Epilogue - Part I - The "Slide"

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Epilogue - Part I - The "Slide"

Postby puggriffey on December 9th, 2005, 9:33 pm

All -

It has been a very dark several months for me, after 8 months or so of really good, progressively improving health (physical and mental).

I am fortunate enough to now live close to the world reknowned Mayo Clinic in Rochester MN. If you have ever been there, it is a truly remarkable place - a world where the best and brightest doctors, ideas, research and perspectives collide. It is also for many a bastion of last hope for a diagnosis, or some sort of miracle saving one from a bad diagnosis. I have never been to a place with more raw emotion - good, bad, hope, fear - all bundled under one roof.

I have now been through two fear-filled, agonizing weeks of evaluation, testing and diagnosis at Mayo, in response to what I can only describe as "a Perfect Storm" of frightening symptoms that descended on me recently. The centerpiece was real weakness, starting in my legs (especially the thighs and hammies, glutes, etc.) - and in one instant my "rock" of reassurance (twitches but NOT weakness is OK) crumbled on me.

I am now at a point where I MUST sign off from this site for good - not because I want to - I love the people, hope, comraderie, etc on here. But because I need to - I have a real illness that I MUST deal with now, and aggressively. At the end of this series of postings, I will offer up my diagnosis from three world reknowned Dr's at the Mayo. In the meantime, though, I wanted to leave this board with one last, complete, medical look at what BFS os, and can become. I truly believe if I can make it through this last few weeks/months, we ALL on here are in good, hopeful shape.

The last few months started a real, physical "slide" for me. The symptoms included:

* July - a rash - started in hands, then quickly covering my entire body. Little nodules in clusters - white at first, then turning red. Itchy.

* August - painful, stiff neck. Also, a slow, rhymic pulsing "twitch" on the outside of my left hand (under the pinky) that threw me into my first "relapse". Some on here were kind enough to tell me this was a spasm of some sort that is named and common/harmless. Still, I was concerned.

*August/September - neck stiffness turns to "weakness" - head feels heavy and hard to hold up. Also, feet are now twitching and cramping - a new symptom that had never really bothered me before. The calves are now going non-stop too, and "crampiness" is setting in, though no full blown cramps. The twitching in my right foot is bending my outer three toes down periodically. I start Klonopin regularly for better sleep which is now interrupted. This helps the anxiety, but brings on (eventually) the all-too-familiar myoconic jerks at bedtime. I'm familiar with those, and they don't panic me.

* September - neck off and on. I get a cold, accompanied by pink eye, which I've never had ever. And my first case goes away for a day, and then returns. Doctors think it's viral, not bacterial. The cold is weird - only chest congestion, and not a lot, then a real sore throat. At first, I feel functional, then one day I am hit like a ton of bricks. This of course sets off unli9mited twitches everywhere - some are REAL boomers that my GP can see through my pant leg. He turns ashen (he's young - lol) and tells me to go see my neuro. Ironically, he's not as concerned with the crampiness and "weakness" - the new things that are swallowing me into my panic.

* October - my legs are Jell-O now, and I am constantly fatigued all day. At some point, I am now convinced I am the first board member here to be twitching then ***. Maybe my first 16 months were just coincindence and really BFS, and then I subsequently got *** now. I plea on here for help, and of course so many on here respond with encouragement - so helpful (honestly - every little bit made a huge difference)

* October 20th - I am in with my new neuro up here in Minneapolis. Verry experienced, vry well versed in motor neuron disease. After a lengthy and thorough exam, and an hour of talking through my symptoms in detail (yes, appointments at this clinic are 90 minutes long!), she states convincingly I do not have *** or MS. I am skeptical and express this in no uncertain terms. I DID have a recent routine follow-up EMG with my old doctor, YES> But this new weakness and fatigueability had not set in, and my situation was growing dire. I felt awful - weak, twitching like nothing else, unstable, eroding - and she agreed we should do a thorough EMG by their technicians to make sure.

* - November (first week) - I am really scared now. My neck is out of control weak. It's hard to keep upright, and when I do, my muscles in back will easily cramp/spasm. It's like I am overworking them. This of course is all overshadowed by how I feel though. Shaky, lethargic, libido is shot, sweaty, hot then cold, etc. I'm not well.

EMG is performed. Much more deliberate and thorough then my previous ones. The needle moves around a lot. (note: for those worried about the quality of their EMG - there were still only 3-4 probes in each limb, and only left limbs and back/neck were done - you do NOT need a thousand probes to tell the tale). I am SO twitchy, I KNOW fasics will show up this time, a first for me.

