ALS Anxiety - Soreness/Tightness/Twitching in Thigh

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PhilipFromGermany

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Hello everyone,

My name is Philip, I am from Germany (hence the username) and 36 years old.

I have read the sticky post and would say, based on my symptoms (so far) - I should not trouble you with this thread. However, within this forum, there are also multiple threads that contradict the sticky post (a bit) and right now I am very anxious about my symptoms and would appreciate some insight.

Roughly 2 weeks ago, I developed a dull soreness/pain im my frontal right thigh above the knee. I did not do any excercise before, that could account for the soreness (I did, however do some very heavy lifting one week prior - without noticeable pain). For the last two weeks I have felt this soreness/tightness and numbness (in the muscle, not on the skin) in other parts of my right leg, mostly while lying down - in the upper calf, the backside of my thigh and the butt-cheek. I also feel dull pain while flexing the thigh (e.g. standing on the affected leg and doing one-leg squats). It was almost gone in two days, but not completely and returned both times the following day. Two days ago, I went for a small run (the first in a long time) that I could do with only a little pain in my thigh and in my lower back - but since then I have increased pain in my thigh and back and also some sporadic twitching in my thigh while lying down.

So far, I did not notice any weakness or atrophy in legs and feet and no symptoms in my arms, hands or with speech or swallowing. No tripping, falling or dropping things and - apart for a very slight limp because of the thigh pain - no change in gait.

I am worried, because I can't see any immediate cause for my symptoms and the do not seem to alleviate for now. I am missing some symptoms for explanations like sciatica and I have read some posts on this forum that described the onset of ALS in their cases with pain and localized twitching. I have been very anxious about this for the last days and could not really sleep/think about much else - that's why I decided to ask for advice here.

I have not yet seen a physician about this.

Any advise on this is highly appreciated. Should I worry about a MND with those symptoms?

Thank you and best regards and wishes,

Philip
 

lgelb

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I would not worry. But it will reassure you to see a physician, so why not?

S/he may advise you to do physio for what could be an injury from the heavy lifting -- perhaps a muscle strain/small tear. At any rate, you will have a baseline to work from.

Best,
Laurie
 

dldugan

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See a physician. Guessing and Dr Google can not help you.
 

PhilipFromGermany

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Hello everyone and thanks for the replies so far.

Upon your advice and because of some severe anxiety because of this, I have now seen 2 GPs. The later one turned out to be a neurologist, working in a GP office.

The neurologist checked me for signs of weakness, spasticity and rexlex changes. She saw no weakness or atrophy and no hypertonia. She noted brisk reflexes but thought them to be not pathological, because they were equally brisk everywhere. She did not see any clonus and I had negative Hoffmann and Babinski sign (although, she could not elicit any plantar reflex). She also tried to see or feel twitching but didn't notice any.

She told me (mostly I think to also calm my anxiety), that I do not have ALS. However, she also could not offer an alternative cause for my muscle pain in my right thigh. She scheduled me for a large bloodwork in one week.

Meanwhile my symptoms persist. My right thigh hurts (in the back and front) when I put pressure on specific muscles (soreness feeling) and I feel occasional twitching when I am resting it (although it also twitches in my other leg, but less frequently).

I also have some dry mouth issues for the last days and some difficulty swallowing dry goods - also some strongly reduced appetite. I think and hope that this is mostly due to my anxiety and lack of sleep. Can ALS cause bulbar AND lower limb symptoms within weeks?

I have also called a friend of ours, a neurologist who works mainly with ALS patients and she said not to worry, since ALS does not usually present itself from the onset with the type of pain I am experiencing.

The thing that still has me worried: they could not offer any alternative diagonsis, either.

I am awaiting my bloodwork and try to not go crazy in the meantime.

Any advice for me in the meantime would be appreciated.

Best regards, Philip
 

ShiftKicker

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Philip, this forum is a support forum for those with ALS and their caregivers. You have been cleared of ALS. While we sympathize that you have not been given immediate answers, there's not much more that we can do for you here except advise you keep working with your doctors and let them, the medical professionals, guide you. If anxiety is affecting you so badly in the meantime, perhaps a counselor is a good idea- they can help you with various ways to manage stress while you wait.
 

lgelb

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Philip,

It is much easier to dismiss a disease like ALS, which has specific manifestations, than to apply an alternative (especially for your friend, who has never even examined you!), of which there are many, the most common being that you are fine physically but anxious about noting things about your body that are unusual for you.

