Update; worrisome progression

[concernedman]

Hi guys,

first out I was trying to post in my origin thread but think its closed?
If not please let me know.

Anyway - I wanted to give you an update about my symptoms and how it have progressed, and hopefully some of you will reply with something that is reassuring because I can't let it go even though I have seen a psychologist since many says its can be all in my head.

Unforntulately nothing has been better, only worse.

As you knwo it all started in October -16 with a bit of a back pain and thought I had doing some training wrong. Then it progressed and got worse over time and havent been better since. Mostly in my upper back but the pain is "moving" from upper to lower part during the day.

Then in Jan 17 I got the twitches, I cant recall if it all started body wide at once or if it started somewhere and then spread but what I do know is that it has spread over time and now its all day long in calfs, thighs, hands, elbows, shoulders och back - at the same place on each limb.

Had an EMG done i Nov 17 which was clean except for fascs in my right arm, and did a neuro exam with a neuro who didnt notice anything strange. After that I thought it was time to move on and that it should pass with time and stopped think about it, stopped reading about it etc.. but nothing went better.

Latest month I have noticed that I loss strength in my right arm (dominant), get tired of holding my phone when speaking, brushing teeth etc, simple tasks. I have to paus for rest and then continue.

Together with this I have started waking up at night with sleeping pinky finger and ring-finger and , curled up against my palm. This goes away if I stretch them during the night, this can of course be some trouble with the Ulnar nerve - but that It all comes in this timeline, and progressing? Thats scares me alot. During daytime I have some trouble grip a pencil and to write, feels wierd and looks odd when I hold it. Feels much more like "usual" if Im taking a pen in my left hand?! But dominant hand is my right.

During daytime my pinky and ringfinger is ice-cold and I have shivers only on my right side of my body all day long, even when in bed under the down-blanket!

headache every morning that sometimes goes away during daytime and sometimes not. And the pain in my back/neck is severe.

Dont know what to do anymore since I have;

1 EMG
1 Brain MRI
1 Neck/back MRI
Several blood test (dont know what they have tested but anyway)
Meet the neuro

And it all come back clean, but Im getting weaker, gets more pain in arms, back, elbows and knees. Nausea and weak voice with phlegm and excessive saliva.

Do you have any ideas of what I should do next? Becuase as it is right know.. I cant stand it. Not because Im worried (my anxiety was way more worse in autumn -17), but my body dont respond to anything!

 

[Nikki J]

Go back to the doctor. Pain, sleeping fingers and feeling weak and activity intolerance do not sound like ALS.

Truly we can’t tell you anything more than see a doctor continue to work on your anxiety and make sure you are taking good care with your diet and lifestyle management ( sleep and activity)

 

[concernedman]

Hi Nikki,

Thanks for you reply. I would really like to post a picture of the difference in my fingers when holding a pen. I can write on word, then I have to "re-do" my grip to continue writing, its so hard to explain with words..But I cant move my pinkys much..

I do training, has done all my life - racketball and climbing on a regular basis, and have never before have trouble sleeping, but now I woke up by strange dreams, fingers curling and sleeping.

Now its been 14 months since my first "symptom" and its not getting any better as I said before, only worse. Have any of you heard about this before? Starting with back-pain, the muscle twitching and after that, mild cramps hand upper side of hands, wierd burning pain in arm etc? I do also have the same feeling in my right leg, and my hip och the right side also kinda hurts when Im walking...

Im so greatful for you replys, and I DO listed to you! But Im just having so hard to believe this is just "nothing" and just anxiety.

My best wishes to you all,
BR
Peter

 

[Nikki J]

I did not say it was just anxiety. I don’t know. I do know you are not describing ALS. I told you to see a doctor to get evaluated and to work on the anxiety part Pictures are not going to change our answer

 

[concernedman]

Hi guys,

Anyone else having any ideas?

My Biggest concern is not the twithes, its the combination of it together with the arches, pain, tingling, numbess and shivering and only on my right side of the body - from toe to top. Thats is for me really strange!

I do have a specific question about twitches though - yesterday a sat looking on my left arm just above the elbow and I saw tiny twitches with quite High frequency and I flexed my hole arm (since I been Reading that BFS-twitches stop as soon as you move of flex twithing muscle), but It didnt stop!

And I do read on this forum that tingling numbess and aches points away from ALS but when I Reading on other websites as health-board and spinal-boards its states that this is symptoms of something underlying motor neuron deseace..

And for my EMG - that was normal (except for fascs in one limb) and was performed by a nuero physician so I guess he would have see something if there was. But what I do not understand - if this should be nothing - why the progressive symptoms?

All my bests to all of you, really appreciate that you are taking time to respond!

Hug,
Peter

 

[ShiftKicker]

Nikki has provided you with solid advice. See a doctor. You are not showing a pattern of symptoms that says ALS. I doubt anyone on this forum would contradict her very good advice- this is why no one else has responded. This is not the place to take a survey about your symptoms. Please take the advice Nikki has given you and continue working with your doctors to track down the source of your symptoms.

 

[concernedman]

Hi Nicki and ShiftKicker,

thanks for your very kind answers. Really appreciate it!

So - what youre saying is I shouldn't be worried of ALS even my posted symptoms since the neuro didnt see any reason for concern and my EMG was normal (but not clean)?

All the best,
Peter

 

[Angiegal]

Peter
That is what they are saying.

Angie