EMG normal. NCS normal. No fascis, fibs, sharp waves noted. Patients had two sporadic muscle twitches in tested muscle that were absent any diagnostic relevance, and no unusual eletrical activity noted.

I am a free man - escaping my death sentence. Neuro begins discussing stress, anxiety, depression and fatigue. I listen. I do not twitch for two days after, as unbelievable as it sounds.

*mid/late November - relief from *** scare does not bring relief from symptoms. I am still concerned - very concerned. Weakness is amazing - I labor up stairs, I am exhausted after a trip around the mall. I cannot help at home, I struggle to work. I am fading.

* November 21 - I end up in the ER at Mayo (ST. Mary's Hospital at Mayo actually) I really believe I am seriously ill, and need specialized care. I am sweating profusely, have no appetite, am so shaky, cannot exercise at all, and am now frightened by ALS again, as I read stories of people having trouble holding their head up and reacxhing exhaustion. Mayo ER runs extensive blood tests, and performs routine neuro exam. Everything - electrolytes, sugar, red cells, white cells, sed rate, CK - everything - normal. Thankfully, ER doc refers me into Mayo internal medicine in 7 days for a full diagnostiic work-up.

To all reading this - newbies, vets, scared, at peace...let me assure you. I had everything you could think of...slurring speech, weakness, cramping, twitching, fatigue, etc. I now look back on so many posts on here, including my own, that focus in on one unusual symptom - usually something very subtle and small (though it never seems like it), and the panic it induces. Trust me, when your symptoms become serious, they are no longer subtle, and do not leave you feeling "fine, except for this ... which has me freaked out". You would know. So, if you are reading this, and in the midst of a panic or ongoing concern because your foot is always twitching, or your calf is non-stop and seems like the "fine" *** type twitches ("but I can still walk, run, etc."), stop right now. STOP IT NOW. This vet can tell you - it can get, and WILL, a LOT worse if you allow this cycle of mental anguish and "what if" thinking to grow unchecked.

I will continue my epilogue in additional posts to prevent one from getting too long...

To be continued...

JG
Last edited by puggriffey on December 10th, 2005, 4:05 pm, edited 1 time in total.
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Postby lynxminx on December 9th, 2005, 9:52 pm

I'm sorry about your ordeal, but, in fact, most of the people here will get better, even if you won't.

It isn't fair to come here and try to make everyone else as miserable as you're feeling right now. Save the dramatic cliffhangers for a less stressed-out crowd.
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Postby JodiD on December 9th, 2005, 10:10 pm

Wow, what an ordeal. I'm so sorry about all that you have had to go through. Thanks for being willing to share your story with us. I really appreciate your honesty and candidness, and I'm dying to find out how it all turns out. Please ignore the nay-sayers. If they don't want to read it, they don't have to. There are many of us who truly want to.

I hope that you are doing better and will be okay, and I'm sorry that you won't be staying with us.

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Postby Johnny on December 9th, 2005, 10:39 pm

Total cliffhanger JG. I hope you're OK and I can't wait to read more.

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Postby smnbfstoo on December 9th, 2005, 10:43 pm

I am hanging on the cliff.....please let us know what happened, and I certainly hope your are OK and don't want to see you leave the Board, but know you have to do what you have to do. Please post again and let us know the outcome. Thinking of you......
Sharon
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Postby dave y on December 9th, 2005, 10:53 pm

JG, I had all those symptoms including difficulty keeping my head up, difficulty sustaining a smile, terrible exhaustion, and even to this day occasional difficulty talking, chewing etc. Exercise would make me sick for days. CFS dx but that wasn't the real cause I don't think. I couldn't work for several months and almost lost my job. I was a disaster, a mess.

Mine was a viral infection (EBV) followed by hypo pituitary problems. I highly recommend seeing a very good endocrinologist. As long as you don't have visible atrophy, this could very well be a systemic endocrine problem like I have. Make sure to have every thyroid, testosterone and other endocrine test in the book done. Slurring or slow speech, for one example, can be a symptom of both low testosterone and hypothyroidism. Twitching is known to be caused by thyroid problems, and my neuro still thinks that may be behind mine depsite replacement therapy.

I don't know, I'm not a doctor, but your problem still doesn't sound like ALS to me. From what I have read, ALS usually doesn't start dramatically like that (unless perhaps it's bulbar), but does progress rapidly.

