help with the diagnostic process/symptom progression

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ScotBoy

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Good afternoon All,

Thank you to the Moderators, PALS and CALS for allowing me to ask these questions. This is my first post on the sight although I have been reading a lot of threads since the beginning of Feb when my issues began.

I have read the stickies which were incredible helpful and reassuring at the start while I was self diagnosing myself in between GP/Hospital appointments (stopped me from posting sooner than this) however I feel the progression in my symptoms now fall outside that info and if possible would love some real life responses to them. I fully understand this is not a medical sight and I am in the middle of neurological testing by professionals but I haven't had any results (other than blood and Lyme tests) as yet.

I have been experiencing muscle tightness, cramps and twitching mainly focussed in my right foot, calf and quad, although I have sporadic episodes in all other limbs, throat and torso. Until now I could not state I had muscle weakness. There was some other sensation changes in my hands and feet which as I said after reading the stickies calmed my fears of MND/ALS

The concern I have now is raising my left shoulder has become very laboured, I get to a certain point and it doesn't want to go further, after a few attempts I can eventually get it above my head. After I have had my arm above my head and lower it I get 3 or 4 sudden jerks, also if I have my arm at shoulder level with my elbow bent I have uncontrollable jerks until I move the arm. Is this considered "progression" in terms of ALS/MND and has anyone had similar experiences with issues presenting in different locations

Also I received a phone call from my GP last week asking me to make an appointment to go over my NCS/EMG results. Is this common practice? as everything up to this point has been sent to me in letter form which has got me very concerned and anxious.

From the time I was referred to the Neurologist I have developed anxiety and understand that some of the symptoms are being caused/magnified by this but as symptoms started before the anxiety I don't believe this is the only issue.

Thank you to the people who take the time to read this. Any help will be greatly received
 

Nikki J

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it doesn’t sound typical. However, you are a visit away from receiving results so rather than making us guess, theorize etc go to your appointment.

there could many things on the emg they want to review most of which have nothing to do with ALS. There are also ncs abnormalities and none of those would be ALS. Or maybe everything is fine and they want to discuss next direction.

let us know how the visit goes
 

ScotBoy

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Nikki,

Thank you for your very quick response.

I am a bit away from my appointment but I will certainly update the post when I have had it.

Thank you again for your time
 

ScotBoy

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Hello Nikki,

As I said here is the update after my GP appointment.

I met with my GP yesterday and she briefly discussed my results, although it didn't really answer any questions.

I have not seen the full test results (not that I would understand them anyway) but was told the conclusions. There was a slight sign of conduction block around my right and left wrist but no other signs or conduction blockages or signs of neuropathies.

The twitching in my muscles was picked up on the test and appears to be BFS, it also appears there is no sign of nerve disease (the GP's words not mine)

Not really sure how to interpret the use of the word "appear". Whether that means everything was ok or there was something seen that raised some doubt and they cannot say for certain.

In your experience would it be normal practice for 2nd NCS/EMGs to be ordered if there were doubts from the first exam or something they weren't happy with?

I have been asked to take a MRI which I understand cannot be used to diagnose a MND but is used to rule out other potential causes.

Whatever the reason I'm back in limbo now waiting on more tests and results.

Thank you again for replying and taking the time to read my posts.
 

Nikki J

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the conclusions sound like they saw nothing at all of concern for mnd. At a guess the mri is because they saw no reason for concern so are now looking for other causes of your symptoms. An mri can not diagnose mnd you are right. Sometimes they see something and will write it could be but clinical correlation is necessary. Meaning look at the exam and emg. However you already had the emg

i am sorry your gp didn’t sound definite but given the conclusion you report it sounds as if she was looking at an essentially normal report but not being a specialist did not want to speak definitely. Or it is just a turn of phrase
 

ScotBoy

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Nikki,

Thank you again for your very quick response and input.

There is a certain reassurance when you have the opinion of real people rather than debating the logical and irrational thoughts

Your patience, opinion and time is very appreciated. It really does mean a lot

Thanks
 

ScotBoy

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Hello Nikki,

I am returning to you regarding the diagnosis process to ask your advice on where I can turn to now.

After reading the questions at the end, if you feel this isn't really something you can assist with then please feel free to ignore and concentrate on posts from people who deserve your attention more. No offence would be taken.

As per my last update I have now received my MRI of head, neck and spine and other than some mild disc bulging in my neck and lower back (which isn't compressing any nerves) all was fine.

All symptoms stated in my first post are still present in varying forms but now I experience daily cramps in my right foot and my right shin/ankle muscle is extremely tight constantly. I have also lost some bulk around the arch of my right foot. If required I could attach a photograph but I'm sure you don't really want to be looking at my feet and I'm not sure it would really help

Eventually the questions:

From the experiences of all the people you have helped, do the frequency and severity of cramps and tightness indicate progression and affect an EMG or would it have no bearing on the results based on the fact they were present in a milder form prior to the test if associated with a MND? The same with the changes in appearance in my right foot, although it has started after the test would it have been picked up based on how close it was if a MND was present?

Finally do my array of symptoms described above fit into anything that has appeared in the forum over your 9 years of activity that I can focus on and break the association with my symptoms and MND

As always I am very grateful for your time in reading this post and the help you are offering
 

Nikki J

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In my opinion
no bearing
yes
it doesn’t sound like mnd still to me. Which is supported by your emg. Honestly most people just eventually move on Often things just resolve once you stop worrying. See a post by a returning member on this subforum just posted today

if you are worried still work with your doctor who can see you in person
 
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