Please Help Me With Your Insight

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Please Help Me With Your Insight

Postby Niki6 on October 18th, 2012, 12:22 pm

Hi Everyone
I haven't been diagnosed with BFS in fact no Dr has even mentioned It to me. I have been freaking out for about 6/8 weeks now and am lising any glimmer of the happy person I used to be before this all started. Of course I'm sure you can guess I have already convinced myself I have Als. I made the mistake of googling 24/7 and have read day after day consumed with the facts and how this dreaded disease usually presents but of course I'm dwelling on the few stories that weren't the norm progression of als.
My symptoms have been jumping aro'und but they first stared as feeling weak limbs a few times a week that went to a few times a day and was constant for about two weeks straight. I get terrible pain in my hands shoulders and back. The weak feeling is mostly in my hands and arms. I feel like Iam clumsy losing dexterity and have to grasp things a few times before I can actually grasp it. I sometimes drop things and the pain and stiffness is unnerving. This still comes and goes but it is settling for now in just my right hand. I have been getting twitches all over. Not a lot at once but ill have one in my arm then my thigh then my hynie :) and they just jump around like that through out the day.The last few days my legs feel weak and my knee gave out once or twice. I feel like my limbs are jelly at times. I also get feelings I can't explain....maybe like electric would feel running through your limbs. I wake up every half hour at night and when I try to get up limbs feel like they weigh 100 lbs each. I could go on for an hour about the weird sensations I've been getting.
I feel like I'm going crazy...crying all the time feeling sick to my stomach. I don't know what to do. Ivehad a bunch of bloodwork and I have been battling mono on and off for 8 months. A little anemia showed up as well but everything else normal. Clean spine and brain mris a good VERY short strenght test w a neuro. He hasn't even mentioned an Emg yet. I go back at the end of the month. In the mean time I probabally will end up in an
insane asylum for how crazy I feel I'm going. I don't really know what I'm looking for
here....some kind of comfort I suppose. I hope everyone is feeling good and having a more clear mind then mine. Thank you to anyone who takes the time to read this.
Niki
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Beer is good.
People are crazy.
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Re: Please Help Me With Your Insight

Postby MarioMangler on October 18th, 2012, 12:44 pm

I am guessing that "I have been battling mono on and off for 8 months" is the key here. Mono completely sucks and that is just sort of what happens in mono, you feel tired all the time. Plus a lot of people think that BFS is just post viral residue anyway. I am guessing that once the mono goes away your BFS stuff will get better. They are more than likely related to one another.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Please Help Me With Your Insight

Postby Niki6 on October 18th, 2012, 3:20 pm

Hey MarioMangler
I did test positive for mono between 6 & 8 months ago...had to get follow up bloodwork every few weeks and it went away but about 6 weeks ago when this weakness started I had bloodwork again and the mono was back activley. I was just told mono caused general fatigue not the kind of weakness my body has been feeling. I'm going back to the neuro for a follow up and I am going to request an emg but I'm terrified of the results. This has been a particularly stressfull year for me in more ways then one....I could start my own reality show of my life this year. Here'sto hoping this is bfs.
Thank you niki
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People are crazy.
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Re: Please Help Me With Your Insight

Postby Niki6 on October 19th, 2012, 6:44 am

Does anyone even think this sounds like bfs? I'm getting afraid that nobody thinks it does for the lack of response :(
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Re: Please Help Me With Your Insight

Postby volfan on October 19th, 2012, 8:04 am

All I can say is that I totally relate to every symptom you describe - down to the limbs feeling like they weigh 100 pounds when you try to get up. The other night I said it is like having one of those dental xray vests on my body holding me down. I won't tell you not to worry because each and every one of us have to tell ourselves that before we can truly start the journey of getting back to a normal state of mind. My journey is still ongoing although most days I stay pretty much (emphasis on pretty much) on the path toward not going nutty. I do jump off a side street from time to time and the view is not a good one. I have a few friends I count on to remind me that the healthy path to sanity is right in front of me and I just need to get right back on it.
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Re: Please Help Me With Your Insight

Postby Niki6 on October 19th, 2012, 8:45 am

Thank you so much for being kind enough to answer me. I have such a hard time describing some of the things that hapoen to me but you are so right on feeling like the xray vest. At first I had a lot more sensory issues and the fact that those are letting up is really freaking me out. I'm strength test and walking up and down the stairs like crazy! Its the heaviness and weakness that get to me the most-- Scary-- My all over twitches dont phase me yet. I'm driving my husband nuts...I don't even recognize myself anymore. Xanax has been my only friend lately lol. Its funny I used to be opposed to it now I couldn't live wo it! I hope today is a GREAT and clear minded day for you
Niki:)
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People are crazy.
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Re: Please Help Me With Your Insight

Postby LApea on October 19th, 2012, 9:54 am

Hi Niki,

Like you have mentioned in another thread,
we have very similar symptoms. Here is a link to my first post on this site. I had a ton of sensory issues, now I have less of the original symptoms I had and now have other random ones.
viewtopic.php?f=3&t=17889&p=133111&sid=b6c86f2c4bd3888b4d306efd997c1157#p133111

I felt so crazy when all of this started to happen, I wanted to punch every doctor who told me it was anxiety I was experiencing. I know my anxiety plays a part, but I also know my symptoms are real and like others on this board.

Give it a little time Niki, you will start to realize just how common your symptoms are here.
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
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Re: Please Help Me With Your Insight

Postby Floydian on October 20th, 2012, 10:32 am

Hi Niki, I also relate to your symptoms you described.
You can read my first post at viewtopic.php?f=2&t=17972&hilit=floydian
I had and sometimes still have strong nerve pains and stiffness in both my arms/shoulders/wrists/hands. Try to hang on and remember you're not the only one.
Stay and think positive. And if you're feelin' down you can always 'pm' or mail me as I can totaly relate to all your symptoms, grtz, Floydian
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Re: Please Help Me With Your Insight

Postby BFSBurger on October 20th, 2012, 6:15 pm

Mono destroyed me. For at least 6 weeks. By 4pm I couldn't even sit upright. I had to lay down and not move. Every day. Weak wasn't even the word for it. So your weakness is expected. Felt like I had a 100lb weight on my back every day. Totally normal.

Honestly I think most of us here wish we had something like "active mono" to point to as an explanation. There's no doubt this is related to that. Mono has a huge impact on your system. For a decent amount of time. But the good news is that when your body develops antibodies, you're good as new.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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