Just a little vent/update....

[Robynnblue]

Hi everyone. Its been maybe 3 months shy of a year, since I posted anything on here about myself. I've have a few friends here and was just having a raw day and felt like saying hello, and venting a little. Many of you know that I was quite the basket case when I first posted here over a year ago. That part is no longer the case. I pretty much went from anxiety head to depressed butt over the past several months. I have had some good days over the past few months, in a sense that I could shower unassisted, ignore the trembling in my legs, do my makeup if I felt like it, walk my boys to the park, and even walk around my neighborhood by myself if I felt froggy Last year, due to severe anxiety I'm sure, I had lost a lot of weight. I started at 115 before I became ill, and had dropped down to a miserable 83 lbs before it was all said and done, but am happy to report that my weight is back up to around 105 give or take a pound. Still not where I was but its still better then I was last year.

Even with the improvements, I am still dealing with my legs feeling funky when I walk, dont know if its not as bad as it was, or if the anxiety coming down makes it feel less awkward, or if I have just started to get used to how they feel and am learning to ignore it. Which ever I still feel it. I still feel what seems to be less dexterity in my right hand, some in left but way more of an issue in my right. If I use a fat pen to write, its not so bad, but if I use a regular size pen or pencil, then my hand writing looks like I'm a 3rd grader writing. Its a very awkward feeling, but I can still squeeze my hubby's fingers hard enough to make him squeal "OUCH" (I like to make him squeal) LOL, so this, I try to ignore as well.

There was one thing that happened just last night, that so far I am struggling to ignore, and I'm hoping I can find a way to, simply because if I dont, I'm afraid it will effect me in a way that will ruin my weight gain process. I was eating a fried egg sandwich with a sausage patty on it last night, before anyone gets mad at me for that, I have many teeth missing in the back of my mouth, due to many pregnancies, and constant ice craving and ice munching. So eating this is often a bit of a challenge for me anyway. But I was eating it and suddenly choked on a bite of it. I dont know if I was just not paying attention, or if I had taken a breath at the wrong time or what, but I was choking or maybe I should say coughing my head off, had tears streaming down my face, and every breath that I could steel to cough again, there would be little pieces of sausage flying out of my throat at my poor hubby who was trying to make sure I was ok, LOL. Its not funny but I felt sorry for the poor guy, LOL. This morning I seem to handle breakfast ok, and drink two of my ensure shakes ok as well (although I have a feeling the shakes wouldnt be an issue anyway).

I would like to just be able to rationalize this indecent and chalk it up to a fluke that happens to everyone on occasion, but my inner demons are trying their hardest to emerge once again. This is where learning all I did becomes my enemy. Anything new that happens to me, my mind automatically goes straight to the ALS symptom check list. which I know is wrong, but is unfortunately is a habit that I'm not sure if I can break yet, but am still working on.

For anyone who is wondering or wants to know, I did have an EMG in my legs only, and had a MRI of my brain and C-spine. No issues were found. Blood work was all good as well. I have had no further testing since all of that last year, and have not seen a doctor or neuro since last year, and really dont care to if I can avoid it, just not a fan anymore.

Thats it, thats my update or my rant. Any comments are welcome or even if you just want to say "HI"


Take Care

Robynn:grin:

 

[wright]

You know full well that choking on a piece of formed food the way you describe it, is not at all a bulbar symptom; you are fully aware that the initial choking problem of someone with ALS is with liquids. Let it go.

Glad to hear you haven't progressed and glad to hear that you have gained-back much of your weight.

Now do your best to relax and enjoy the Summer sun that is coming.

 

[Jellycat]

Hey Robynblue, put als out of your mind again. If you are thinking bulbar issues, well that coughing incident you had would be the norm at EVERY meal and also in between as you try to dry swallow. Sounds like you've built a better life for yourself since last on here. Why not keep on going?

 

[Robynnblue]

Haha Wright, of course you were on here rite when I posted this, LOL, thanks for the words of reason and for the support, you know how much I appreciate it.

Nice to meet you Jellycat, and thank you also for taking the time to respond and for the encouragement.

Best wishes to the both of you.


Robynn

 

[alex scared]

hi robyn good to hear from you again mad to think that its nearly been a year since you first posted . . Not far off that myself . I hope that you are on top of things mate and glad to hear that you regained that weight . Pretty sure the swallowing issue is nothing to worry about . I will pm you soon but gotta dash now cos gotta go play bouncer. . Ah saturday nights in england . . You gotta love em . . Take care and god bless my friend . . Alex

 

[Al]

Hi Robynn. Nice to hear from you. I don't think one choke means much. Take care.

AL.