Normal bodies feel pain, twinges, soreness, tightness, numbness, tingling. Many of our visitors seem not to accept this. If nothing serious comes out of your diagnostic process, which it hasn't yet, I hope you can feel appreciative of your good health, address your anxiety, and get on with living your best life.
 

PhilipFromGermany

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Hello everyone,

thank you for your replies and I want to assure you that I understand the difficult situation this section of the board presents. People who either have this horrible disease or care for someone who has it, take time out of their day to counsel others that are afraid they might have it. I imagine that can potentially be very frustrating. So therefore I really appreciate any replies.

I wanted to give a short update on my symptoms and diagnostic process to see if anything stands out to someone and also to not leave this thread in the air.

It has been three weeks since my last update and unfortunately my symptoms have progressed in that time. I still twitch in both legs and on other parts of my body (abdomen, sides, shoulders, arms and twice in my eye-lid) but it is more pronounced in my legs and specifically the affected right leg. The pain / thightness in my leg is more constant now and also has spread from thigh to calf. It is more noticeable in the evening. I still can not tell any clear weakness of the leg. I can still walk on tiptoes, heels, do a one legged squat and so on.

In terms of diagnostic process, I have had a big blood-work done and (fortunately or unfortunately) the only thing of note that it revealed was a vitamin D deficiency (I am taking some supplements for that now). It also includes a (negative) test for Lyme disease.

Yesterday I saw a proper neurologist in a big, professional location and he did a neurological examination, NCS and also an EMG of my frontal thigh muscle and my calf. He did not see any clinical weakness or other neurological abnormalities. My reflexes were symmetrically "mittellebhaft" - which I think is 2 on the reflexe scale. No clonus or Babinski. The NCS did not show anything either and the EMG of the two muscles showed no spontaneous/involuntary activity (I could also not feel a twitch during the EMG), normal MUAP and normal interference pattern. His conclusion was, that at the moment he sees no indication for a motorneuron disease or myopathy and I should come back if the symptoms persist or significantly worsen. They also took some blood for a CPK test but said they would only contact me if it shows anything abnormal. So far, no answer (I don't know how fast their lab works).

So while I am very glad that the EMG and exam did not show anything that points towards MND, this now unfortunately leaves me in limbo with worsening symptoms and no diagnosis or treatment of any sort.

I guess/fear there is not much to do but wait if the symptoms go away or manifest themselves in a different way that allows any kind of diagnosis. I will keep this thread updated if you don't mind and (as I said) appreciate any replies/comments in the meantime.
 

PhilipFromGermany

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Short correction: going over my report, the EMG in the calf reads No spontaneous/involuntary activity, normal MUAP and "Übergangsmuster" - which I researched and translates to "intermediate or reduced interference pattern". The thigh says "normales Interferenzmuster" - "normal interference pattern". The neurologist did not mention this at all, and gave me his conclusion verbally and in writing, as mentioned in the above post.

Does this change anything?
 

Bestfriends14

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Philip,

While I empathise that you have perceived yourself to have an illness, that Iillness is not ALS. I then ask, why are you here? Cleared twice of ALS by clinical exams and EMGs, you now need to seek an alternative path to diagnosis. That diagnosis is not ALS, therefore, coming back to an ALS forum to seek answers is a fruitless effort. That's not what this forum is for.

Best of luck to you.
 

affected

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Phillip I don't see a single hint of any progression in your post.

Progression would be that you now have clinical weakness.

You see ALS is a disease in the brain, not in the muscles. You are focused on twitching which means nothing on its own.

You have now been told by an expert who got to put their hands directly on you and examine you. I know you are scared, but to continue here will be badgering terminally ill people and those who care for them.

Please go in peace and find your solutions with your PCP. We cannot help you but are thrilled that you had this result. Congratulations!
 
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