Need some wisdom--frightened and without answers

BFS Online Support Group

Moderators: JohnV, Arron, garym

Need some wisdom--frightened and without answers

Postby Nytviolet on July 6th, 2014, 5:49 pm

As some of you may know, I've had Fibro and BFS for 17 years. At the time I had a few neuro visits and MRI, but they found nothing (despite developing neurogenic bladder). But something has been different these past few months. This may not be a good read if you're very anxious, but I'm hoping some folks who are beyond the fearful stage can lend their support and cooler heads prevail. I am 49 (my fascics began at age 32 in the midst of an intense workout regimen. I also had previously (5-6 yrs prior) been dx'd with CFS and an acute EBV infection. Eventually, I've adapted to a slower way of life and pace myself...until about mid-May this year. My fascics have increased greatly, and I'm feeling weakness in my left arm and leg. Like most of us, I test myself by walking on my toes/heels, and I can easily lift a 50 gal water jug or lug around bags of groceries, etc. No foot drop, no problem with coordination or walking, but I'm certain that I'm seeing what appears to be loss of muscle on the inside of my left foot (the area above the arch about 2" away from the ankle). It's also become a twitch hot spot (as I recall, it was also a hit spot when this began 17 years ago). When I'm using my keyboard at work, my finger dexterity is fine, but my arm feels achey, and I get twitching in the left bicep and on the side of my left hand (below pinky finger). My PA ordered an X-ray of c-spine and t-spine, and I get results this week. I'm TERRIFIED that this is just the tip of the iceberg, and I'll spend the next several months in terror awaiting a referral to various specialists (neuro), blood work, and I do not handle stress well. In my mind, I vascilate between periods of thinking everything will work out, and times where I'm certain that MND is starting to develop. I rationalize that it could be nerve excitability from a virus, spinal issues, forinal narrowing, or even an unusual presentation of MS, but my only sensory symptoms are extreme burning on the bôttom of my left foot, and an occasional feeling like a low electrical current running up the back of my left leg. Again, the fascics are widespread from my head to toes, but are worse on the left. PLEASE; I need cooler heads to prevail and help me get a grip as I restart the arduous task of finding a diagnosis. I should mention that I recently had a full CBC / blood panel which was normal except for mildly elevated sugar (102). Any words of wisdom (or hope) would be genuinely appreciated. Hugs to you all.
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: Need some wisdom--frightened and without answers

Postby German2 on July 7th, 2014, 1:07 am

Dear Nytviolet,
I don't belong to the experts in this forums for I am not a veteran and about 20 month "in" with weird symtpoms and 11 and a half month with fasciculations. All I can say is that if you would develop a MND all the medical books about MND would have to be rewritten.
Additionally to our exchange via PN I will add, that I also have a high EBV titer (and a herpes zoster 2 years ago), certain other bacteria, burning hand and feet after an acute infection (from where all get worse) and indeed smaller footarches and muscle decline in hands since this all started. And I am not diagnosed with MND. The infections indicate, that something is going wrong with the immune system.
But I am sure can also get some further reassurance from the veterans...
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Need some wisdom--frightened and without answers

Postby veryworried123 on July 7th, 2014, 1:26 am

I agree

Nothing to worry about

Thanks
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: Need some wisdom--frightened and without answers

Postby Nytviolet on July 7th, 2014, 8:34 am

Thanks again for replying to both of you. No one else wants to and that scares me more. I've never even had an EMG before, so I have nothing to reassure me. My PA couldn't even perform a simple reflex test. I can't take waking up in fear anymore...it's a horrible way to start off.
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: Need some wisdom--frightened and without answers

Postby German2 on July 7th, 2014, 8:51 am

but with time factor you are ruled out completely! I have been to one of the leading als ambulances in Germany. They told me clearly, if you present with only fasciluations and after a maximum of twelve month without weakness there is nothing to worry about any more...
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Need some wisdom--frightened and without answers

Postby garym on July 7th, 2014, 9:11 am

Quite honestly, what you describe sounds a lot like anxiety related issues....have you been dealing with that at all recently? I would start with working on anxiety and move on from there. Adrenaline in the blood stream can really wreak havoc on the body, and can cause a cycling effect. As for your current sxs, they don't sound like what you fear at all to me....you wouldn't visually notice muscle loss in your feet before you noticed the impact of that loss physically. The fact that you are focused on your feet is one of the things that point to anxiety to me.

