on— you’ll have to followup with your doctor for that.

 

[GregK]

Your Doctors and your EMG tell you no. We're NOT going to tell you any different.

Please see someone about possible Health Anxiety. That's something we cannot help with!

Good Bye and Good Luck!

 

[Yvme]

My EMG readings need explanation, question about atrophy

Hello everyone, first of all I want to say Merry Christimas to everyone!
I need some experienced PALS and CALS to look at my EMG findings.

Here it is:
Extensor digitorum brevis dex: reduced intermedian recruitment with some higher and wider action potentials about 10mV amplitude

Extensor digitorum brevis sin: intermedian recruitment with some higher and wider action potentials about 7-9mV amplitude

Flexor hallucis brevis dex. et. sin.:reduced to intermedian recruitment with some higher and wider action potentials 6-8mV amplitude

Gastrocnemius dex et sin, extensor digitorum communis dex et sin, opponens pollocis dex et sin, intermedian recruitment with some wider and higher action potentials but normal frequency amplitude

Tibialis anterior dex et sin, quadriceps femoris dex et sin, brachioradialis dex et sin, biceps brachi dex et sin, deltoideus dex et sin, adductor pollicis, abductor digiti dex et sin, intermedian to interference recrutiment pattern with normal action potentials

NCS in all extremities is normal.

Test on cryptogenic tetany is normal.
There is no evidence of fibrilations or fasciculations.

Please, tell me about emg, becouse i have some concernes reading how the other soctors are doing it. My neurologist didnt poke my muscles for few times, she stick the needle, tell me to contract the muscle and than to rest the muscle and leave every musce for like 20 sec to see if any activity will be found. I dont know why but at the time of my emg, there was no fasciculations in my Extensor digitorum brevis muscle on my right side, so it was silent those 20 sec or so. But all the other time there is almost constatnt fasciculations in my right foot muscles, and i didnt get them while i had my emg procedure. I dont know should i be worried? It took around 1 hour for my neurologist to perform emg and ncs on me, and there was brief neuro exam. Normal redlexes (+2) except my quadriceps reflex (on my knees is +3) billateraly.

I had the emg 3 years ago with the same neurologist, and the resulta were somewhat different. Exstensor digitorum brevis dex: intermedian recruitment, some higher and wider amplitude 7-9mV high frequency, Extensor digitorum brevis sin: good intermedian recruitment with soke higher and wider aplitude 6-8 mV frequency fireing. Flexor hallucis brevis dex et sin: intermedian recruitment with some wider and higher amplitude but normal frequency of fireong. The rest of it is the same.

For 3 and a half years now i have problems with right side atrophy: thumb muscles, right foot muscles, right forearm muscles, right side of my tongue has some new dents. I feel that my right hand is clumsier and cant do all the stuuf my left hand does
But it seems that the emg on my hands is ok.
I had my blod checked for thyroid, minerals, b vitamines, my lower spine had MRI (everything is great) but i still have bodywide twitching and dents on my right side. I feel that i am developing some dents on my left side since few months ago, but it will never be as pronounced as on the right side.
Neurologist saw my right calf atrophy, but after emg called it normal. I will go for another emg in a few weeks since i found some new atrophy in my right hand and am really scared all over again.

Please if anyone will tell me from their experience, does als atrophy starts in whole one side of the body and slowly atrophy all those muscles, or when atrophy starts somewhere it is a matter of months that the muscle is compleatly gone? Is there anyone with MND with lower motor neuron problems only and that it took so long for neurologist to find it is PMA?

Ive been asking about my neurologist and it seems that she is really respected here in Europe in neuromuscular diseases, her name is Marija Šoštarko, did anyone ever heard of her?

I need to find the cause for all this happening to me if this is not MND until is too late

 

[ShiftKicker]

Mod note: merged threads. Please continue posting on your open thread. Yvme- please so not start another thread. You have been asked before to make sure to stick to a single thread. It makes it very difficult for people to see your posting history. You have been asked a few times to stop, yet you continue to do so.

You have been posting on this forum for 3 years and each time, you have been told the folks here can't help you find a diagnosis. Your neurologist has also informed you it is not ALS.

Please, for any members who wish to provide advice or answer here, please check ALL the threads (there are 5) previously posted to get up to speed before replying. There is an extensive posting history from 2014 to now and it's important to read it all..

 

[Yvme]

Im so sorry, i tought that this thread was closed since i didn’t write there for some time. I know, i know you cant diagnose me, i’m just searching for opinions on the medical documentations i provided here, and to check if everything has been done correctly. I’m really sorry for opening another thread.

 

[Yvme]

I forgot to mention that i can paloate some dents in skin over my forearm flexors. It didn’t seem to concern my neurologist, but it is in for of some linear dents in subcutis. Skin looks normal, but when palpating between point finger and thumb everyone can feel linear dent and some tiny tiny nodules, like 3 mm. They are very firm. But as i sad, it doesnt seem to concern even a bit my neurologist so i never said anything about it. I know that those dents were first thing i noticed when i started panicking about als. I sometimes feel some dull pain in those areas.

 

[Atsugi]

Yvme asked: "from their experience, does als atrophy starts in whole one side of the body and slowly atrophy all those muscles,"

In ALS, the atrophy is caused by lack of use. That is, the muscle, after being completely unused, paralyzed, limp, flaccid, and not moving for some months, will lay down flat and lose the fullness and shape that it had before ALS.

So, in ALS, it would be total weakness first, then atrophy would come later.

You clearly don't have ALS. Please work with your doctors, but not here.

IT MATTERS which doctor you see. Neurologists only know nerves. Maybe the problem is not nerves. The kind of doctor who knows BOTH the body and the brain is a psychiatrist (not a psychologist). Ask a psychiatrist what they think.

Good luck.

 

[Yvme]

Dear Atsugi, I want to tell you how much I appreciate your answer on my thread. I never thought about a doctor other than neurologist, because of twitching and atrophy...and most of all because of asymmetry...it feels like someone cut me in half. Left side is completly nirmal, and right side frome toe to tongue has problems. I think that maybe there could be something to try out with other specialists. Do you think that it could be promising to visit a rheumatologist too? I’m confused, and above all scared. I try to comfort myself with facts like time of haveing symptoms and still functioning nirmally and without obvious pathologic atrophy, but it’s hard to see new dents and smaller muscles without having an explanation. Then I come here and find cases that had symptoms for 5-6 years and I’m in this for 3.5 y, and than I’m in panick mood again. It goes in circles.
Thank you very much for your time and will to help me, you have been of outmost help!

 

[ShiftKicker]

Please do not post anything further until you have seen a doctor. You have been here for years and you are asking general health questions. This is not the place to do it. Nor is it a resource for health anxiety.

I am leaving this thread open so you can come back to report what the doctor said. If you choose to post before you see a doctor, the thread will be closed.

 

[Atsugi]

Yvme, you should visit a general medical doctor first, someone with an MD. They are specially trained and experienced to lead a health investigation into whatever specialties are needed: neuro, gastro, brain-o, whatever.

As the moderator Shiftkicker has said, you need to stop wasting your time, our time, everybody's time. See the proper doctor. Start with a primary care MD.