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Fell down the stairs...going crazy

PostPosted: February 15th, 2015, 4:19 am
by Xina535
Hi all, I thought I was on the right path by seeing a second orthopedics opinion, another EMG which was clean (in my left arm), seeing two different types of physiotherapists, seeing a new psychologist and trying different meds....

Last night in a hotel room, I couldn't sleep. I had panic all through the night. I thought of my right hand gripping problem and atrophy, my left arm and shoulder (pain/weak), and my left leg, which has been through many weak and pain cycles "supposedly" coming from my back, though nothing was found or accurately diagnosed. Everything has been acting up, feeling weak grip in right hand, left leg and left arm weakness.

Then after this intense night of high anxiety, I went down to breakfast at this hotel and mid-way down the stairs, I fell and tumbled down the rest. Hit my left knee, landed on my right hand which just got done with surgery to remove a ganglion cyst (a cyst, which was supposedly causing my weak grip and atrophy, but I still have all of that), and hit my head on the wall.

My husband was behind me and went to my rescue but of course I could only panic. It was my left leg that either missed the step or something....

He said that it's because the stairs were very steep and curvy (like in a circular structure). He said he thought when he saw the steps "oh man, I hope I don't fall down these..." And then as he thought it, I fell. I am trying to believe this is coincidence, but I've read too many stories....

I can walk on heel and toe, I can go up stairs (though my left leg requires more effort, as it has for a very long time now), I can do anything I try with it, like push my foot strongly against something, etc..)

All of these issues I'm having, there are no real diagnosis! It's hard for me to believe they aren't connected. And now I am scared to walk, scared to walk up or down any steps, because if this happens again, I won't be able to handle. :cry:

Re: Fell down the stairs...going crazy

PostPosted: February 15th, 2015, 4:28 am
by Xina535
Oh and I'm not really twitching anywhere much anymore. I'll get a twitch here and there that last a few secs. I'm getting more of internal vibrations/shakes. Something that had been happening a lot is every few minutes, I'll get a wave of full body tingling, like as if a cold chill came over me, or also comparable to that full body tingly you feel when you panic....the chills. I've been attributing it to anxiety, but it's been happening a lot! Way more than any other time. I also still get the limb jerking, mainly when I come to rest in bed, my leg or arm will just randomly jerk/move one time...changes from body part to body part.

Re: Fell down the stairs...going crazy

PostPosted: February 16th, 2015, 9:19 am
by Xina535
Does anyone have any supporting words!? I am seeing this as my "first fall" and I am just terrified now....again!

I am scared to go down stairs. My left leg is so heavy. I am seeing a good PT therapist tomorrow morning and will tell him to get at it! Work my leg...I need some improvement!

I will show him my right hand and how it's sunken in. My thumb knuckle is very prominent and my snuff box has gotten deeper and deeper. Looks totally different than my left hand. I still can't rinse water out of my hair with this right hand, it just slides down. My husband and parents see this happening but no doctor acknowledges it or has any explanation! One neuro mentioned "shrinking" but was not concerned otherwise. I can't find atrophy like this online, most atrophy I see is of the Thenar or that muscle between the thumb and index finger only, not thumb knuckle/snuff box. I have a dent in that muscle between the thumb and index finger, but it's further down by the V shape and it has not gotten bigger or deeper after many months that I can tell. And my Thenar is the same.

What is up with my left leg and this weird crap happening in my right hand?! It was supposed to get better after the cyst removal.

Re: Fell down the stairs...going crazy

PostPosted: February 16th, 2015, 9:42 am
by Yuliasir
it is so sad to read that you gor this falling and especially that it makes you so deep in trouble.
It really happens sometimes - tripping, missing a stair, falling down. Especially if you do not have normal sleep and are so nervous.

as for getting better after surgery, I must admit it will need time. You have an internal swelling after surgery, so it may get even worse for the first few weeks. Also if the cyst was really compressing your nerve, it may cause some degree of irreversible damage.

You do not have foot drop and still could do all leg strength tests. This measn that your falling was not due to neurological deficite in your leg and your heavy feeling most probably is a result of your fears.

Re: Fell down the stairs...going crazy

PostPosted: February 16th, 2015, 11:19 am
by Xina535
Hi Yuliasir, thank you.

My husband and I agree it should have been him who stumbled (and not get hurt of course), as sad as it sounds, because we know that threw me back into a downward mental cycle. I begged him to come with me down the stairs to do laundry but he gave me tough love "you can do it and won't fall again". So I went and was very careful.

Question: so if people with *** fall, they will have an obvious/measurable/clinical deficit?

I've read that before people with *** fall, they notice they've been walking weird, like me.
I've had many times where my leg was better, but in the last 6 months, I haven't seen improvement with shots or physiotherapy. It's just always heavy, hard muscles, makes me slower...

