Update and continued concern

[Lizzypip68]

Hello again
Firstly I apologise for posting again but it has been several months since I last posted, the thread now being closed, and my symptoms continue to progress and leave me extremely worried.
Since my last post I have had an MRI scan of my lower back which did not show any current nerve impingement although it did show signs my previous surgery. I spoke to my GP and also had a letter from my neurologist who prescribed Lyrica but felt that no further action was required.
Over the ensuing months my fasiculations have intensified and now affect almost all areas of my body constantly, 24/7, with no let up - it has been 11 months now. My left calf remains the most troublesome but they are literally everywhere, continuously and do not move from muscle group to muscle group but remain constant in multiple locations. I can still walk long distances, run upstairs if required, walk on heels and toes but all of these activities cause a lot of pain.
I visited my GP in November’s due to the increased twitches and he remained unconcerned but did write to my neurologist for an opinion - he responded saying that he had reviewed my MRI scan, his notes from my clinic visit, my EMG and nerve conduction results and had also spoken to the man who oerformed these tests. As a result of these he was happy to provide a clear and conclusive opinion that I do not have MND nor were there any signs that I would develop the condition in the future.
Since this time things have steadily progressed and I have recently noticed that the index finge of my right hand twitches involuntarily and there is a constant pulsating twitch in my inner wrist area, I brought this to the attention of my GP who dismissed it as anxiety. Since then I have started getting a lot of muscle aches in my right arm whenever I use it. I have not noticed loss of strength in my hand etc but when I pick up a heavy object I get pain all down my arm and a feeling of light cramping in my fingers. I can still turn keys, do up buttons, unscrew jars etc but the arm and hand ache a lot. My body jerks in many areas and I also have a lot of muscle cramps in my legs and feelings of slight cramping pain in hands, back and even neck area.
Obviously I have read the stickies etc but also recently read a post by preacherman In which he described almost exactly the symptoms that I have re ability to do things but having a lot of pain as a result.
My GP is chalking this all up to anxiety and I am currently awaiting CBT sessions and have started taking beta blocker medication, without any noticeable improvement in symptoms. I do have a lot of stress in my life presently but find it hard to believe that all of my symptoms are caused by it.
I do hope that I have not annoyed anyone with this latest post as that is not my intention but I would very much appreciate your thoughts on this as I remain extremely concerned.
Thank you

 

[lgelb]

Lizzy, the point is that you can still do these things -- Preacherman cannot.

The hallmark of ALS is increasing disability, not increasing twitching and/or pain with continued physical abilities.

I don't know what dose of Lyrica you're on, but as it affects the nerves, some people will have issues from the drug itself. I trust your dose has been re-evaluated for efficacy since you began. If it has not had a significant benefit, physiotherapy might be more on point, as well as exercise such as swimming, tai chi, ballet, Pilates, etc. to see if your muscles can be elongated to good effect.

As for the beta blocker, it too has a potential down side, unless you truly have tachycardia and there are other medication classes as well. I would require that it too carry a burden of proof. Certainly it goes without saying that managing your stress can't but help as well.

But to answer your question, I see nothing in your update that suggests ALS.

Best,
Laurie

 

[affected]

I hope you can get some help from your doctors - you actually don't show any progression as this would mean you are now failing to be able to do things which you are not.

Don't use a single post by preacherman to try and build a case for yourself please - the fact you are trawling here looking for something to back your story up tells a lot ...

I truly hope you can get help for your symptoms that are concerning you.

 

[Nikki J]

You had a normal EMG. Preacherman did not- even in places he felt no symptoms.

Also reviewing his initial thread his symptom picture was worrisome and we told him so. The entire thread no one here said he was in the wrong place. His replies were focused on how to get information from doctors, supportive statements and even talked about veteran’s benefit which is a clear signal that we felt ALS was a real possibility.

 

[Lizzypip68]

To Laurie, Tillie and Nikki thank you very much for your replies, they do reassure me and are much appreciated. I do take on board what you say about progression being about failing and also acknowledge the point raised about me still being on here. I am actively seeking help re anxiety/stress as I do acknowledge that this is a factor. Laurie thank you for your input re my current medications, I will discuss them with my GP, and also look into relaxation activities.
I did not have a normal EMG though, it did show various things (posted previously) which were attributed to my back prior to MRI. I think that is where my worry remains as the MRI was subsequently clear,
I have no wish to take up your valuable time however and will try to keep away from here and work on managing stress/anxiety and getting on with life. Thank you all again.

 

[Bestfriends14]

Hi Lizzie,

You did NOT have an abnormal EMG for ALS. There is a very big difference. For ALS, you have had consistently normal EMGs and clinical examinations. This means you need to take ALS from your list, move on from the forum and work on the matters that are relative to your issues. CBT is an excellent therapeutic tool and perhaps that's where your focus should lie for now. Twitching and jerks are not indicative of ALS, whatsoever, on their own. Period.

Good luck with CBT. Again, it's an excellent tool used for many psychological ailments with high success.

Take good care.