 

[Robynnblue]

Awwhh Alex, you dont know how jealous that makes me, I bet Saturday nights in England are VERY entertaining:shock: Glad to hear that you are still carrying on with things and sound in good spirits. You are in my thoughts and I will keep an eye open for your PM.

Hi ya AL, thanks for responding, I know that I shouldnt worry over anything that happens once, but of course my anxiety that still lurks under everything, likes to tell me that its the start of something. I refuse to freak out though, I did for a moment when it happened, but am doing my best to think more rationally about it today.

Thanks for the encouragement everyone

Hugs to all

Robynn:-D

 

[Bliz]

Hi,
Despite our previous argues, I am sorry to hear about your issues. I thought you said you had pure BFS and from following your posts on BFS site, I cannot see any complaints there. Why not to ask for support there thene, I am surre percieved swallowing issues etc. were common symptom (at least 2 years ago when I was there).

 

[Robynnblue]

No need for you to be sorry for me Bliz, I'm a far cry from where I was last year, I just have a rough patch every once in a while, but who doesnt. As for you thinking I was pure BFS, I have no idea what you mean by this, and not even sure why you said it. Anyone who reads my history on the BFS board, would see that me, and several others, never did get told by my neuro that I had BFS. Not sure where you are, but here in the US, there are not many neuros that care about BFS, and will not say thats what you have, but will tell you BF, or CFS. I got a ? mark so far.

But I have pretty much come to terms with that, and I have no desire to post much on the BFS board about my own woes. I try to help there with newbies, and thats about it. I have no desire to post and complain about my twitches. I could care less about my twitches, its the other stuff I had going on that bothered me.

Thanks and take care

Robynn

 

[Bliz]

Robynn,thanks for the answer. I just thought, based on what I have read on BFS site, that you just twitch, I had no idea you have other issues. I am from Europe and except for neuromuscular specialists, neurologists here do not know and care about benign fasciculations either. I have been told "BF", nothing more.

 

[Robynnblue]

Bliz, if you go back and read my first or second post on here, you will see that I had way more going on then muscle twitches, I'm not even sure I mentioned my twitching or not, it just wasnt what I was concerned with. I was terribly concerned about my feelings of global weakness and my brisk reflexes and ankle clonus. The twitching is what brought me here to this site though, because back then, it took a while to be approved on the BFS board. Not many there were reporting ankle clonus, so back then I thought that meant that I belonged here more. I was also quite concerned with MS (and still am some days) because whatever hit me, felt like an attack, with all the sensory issues and fatigue, then throw in the clonus, but the neuro insisted if it was an MS attack, I would have not been able to move something, or not feel something, or vision issues, or falling due to balance issues. I had none of those, so when the MRI's were clean, he ruled out MS.

So thats it, thats the recap. Whatever it was, I just pray it doesnt come back for a while or ever:?:

Take care

Robynn

 

[Robynnblue]

I'm very sorry to hear that Notme, neuro limbo can really suck, to say the least.

I'm curious though, do you think there is a difference between hyper-flexia, and brisk reflexes, or are both terms used interchangeably?


I dont know what my reflexes are anymore, I know what they told me last year, but the only person to check them recently was an ER doc, who struck them way harder then my neuro ever did, OUCH, and said they were brisk but said they should be because I'm so thin, he didnt check for the clonus and to be honest, I didnt really want him to, sort of didnt want to know if I still had it or not.

Any way, no I'm rambling.


Take care and thank you for taking the time to talk with me.

Robynn

 

[tammyg]

Don't worry til it is time, everybody chocks once in awhile. You go to take a breath in the middle of eating and the food goes down the wrong tube. Don't let your brain mess with you. Sometimes you read stuff and feel stuff. My vdad passed from Bulbar pasly and I started losing my voice and was freaking out. I went to my E.N.T Dr. All it was , was inflamation in my voice box from a cold I had months before, It was being flared up by acid reflux that I did not even know I had. Think positive, stay strong. Go on and be happy, If it comes out to ,be something wrong deal with it if and when it happens, don't live with this in back of your mind, it will make you more depressed. It could all be over in a matter of seconds, from a car accident, plane crash, heart attack ect.... Leave it in the past and go forward. Remember it is called the present, because everyday is like a gift. Good luck.

 

[Robynnblue]

Hi Tammy, and thanks for your response. I think it may have been just as you described, that I took a breath at the wrong time when getting ready to swallow and things just went down the wrong way. Its easier for me to analyse the situation today then it was when it first happened...but I think that is just the way of things when it comes to a mind that is more prone to anxious type thinking, which I am more than guilty of in the past, but am hard at work to correct these days.


Thanks again to you for your response and compassion.

Please take care


Robynn:-D