With my hand, all this swelling is gone, surgery was on 13-Jan. It feels just like it did before with the cyst. Only....could this say something....that I cannot bend my wrist at all yet? My boss and husband think I should be able to by now, but even by pressing on it to go downward, it won't budge. Will mention that tomorrow too.

Re: Fell down the stairs...going crazy

PostPosted: February 16th, 2015, 12:36 pm
by Xina535
I'm also wondering....can *** start like this in the thigh? I don't seem to have foot or calf issues, never cramps or pain there. Most of my twitching when I had it bad was in this thigh (outer side). It's where the hardened and painful muscles are,..,so I assume this is what is weak and causing my weird walking.

Re: Fell down the stairs...going crazy

PostPosted: February 16th, 2015, 5:57 pm
by leaflea
Sometimes fall and just does happen. It happened my husband a few weeks ago. It is happened to me every couple of years for many years. I've also been tripping over rocks. But this is been happening now for many months. When I think about it rationally it is just something that happens sometimes. To everyone.and it is always very upsetting when it happens. I used to get very upset when I would fall down or slipped on the stairs even when I didn't have this fear in mind. So now it is amplified of course. But you would be falling a ant more than one time in all of this time you have had BFS.

Re: Fell down the stairs...going crazy

PostPosted: February 17th, 2015, 12:31 am
by Yuliasir
Xina535 wrote:I'm also wondering....can *** start like this in the thigh? I don't seem to have foot or calf issues, never cramps or pain there. Most of my twitching when I had it bad was in this thigh (outer side). It's where the hardened and painful muscles are,..,so I assume this is what is weak and causing my weird walking.

ALS is a disease of ascending nature whithin the limb, so it starts normally in distal regions (toes/foot or fingers/arm) and then spreads up, not vice versa. Also you have nothing but hardened and painful muscles for well about a year or two, I think, which is really unusual for ALS (it should be already a more or less full limb paralysis, including reflexes loss, contracture, et. etc. with this time frame. On the other hand, lumbar issues, once emerged, are known to last for the rest of life if not treated (and even if treated, it takes a hell of time and treatment compliance to get some relief). So your condition fits lumbar issues perfectly abd does not look like any neurodegenrative disease, to be honets. I must admit lumbar issues are devastating too - it is a lifelong pain, need to be cautious, sometimes surgery etc. etc. etc. But they would not kill for sure.

Re: Fell down the stairs...going crazy

PostPosted: February 17th, 2015, 4:34 am
by Xina535
Thank you!
Yes, it is very logical that I just fell. Probably happened to other people on that stairwell. I haven't fallen at all otherwise. I have tripped on a rug, but just like one time on that day and another time on that day. Like twice a month max. Happens.

I am thankful for the insight about *** starting distally, moving up.That was my understanding.

I was at the neurological center today, to see the physiotherapist. I just broke down and cried. Told him about my fall and concerns about my left leg and right hand. He was able to get the neurologist to see me, who did a compete reflex as strength test on my limbs, no deficits. He saw the bruises, and he and the physio agreed, that when I fell, my reflexes were working perfectly since I was able to catch myself and not seriously injure myself.

Neuro wants me to start taking Fluoxetine. He says it doesn't make me sleepy like the others and should work better for me. He said he couldn't, but he would like to show my strength test to a real *** patient, then I would see that I don't have it. Both agree, by now, if I had this, it would be obvious, in a wheelchair and maybe even close to the end.

About my hand. They both saw the difference between my right and left. Acknowledged the shrinkage. But they said it still looks normal, not like MND atrophy. I told them no EMG was done there yet, so I am getting one next week Wed.. Dr. said though that if it were clinically significant, I wouldn't have normal reflexes and strength.

But of course in my mind I'm thinking, "Yea, but it starts somewhere! It may not be clinically significant YET!"
For the EMG, I am scared as all h*ll!

Something interesting that happened after this: an A-HA moment: the physio took a look at my gait. He saw that I extend my left knee way out and my feet are hyper mobile, where they kinda flop around. He had me try walking with my left foot pointed OUTWARDS instead of it's natural step of kinda of going inwards, as soon as I started doing that, my back pain started poking me, sometimes really bad. He said that my body wanted me to protect my left side from pain, so I've been walking like a zombie and this is what put pressure on those thigh muscles that are hard/made them hard, and made me walk with the inward, step. Over time of doing this, yes, my leg is fatigued. But he said in this mechanical way, not from a deficit. I am so happy about that! I really do believe it because boom, the pain came right away in my back. I am to practice walking like this, but to not over do it if it causes too much pain.

Feel better about my leg a bit. Terrified about my right hand.