 

[Lizzypip68]

Firstly I am very sorry to be here again and have no wish to annoy anyone, but am genuinely very concerned - I have made a GP appointment but cannot attend until late next week.
The pain in my right arm has now increased to the point that it is now affecting day to day activities, an example being that I can no longer use that arm to hold my mobile phone to my ear because the aching is too bad; I also find that my left arm aches but to a lesser extent than the right. The pain seems to be largely in the outer side of my arm, extending the whole way down including my hand and fingers. I remain able to lift heavy objects but again the pain is pretty intense and extends into my fingers along with a shaking in my whole arm when I put it under any strain. Also when I press the muscle in my upper arm and shoulder it increases the pain.
Having reread your replies it is mentioned that an inability to do things you once could is a sign of progression and I wondered if what I describe would now put me in that category? My bodywide twitching continues unabated along with jerking of my fingers, toes and sometimes my head and arms, I feel a constant internal buzzing sensation, mainly in my legs and torso but also intermittently in my inner wrist area.
Please could anyone advise whether any of this is consistent with their experience? Thank you.

 

[Nikki J]

No it isn’t. You can’t do something because it hurts so much you can’t bear to do it. I can’t do things because my body does not respond to my brain saying do it. I feel fine and continue to be surprised at my failure. I think I should be able to rise up on my toes for example. I know how it do it I feel as if it will happen — but nothing moves. Zilch. No pain for me at all.

Something is wrong with you but you are not describing ALS and you had an EMG that did not show ALS

 

[Lizzypip68]

Thank you Nikki, I do really appreciate you taking the time to respond and wish you all the best.

 

[Lizzypip68]

Hello again, I sincerely hope that I am not being a nuisance and do not want to present as someone “just with health anxiety” as my symptoms are very real and causing me a great deal of distress. I have been back to my GP who did not examine me fully, asked me to do a few movements with my arm, and felt it was possible that I have a rotator cuff injury in my shoulder. I explained my continuing concerns re MND and she dismissed them saying that I’d had an EMG which was clear for the purposes of MND so I should put it out of my mind.

Since this visit my arm continues to be bothersome but also the twitching/fasiculations in my legs have increased hugely. My left leg (initial presentation) and foot ( sole, sides etc) are constantly moving which is causing all of my toes to involuntarily move. I also have slight cramping throughout this leg and also in the side of my outer right calf and right arm; this is not full blown cramp but a constant mild ache which is sufficient to prevent me from sleeping properly. My index fingers and thumbs on both arms (more right side) also move involuntarily.

I intend to see my GP again but feel that I am not being taken seriously as I am never examined, reflexes tested etc, and they are keen to say I should forget MND due to one EMG performed 3 months after the twitching started. My symptoms are much more widespread and troublesome now and I would appreciate advice as to whether my GP is correct or whether I should push for further testing - I guess what worries me most is that my EMG was not entirely clean but was considered clean for the purposes of MND. With my symptoms continuing to worsen, albeit re twitching and cramps rather than clinical weakness, should I be concerned or believe that this can all be put down to anxiety?

Many thanks once again.

 

[Bestfriends14]

Lizzy,

You've posted 11 times in three weeks; yes, you are presenting as someone with health anxiety that is clearly out of control.

I'm not going to answer your ALS question as they have been answered time and again by health professionals and forum members and you're not believing any of the answers. I will say this, though, is that you should consider a psychological health route with the prior suggestion of CBT. That is a more realistic path for you to follow.

Take good care. Good luck and please be well. Goodbye.

 

[Lizzypip68]

Firstly I apologise for being here again as the previous reply indicates that I am being seen as a health anxiety person, Please believe me that my symptoms are very real, bothersome and causing me genuine concern or I would not be here. I also have not posted 11 times in 3 weeks, only when my symptoms progress.

Please can I ask that you respond to my fears re my ongoing symptoms; if you still think I have nothing to worry about then you have my word that I will not trouble you again.

My right arm is continuing to concern me and is becoming very awkward to use. I have pain in the shoulder blade area, which is triggered by touching it, and pain all along the outside of the arm and into my hand. My index finger (which is constantly twitching) aches, with pain in the knuckle area, wrist and forearm. If I lift the arm up it aches and hand movements are becoming very awkward - yesterday I went to unclip my dogs lead and the hand simply did not want to work, as if paralysed, but after a few seconds it returned to normal. Holding a toothbrush and cleaning my teeth feels awkward, it’s not that I can’t hold the toothbrush but my wrist movements feel very awkward and again triggers aching pain.

In recent weeks I have had trouble writing, the act of holding a pen causes pain in my fingers, wrist and arm. It’s hard to describe the pain but it’s like a mild cramp or nerve type pain and makes me want to shake my hand and flex my fingers. This happens whenever I need to use my hand/arm to perform daily tasks

I can still lift heavy shopping bags, do a couple of press-ups etc but it causes pain and a feeling of shaking whenever I do. The arm has a permanent dull ache which intensifies with use.

I have seen my GP again, who this time did a full examination, checked arm and leg reflexes and performed basis strength tests, all were normal. She noted the fasiculations but feels that als/MND is unlikely after 13 months without more significant progression. I am to have an ultrasound of my shoulder in 2 weeks.

Please can I ask for opinions on my arm/ hand symptoms and whether you can see any areas for concern. Obviously I have read the stickies and seen that pain points away from als but I also have been told that trouble holding a pen, cramping pain and difficulty using a limb are cause for concern.

Please do not be angry with me for posting and I reiterate that if you still believe that I should not be here, then I will not post again.

Thank you

 

[Nikki J]

There is clearly something wrong with your arm. It doesn’t sound like ALS still. There are many reasons for things not working properly and your whole presentation does not sound like ALS to us or, more importantly, to your doctors.

Your gp is pursuing other avenues as she has ordered an ultrasound.

WHEN you get a diagnosis please come back and tell us what it was. I am confident it won’t be ALS

Best of luck. I am closing this thread to help you keep your promise