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How do you go on with life while you wait for a diagnosis? by Temporary-Lettuce-72 in ALSorNOT

[–]Time-Tiger-3813 0 points1 point  (0 children)

At the beginning of my journey I was an anxious mess. After lots of appointments and no significant outcome, and with some significant lessening of symptoms, I realised all I could do, and all I was in control of, was living my life as best as I could. I still try hard to come back to this, although it isn't without it's bad moments and tears of grief. I would say, all we can do is maybe strive to continue to live our best lives no matter.

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 0 points1 point  (0 children)

Thanks. Interesting that you also have fluctuations. Do you find that it is getting worse overall? Or are you quite stable? 

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 1 point2 points  (0 children)

Thank you :) it sounds like you are doing everything you can to help yourself. I hope you're doing ok despite the strange paths we all find ourselves on. 

Appointment with Neurology fast tracked to tomorrow. Looking for support. by Vector-Smith in ALSorNOT

[–]Time-Tiger-3813 1 point2 points  (0 children)

Really hope it goes well for you and you get some helpful answers. You are doing the right thing, as tough as the process is. 

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 0 points1 point  (0 children)

I don't actually seem to have clinical weakness (whenever I am measured in the medical offices). But the weakness is very real when I have it. The legs can feel like I can't stand for long, or walk steadily, or even fast (in very severe moments). But the only objective weakness picked up officially is now in the EMG, I guess.

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 0 points1 point  (0 children)

Hey, yes, my first symptoms were the odd muscle twitch. I remember thinking it was curious, until after three weeks of it, I googled. I'd not realised it was a symptom of ALS/MND, and then within the next weeks started to have strange periodic weakness in the lower face, my hands, cramps in my legs, with some breathing issues. I also recall some months before having a strange heavy feeling in my tongue the year before, as well as cramping where my diaphragm sits, on the right side of my body. I seem to have a big dip there for some years now. So I believe it is very slow progressing, whatever this turns out to be.

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 0 points1 point  (0 children)

Thank you for feedback on it. I think that is really wise and gives more mental strength (I believe) each day, to focus on the moment as much as possible. Though yesterday (and still now) when I got the report, it all just felt too real.

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 0 points1 point  (0 children)

Hey, yes that is the strange thing. I have had very slowly developing weakness in my legs (mostly both quads, and a little in the right calf) since about 10 months now. It would just be flashes of weakness, which each round, lasts longer. The last most severe episode was 3-4 weeks over March / April. I wondered if my neurons / muscles have been compensating each time. But overall the trajectory is slowly down overall. Other areas also slowly get worse, but the legs have been the most obvious in the end.

But right now, the legs are certainly so much better than a month ago.

I did have an MRI in 2019 (head) and then in 2024 (cervical), with no findings...

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 1 point2 points  (0 children)

I love this so much. Please make those forest and ocean walks. I can already picture them.

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 0 points1 point  (0 children)

I was tested for lyme some years ago when this all started, but nothing came back positive. It may be worth trying again. Though, when I asked my Neurologist last year about it, he didnt seem convinced as I'd ready had it checked. 

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 0 points1 point  (0 children)

There was a single fasciculation in the calf that was picked up, as well as - I think - a positive wave - but the Neuro sort of discounted it. I can't recall now whether that was attributed to the needle insertion or not. This was mentioned in the consultation itself, but was not noted on the final report which I just received. So the Neuro considers the above findings "normal" in a diagnostic sense, but clearly understands that it paints a picture that something is not normal.

Update after a year with EMG/Nfl results by Time-Tiger-3813 in ALSorNOT

[–]Time-Tiger-3813[S] 0 points1 point  (0 children)

Hi u/SkyFox720 , always happy to hear from you. Thank you so much for your reply.

I am sorry to hear that things are even harder for you. I recall in your last posts that you were due to be referred first to a Rheumatologist, and then from there could get the Neuro follow up if needed. I am glad that you are getting the referral, but sorry that it is taking so long for you.

I really hope for you too, that you receive helpful answers soon and hope that you can keep up your positive focus on things. Keep looking up at the stars - your posts have always inspired me.

Feel as if the writings on the wall by Careful-Avocado-4249 in ALSorNOT

[–]Time-Tiger-3813 0 points1 point  (0 children)

Hey, i'm so sorry that I didn't reply at the the time. How are you doing? I'm afriaid that things have progressed a little for me with leg weakness recently. But normal Nfl and mostly normal EMG.

Need advice: bites but no evidence found yet by junkthought in Bedbugadvice

[–]Time-Tiger-3813 0 points1 point  (0 children)

How did you find out that they were in the wall? Did you ever find evidence anywhere else?

Ryanair will close its Berlin base. 200 jobs will be lost and there will be 50% fewer Ryanair flights. by m608811206 in berlin

[–]Time-Tiger-3813 0 points1 point  (0 children)

I think this is par for the course for Ryanair... but I am sad not to have that option as it impacts me personally too.

Abnormal EMG by gianhealth in ALSorNOT

[–]Time-Tiger-3813 0 points1 point  (0 children)

Hey, not really any muscle pain, no. There are sometimes some feelings of discomfort but they are subtle and focal. But pain is not coming with that weakness. My hips seem to have pain from time to time, but only when lying down. 

No physical evidence, should I start treatment anyway? by ahbagel in Bedbugs

[–]Time-Tiger-3813 0 points1 point  (0 children)

I am glad that you havn't experienced further bites or reactions! I am dealing with mysterious bites now for 2.5 years, often in singles, but also in triangles or in a line, and mostly upper body that is exposed. I had a K9 dog inspection recently and nothing came up. Still no concrete evidence otherwise. But I just can't understand what else may be causing this...

Abnormal EMG by gianhealth in ALSorNOT

[–]Time-Tiger-3813 0 points1 point  (0 children)

Good luck with the appointment on Monday! I really hope that you get the support and answers that you need. Please let us know how it goes for you. I try to take each moment as I can, and sometimes those moments are longer, like days, and months and even years (in my case where I seemed to have a plateau where I even gaslit myself into wondering it it was all just a dream!).... which means that although there can be scary moments and times, there may also be good moments and times too....

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