Re: Fell down the stairs...going crazy

PostPosted: February 17th, 2015, 8:56 am
by Yuliasir
Oh I was pretty sure your issue is postural, or due to biomechanics. People seldom account for this becasue they think they gait is the same during all the life but specialists are able to see that. This is really a good news becasue this is really reversible - with physiotherapy and maybe orthopedic insoles. I was translating a whole bunch of articles related to the insoles and their effect on the gait and musculature, and sometimes it is really a quality of life difference.

Re: Fell down the stairs...going crazy

PostPosted: February 17th, 2015, 10:50 am
by Xina535
Yuliasir and Leanne,

do either of you (or anyone else) have any input on my hand?

I wrote other posts about it with pics, will see if I can bring them up again....but basically:

Since Feb last year, my grip has been off. Slowly through the year, my thumb joint and anatomical snuff box sank in more and more, and weak grip got worse and worse. There is a dent in the web space which I've been monitoring and comparing in pictures. It does not seem to have gotten deeper, but I am not sure. All I know, this is happening in my right, dominant hand and not in my left at all. The two look different, acknowledged by the doctor today. The ganglion cyst removal was supposed to take care of that, but I have the same problem as before. I don't get twitching in there ALWAYS. If I do, it's a one off here and there, that I can feel. I do feel some other sensations in there, like tingling or vibrating, also not all the time. I can feel the skin is sunken in. Full/normal reflex/strength...even normal gripping strength when I gripped the neuro's hand, but I showed the physiotherapist how my hand grips my hair when I go to rinse water out of my hair, it's off, he saw it, but doesn't know.

What else could this be? Weak grip, atrophy in hand. You know what many websites say and what I am thinking!!!!!!!!! :cry: :cry: :cry:
The EMG - what could it say, if not ***?

Re: Fell down the stairs...going crazy

PostPosted: February 17th, 2015, 11:24 am
by Bibi
I Read about woman Who went to her GP because she had trouble to do things With her hand. GP send her to neurologist Who did EMG and there was anormalities but not chronic damage . She had clonus and later she Got fascikulation widespread. She also devolped athrophy in her hands. She Got The diagnose : suspected ALS. Every 6 months she had EMG which showed The same : acute but not chronic damage . In The 3 . Year she decided to see A rhematologist and she was told that she has artritis in her hands , after that she had A new EMG and it was now BETTER than ever . The neurologist cant explain , but he Said that she Can come back in 3 years. Now she for The first time Can believe that it is not MND and she wished that her GP had send her to The reumatologist at The first time.
I dont know if You Can relate to this , i just want to say that it is not always The worst even that Many symptomes point to that.

Re: Fell down the stairs...going crazy

PostPosted: February 17th, 2015, 11:48 am
by Yuliasir
Xina, obviously you have some problem with rising ther hand up above the shoulder level. Your grip inefficiency exists only in this position, so I would rather think about shoulder nerve bundle issue due to hypermobility of your joints.
The EMG could reveal chronic denervation probably, but ALS is not always a cause. If you have long term compression issies, this wil cause denervation too. But your case seems to be somewhat familiar to me - I mean the fact that gripping strengh is ok but person could not move hand freely over the shoulder level, and I can not remember directly what it was - joint and ligaments issue I think - but definitely not MND.

Re: Fell down the stairs...going crazy

PostPosted: February 21st, 2015, 3:40 pm
by Xina535
OMG!!! Ugh! Today, my leg was almost completely lame. I passed out from panic.

I've been walking with this gait disturbance and been doing what the physiotherapist said with the foot outwards.... and then I realized that made my leg totally act up.....constant tingling, twitching, burning from strain, rest only. I found that stretching helped calm my leg down.

Today, my hubby showed me a new way to stretch my butt muscle. I did 3 reps, and just flat out went straight into full painful stretch. Soon after......I could barely move my leg. It was freaking numb or lame ...both? I had to move it with my hands.

Passed out from panic. Woke up on the couch (hubby put me there), my leg was tingling. Soon after, PAIN started shooting from my lower back down my leg over my butt...tears! Then, when I walked, the feeling was back in my leg, but like 75% and with pain. Took a big ibuprofen. Resting now. The fact that this lameness is gone (for the most part) is what is saving me from a complete nervous breakdown. When it went lame, I swore that was it! That was the day I would last walk. My parents mentioned sciatica issues to me. I does fit the symptom list, I just never knew it could wipe the leg out like this.

I hope it's sciatica issues....due to pure mechanical things and not because muscles are starting to get weak due to *** and then others have to compensate, etc. I am not googling but does anyone know if when people with *** have these kinds of sciatica issues because there is a muscle imbalance, like in the early phases before paralysis?

Re: Fell down the stairs...going crazy

PostPosted: February 21st, 2015, 4:06 pm
by Xina535
Also....the fact my leg came back, even though not fully, this can't be *** right? Or can they fall or go lame, but regain themselves in the beginning?

I am shaking, nauseous, and just beside myself.