Concussion or..? (Warning: looong!)

[Ostemad]

Hello everyone in here.

First off I want to say that I have been lurking on here for a couple of weeks, and the courage I have seen from people here is beyond anything I would have expected from people in such difficult situations - all you who suffer from ALS or MNDs and all of you who have lost loved ones, but continues to create awareness and share information to all of us that has gone unaware of the cruelty of this disease - you are all heroes!

As written I have been following this site for a couple weeks, like a lot of other people who are trying to selfdiagnose through the internet - which, I know, is a terrible idea. I am writing to you just to get a response as I currently have two months to the next neurological examination, and I just need some form of communication about this.

So I'm going to tell you about my last one-and-half-year and I just hope to get your inputs as I want to learn about whatever is wrong with me and in the worst case scenario start to accept the fact that it could be ALS or another MND. Now, I have read the sticky thread (several times!), so I just want to mention that my initial symptoms were "feelings" which according to the sticky not are indicative of ALS. However, my later symptoms seem to be.

Get ready for a wall of text:
I am a 29-year-old healthy male that last summer, a couple of weeks after what I later realised had been a pretty bad concussion, one day felt an "increased awareness"/"feeling of weakness" in my right arm, hand, right upper thigh (approx. vastus lateralis) and around the sphere of my right eye. I was recommended to go to a hospital and get it checked.

Two days before this I've had a tingling/sleeping feeling in the 4th and 5th toes and fingers, so I complied. At the hospital, they did the initial testing of reflexes, etc. where they thankfully didn't find anything abnormal worth mentioning. They wanted to take an lumbar puncture, but decided against it at the last minute. The doctors vaguely suggested that I might have been overthinking my body's signals. I think they tried to imply anxiety, but didn't mention it.

Three weeks after this I am rushed to the hospital as I have had respiratory issues out of nowhere one night. They keep me at the hospital a few hours, whilst monitoring my heart and grab a few bloodsamples. At 4 in the morning I am sent home with nothing of note, except confusion.

A month later (August '16) I get an infected wound out of nowhere on the back of my thigh (can't remember which leg) - A bit weird considering my age and good health. Anyway, I get antibiotics and it disappears within 10 days or so. (I know this is not important, but I think it should be mentioned in case someone else goes through something similar.) I am given a CT- and a MRI-scan of my head and spine within the next couple of months and I'm told they find nothing of importance.

Meanwhile my personal doctor has suggested that I might suffer from stress and anxiety, and that could be the reason for my troubles. I am then sent for psychiatric evaluation, but again I leave not much the wiser, with one of the lowest scores possible in their test. My doctor is surprised, but we agree that I should start seeing a psychologist.

In January '17 I fall off my bike and my head gets a slight bump. The next day I wake up with all the symptoms from the previous summer back on a 100% and I even have a "spot of light" in one eye, which means I'm basically 50% blinded. Having had a couple of migrains previously in my life this doesn't really terrify me and I go to work as usual. For some odd reason, it's not until here that I remember that I've hit my head quite bad way back in the summer (just before this Tolkien-esque memoir started). However, later on that day I have to go to the hospital as a slight headache kicks in. And it stays..

for the next 2 months basically. I am working on/off while having all the classic symptoms of a concussion. Ultimately, in March I have to call in sick for the month. I have been seeing my doctor meanwhile and he still sticks to anxiety, but agrees that I might have a concussion - which considering how sick I felt then, a "might" is not very satisfactory. He is, however, also worried about the amount of stress my job seem to cause me, and actually by the beginning of April I decide to quit. I manage to quickly find a "no responsibility"-kind-of-job and ultimately decide to start school after the summer.

Around March/April I'm pretty sure fasciculations in my thigh has started appearing randomly, but my doctor says it's because of the infection I had 6 months earlier. Anyway, I have now followed my doctors orders on anxiety, by seeing a psykiatrist (the test), a psychologist (regularly) and I have even quitted my stressful job.

Alas, the feeling in my right limbs and head have become somewhat chronic. They are always there, some days a little less, some days a lot, but never gone. It's now more of a feeling of being fatigued - like after a workout, sort of acidy. But my stamina seems to be the same, it just burns from the start basically. But I have not been able to see a clinical weakness, and I don't think the neurologist I finally visited last week have either.

