Questions and concerns

[terryburke162]

Hi. 45/f no family history of any neurological disease (that I'm aware of).

I appreciate feedback on my current situation. I've read the stickies and seem to understand "failure over feeling" which is a little reassuring but I need some clarification on this if it is ok to ask?

Brief history of why I'm here... I've been twitching in my left quad for a few months now. I went to my my doctor and they ran some bloodwork and sent me for an MRI of my spine. Both came back normal. Told me it's stress and they put me on an ssri called Effexor. I've been on that now for about 60 days and the twitching is now more widespread (back, shoulders, hands, feet, calfs...) along with some shakiness/tremoring in my arms/legs (especially after exercise!). That's all ok but what's concerning to me is if I contract my left quad muscle it looks smaller then my right really it's flatter and not as rounded as the right and I'm left handed. What's also going on in that area (right where I see the flat muscle) is a pain or soreness that lingers. It's not painful to touch but I feel a consistent pain/ache when I do any type of exercise or even over do it in the yard/walking. It's been there for quite sometime (since all this started really) and I've tried everything to get it to go away. I start physical therapy next week and have a neurologist appointment as well since my doctor offered me a referral for piece of mind. I actually even measured it and it appears to be the same size as my right, also a bit reassuring, but again I see it smaller when I contract the muscle.

So my question, does muscle wasting cause a "feeling" particularly pain/aches? My doctor insisted he had three patients of his with MND over the years and he said "No pain!" and they presented with way more then twitching. He told me to take some Aleve and also checked my strength and all was ok.

Thanks for your time!
Terry

 

[ShiftKicker]

Hello there-

Sorry your internet searches have brought you here. In the Read Before Posting you would have read twitching absent clinical weakness is not indicative of ALS/MND. And failure, not feeling, means just that- the muscle does not work. Your physiotherapist next week will be able to properly assess you and provide both feedback and exercises/stretches that can help with what sounds more like some sort of structural imbalance.

Take care

 

[lgelb]

Effexor is actually an SNRI and can create issues of its own if you do not need it. In consultation with the neurologist, you may find that you are better off without it, with a tapering procedure.

That said, it is likely PT will help you from what you describe. I agree that you have no reason to think of ALS.

 

[terryburke162]

Thanks! I truly hope it’s something structural. As for the Effexor I think my partner would leave me if I stopped taking it! But, I’m open to try something else that might work for my anxiety. I know it’s got a lot of bad side affects but doctor said that it should have worn off by now. I know for sure it’s making me eat more and im gaining a lot of weight! I’ll see how PT goes and keep you all informed. Thank you!

 

[lgelb]

There are 4 other SNRIs on the US market, so it can be helpful to try a different one under medical advice, if side effects are an issue.

 

[terryburke162]

Thanks for the replies. I’m going to follow up with my doctor to see if another med would work better for me. On another note, I had my first PT session yesterday. Really it was an eval. The therapist was a little baffled by my leg pain and couldn’t really trigger the pain on her own. She was also confused as to why my entire thigh muscle was experiencing the “aches” as I put it to her. She didn’t see anything of concern with strength when she tested me. That’s a positive. But today my leg really hurts from the eval. I’m trying to stay grounded here and not lose it! I have a family that needs me. I just am concerned still for the flattening of the thigh muscle as it’s a hotspot for twitching and these aches. Thanks eveyone have a great day!

 

[terryburke162]

Deeply sorry to post again but I've read (although not typical) ALS can be present with pain as an early symptom in one muscle group (or area) affected due to inflammation of the muscle wasting?! I'm scared my pain has been associated with the twitching/muscle flattening in my left thigh. I know no "internet stranger" can diagnose anyone but is it true? I'm extremely worried now about thinking of grabbing my partner in a frantic to have them do an ad hoc exam on me! I know it will not go over well =(

 

[Nikki J]

Atrophy itself doesn’t hurt. You have no weakness. You have seen a doctor and a pt and state you have a neuro appointment scheduled. I hope you were joking about your partner. Unless they are a neurologist they are not more qualified than the people you have seen. Even if they are it isn’t appropriate for them to examine you. We once had a worried well person whose father was an ALS specialist. they still went for a formal appointment. If your partner isn’t a doctor or pt the idea of an exam is even more inappropriate

 

[Bestfriends14]

You have not had any muscle failure, so you would not have atrophy. Atrophy comes after a particular muscle fails, rendering that muscle useless. Once that muscle has not been used for a while, then atrophy occurs as a result.

Is your partner a neuromuscular specialist? I certainly hope that you or your partner are not playing doctor, believing you know more than the specialists who have seen you.

 

[terryburke162]

Right no muscle failure (so far). I had my appointment today with a local neurologist, he checked my reflexes and tested my arm strength. Said he didn't see anything odd but did witness the twitching that I showed him in my left thigh. I had some pain getting up on the exam table in the left outer thigh and explained to him those types of movements make it worse. He said it looks like it could be related to my back and also my anxiety. Honestly, I didn't get a good sense he was very thorough, and I felt a bit rushed. In fact, the PT therapist did a more extensive exam. Either way, he said if I'm still concerned to go to a neuromuscular specialist and would give me a refferal but it's not yet posted in the portal. I don't know how I feel right now to be honest with you both. The pain is legitimatly in the area that twitches and I truly do see a flattening in that area.

My partner did in fact examine me after my last post. We spoke for a bit before and I showed them where I have pain and see atrophy. They didn't see anything alarming and came with me to the appointment today so that was nice. I appreciate you both sharing your experiences with this. It really helps me... truly does! I can't thank you both enough!

 

[Nikki J]

Your neurologist told you they thought it was a spinal issue. We told you it doesn’t sound like any ALS we have ever encountered. You don’t believe the doctor or us. Absolutely your right but we can’t help you here. Go see the neuromuscular doctor but please be prepared to believe them. Until then continuing to tell us the same thing isn’t accomplishing anything so kindly cease until you have another medical opinion to report

 

[terryburke162]

Hi, just a quick update. I was referred to Doctor Mary Seduras (as I'm currently based in the Philadelphia area). There is a wait and I won't be able to be seen until August 31st. Her office called and asked for medical records to review ahead of the appointment to confirm if the appointment is necessary or not. I'm continuing with PT and I have my first acupuncture session today. I was hoping to be seen earlier as I'm still concerned with the stiffness and pain in the leg. I'll check back and follow up if I hear anything about the appointment or not. Thank you all again.

 

[Nikki J]

3 month wait is common. So is screening because appointments are scarce.

 

[terryburke162]

Thanks @Nikki J for the quick reply. They did say they will try their best to get it moved up but mentioned they are really backed up. I knew I should have just called earlier when something was off. Oh well, it is what it is. I'm just trying everything to feel better and nothing seems to be helping with the stiffness, pain and twitching. Trying to stay positive. Thanks again.

 

[terryburke162]

Question for you all, as August is far out should I follow-up with and see another general neurologist and insist on an EMG? Or even request my Physio (MD in sports medicine) perform one? I'm struggling mentally with all of this and it's consuming me and putting me in an unbelievably bad/dark place. I'm more fatigued than ever and generally exhausted to top off all this. The medical bills are piling up from all the doctors, imaging, and bloodwork I've had done already. Would any of you push this further now with another doctor and insist on an EMG or just sit it out until August?