Don't name your epilogue just yet, it may prove to be a prologue.
Last edited by dave y on December 10th, 2005, 5:04 am, edited 1 time in total.
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Postby Mark S on December 9th, 2005, 11:05 pm

Wow,

That was like a novel or something. Great writing. The suspense is killing me now. I look forward to the end of your tale. Presumably it does not end in death since you will be writing more though if we don't hear from you then we know the outcome was fatal.

Also, I completely disagree with your last statement that everyone will get worse. This is not supported in the case histories of this board nor in any scientific findings. So if you read that and worried everyone - remain calm because it is founded in dramatic error.

I also admit that I or another person here may have a serious condition that will manifest eventually but this is not to befall everyone.

Mark

:shock: :shock: :shock: :shock:
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Postby Alien Host on December 9th, 2005, 11:12 pm

JG
You sound really freaked out, scared and irrational.
I have been there, I really believe that once again you will be cleared of any death sentence and you will take back control. From what I gather reading about you symptoms it sounds like an autoimmune disorder and there are many many of them and not all are detectable by our premative abilities.

Do you have eczema, anxiety, allergies, psoriasis, diabetes, anxiety, root canals, sinus problems, anxiety, use chemicals in work, poor diet, anxiety, drink caffine, diet drinks or anxiety?
there is an answer out there.....there is a solution.... it is true.....


I feel for you and can only offer you my prayers and best wishes, you are in no condition to be using this forum right now though.. Please,please please, take a break from the internet, it's so damaging to yout mind...

all the best to you and family...

Doug
BFS Is A Mind Trip, It will scare You But Will Not Hurt You

Twitching since 10 2004 with a Dirty EMG, what's your excuse?

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Postby Mark S on December 9th, 2005, 11:22 pm

Doug,

How can we get promoted? Selfless giver of time is growing old. I feel like I am earning my black belt again. The waiting was tough beyond the physical skills. Oh well...the first last and the last first :wink:

ps - I don't really care about my rank but it's fun to write about the last few days.


8)

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Postby Alien Host on December 9th, 2005, 11:34 pm

Mark
I agree.. this is getting old...
I guess we could either make like 200 posts with no text, or pay Basso to write some fill and post it for us...
What is it we bocome next anyway?.. I still havent gotten my "Selfless Giver of Time" uniform yet.. I look for the UPS man to bring it soon I hope..

Heee Hee...

Doug
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Postby basso on December 10th, 2005, 12:08 am

As a true and bona-fide saint I understand your impatience at wanting to be promoted. However, it is in the waiting where the importance lies. Sainthood is not achieved, nor sought but rather it comes of it's own accord.

Now to Pug:
Listen man, you are unhappy and your post is a cry for help. You were up a few months ago, and now you are very down. This sounds like classic depression to me. You have found the road to follow that allows your suffering to continue unabated. This has nothing to do with ALS, MS and is a disservice to people who are really suffering from the deadly affects of these diseases. Why is this?

You must really ask yourself why a person who has been pronounced well countless times, cannot, will not, must not believe it! You have an important voice and yet you are letting it be silenced by the unreasonableness of your fear. You fear because you fear not fearing. As I have stated many times, a person healing does not begin with the neuro, or a test but from inside the person themselves.

Do not post your epilogue, or the end of this story. The above story has ended. Post again when you have the real news, not about the test result but about puggriffey, special and valued pug, speaking from his inner voice. There is within you a well-spring of healing power, a wealth of knowledge of the universe. Find it, allow it to infiltrate all of you.

Every little kid wants to be famous and when we get older and have not achieve our fame we tell people how rich we are, how sick we are, how much we can drink, helk, anything just so that we might be noticed, be different. You are noticed, not because you are filled with disease, or disharmony but because you are a wonderful person.

Roll yourself a great big doobie filled with laughter and love and smoke it right down to the roach. Then come back and post what a fool you have been, but how that is okay and when you look back on it, kind of funny. I will not allow you to have ALS when you do not, your ailment is a physical manifestation from an inner hurt. We have now applied a band aid to your boo boo, let your own incredible power, which is life itself, do the rest. Be remarkable, be worthy of the life which you have, be a champion for this cause. This is the miracle that all the religions talk of, this is the intangible that can not be explained but is the only real thing, the only lasting thing, the only thing that matters.

With Love,
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