Fasciculations are now in my entire body, about 60% of them in the right side. I don't remember a transition period with them where they spread out from my leg, but I never payed them much attention anyway. The feeling in my right side have recently expanded though and it now includes my right buttock. And only a week or so after its spreaded I start noticing a little less cushion when I sit - even on cushioned seats. So now my inner alarm goes off - because could that mean atrophy? Putting a hand on each buttock I do feel like the right one is smaller and less firm.

Now I all of sudden remember that my right foot and hand always get really sore after walking/writing more than 30 min - with my foot it's something that I just thought was heel spur, but it's no longer just my heel that hurts but my entire footpad, and it's been like that for months, where I haven't given it much thought. And the arc in my new Nike sneakers feels wrong on the right foot, as well. Shiiit - is this atrophy as well?? I can't help myself..

I forget to tell my neurologist about the lack of cushion in my buttock, which I really regret now. But just yesterday I had high hopes again when I learnt that a "chunk" in the throat/sore throat accompanied by unfelt fasciculations in the tongue is a first symptom.

So even though I've had a feeling of being unable to clear my throat for a month now, at least I didn't have fasciculations in my tongue. But, lo and behold, I walk confidently to the mirror, just to see my tongue jumping around both when resting and when out of my mouth.

My GF suffers from MS, so that or something similar I would have been able to grasp. But this.. this is too much..

Needles to say I am pretty worked up now. But if you haven't fallen asleep just yet, then any input, recognition or comment on my tale so far, would be much, much appreciated.

//Sincerely

 

[Vincent]

Please read the Read Before Posting sticky at the top of the Do I Have ALS? forum. That should answer your questions. Our basic position is no weakness no ALS. It's kind of like having cancer without a tumor.
Vincent

 

[Atsugi]

Never knew anyone to name himself a piece of cheese.

Always happy to see a Dane come by. Love your country. I went there to see the Tollund Man years ago.

Good news on the ALS front. There isn't any. Not a word you wrote has anything to do with ALS. I don't know what the problem is, but it's never going to be ALS.

 

[Ostemad]

Hi Vincent,

Thanks for your reply. I have come to understand that there's a difference between what they call ALS in Europe and what they call ALS in the English-speaking countries. Apparently, ALS is the umbrella-term in Europe, like MND is in the English/American countries. So I see why you're looking for foot drop and weakness, as a primary symptom.

Again, thanks for your comment - it's lovely to talk about it instead of being in my own head so much:razz:

 

[Ostemad]

Hi there Aviator Atsugi!

Haha, well spotted! One should never avoid naming themselves after the delicacy that is cheese!
Glad you decided to come by and even happier you liked it. It's still pretty good here in DK, even though big finances are leaving their marks here as well, but I guess that's all over the world. If only everyone on here got as much scientific attention as that old Tollund fellow I do have plans to go see some gators myself in sunny Florida, once this mess is hopefully over.

As I wrote to Vincent there's apparently different definitions of ALS depending geography, so from an American perspective you are very much right. Unfortunately, from all the Danish descriptions the only symptom I am not showing is weakness, which is also a latter one. So I feel quite down about this, and I can't stop speculating, like so many other anxiety-ridden people here. But I want to thank you for taking the time to reply to me - it's very, very nice of you and it helps a lot!

 

[lgelb]

MND as an umbrella category of diseases that includes ALS does not have a fundamentally different definition in Denmark, so when we say you aren't describing it, that goes anywhere.

You could certainly have a post-concussion syndrome, and so I would see a specialist in traumatic brain injury, who can suggest physio, occupational therapy and/or drugs that might alleviate your symptoms while [hopefully] more healing takes place. These specialists are most often found in urban areas where there are more accidents and incidents.

Diet, sleep and stress all can play a role as well, and since your GF has MS, you probably have some areas that could be improved.

The good news is that you don't belong here. Take a moment and reflect on that, because it's really good news, as everyone here will attest.

Best,
Laurie