All that said, if you need to, go see a doc and ask his/her opinion about your feet. Then, when they give you the all clear, believe them.

Hang in there,
gary
garym
Moderator
Moderator
 
Posts: 1888
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Re: Need some wisdom--frightened and without answers

Postby Nytviolet on July 7th, 2014, 1:16 pm

Thanks... I'm so glad u both replied. I seemed ok this morning but as soon as I started stressing at work, the twitching went wild. Now my left leg and left arm feel weak, shaky and just plain awful. I'm scared, but am going forward with doc appt Wrdnesday and hope to get a neuro referral -- I won't be ok until I get an EMG. Please keep me in your thoughts and (if you are a believer) prayers too. Thanks
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: Need some wisdom--frightened and without answers

Postby RobJ on July 7th, 2014, 5:28 pm

I'm 20 years, every few years I have an episode that makes me think, yup, I'm that 1 in a gillion....been twitching for 5 years, 10 years, 15 years, 20 years...then wham! it turns into MND. I'm the one that you read about in those medical books......

It's always the twitch that is new or different, or the cramp that is in a different spot like the inner thigh area, you start looking up medical books for muscles, then search ........... on google (bad)............ for that muscle name and twitch or fasciculations and you come across this study or paper about some patient who twitched / had weakness in that muscle.......more twitching, more cramping..........

Then a few months go bye, maybe even a year or years.....then it's gone...just when you think you've got this figured out...you look at your hands when you are typing and you see real small twitching....this is something I haven't seen before....yup this is it! this is the sign I've been looking for, twitching that is barely visible..this is new....then time goes bye and the twitches go away....

I've been through it all.....I hate switching doctors...because I get nervous trying to explain my past and I twitch like a *beep* and then that starts the process all over again....hate it when the new doctor says....fasciculations...I'm a little concerned, we should send you for a neuro consult.......hmmmmmm....then you go to the neuro consult and they listen, look at you.........and they can't pronounce the word fasciculations.....know what a twitch is..."your whole hand twitches, you whole arm" "that's a concern"....No that's not my concern, my concern are these tiny twitches that drive me crazy............we should do an EMG? how many friggin EMG's do you need? we should do an MRI......and look for what?

Ridiculous!

Listen, if you have weakness be concerned...other than that the doctor can't help you and you've got nothing to worry about. Enjoy life!
RobJ
Senior Member
Senior Member
 
Posts: 86
Joined: February 15th, 2014, 8:48 am

Re: Need some wisdom--frightened and without answers

Postby Nytviolet on July 7th, 2014, 6:54 pm

Hi Rob, Yep... almost 18 years now (come this Fall). I went through the whole MND scare back then (seems like a million years ago). The twitching does not bother me -- it's the weak feeling in my left arm and left leg. I have had twitching in my neck, my arms, legs, buttocks, bottoms of feet (big hot spot there), sides and backs of hands, deltoids, hamstrings, quads -- you name it. I've allowed myself to become "undone" because about two months ago (right after moving to a new desk in my office), I noticed that my left bicep ached and "FELT" weak. On my lunch today, I visited the gym here at work and did 4 sets of curls with no problem, but it's the "weak feeling" that started off this latest fiasco. Same goes for the left leg... no tripping, no falling --- just a weird, shaky feeling which probably means jack s***. Trust me... I realize how ridiculous I sound. When you wrote, "It's always the twitch that is new or different, or the cramp that is in a different spot like the inner thigh area, you start looking up medical books for muscles, then search ........... on google (bad)............ for that muscle name and twitch or fasciculations and you come across this study or paper about some patient who twitched / had weakness in that muscle.......more twitching, more cramping" I had to laugh, because I recall doing just that. Identifying the name of a particular muscle, then looking to see if anyone's MND began with twitching there. Because of the aching (and PERCEIVED weakness), I am starting this whole nightmare over from scratch with a 34 year old P.A. who can't even pronounce the blood pressure medication I'm taking! Wednesday, we will review some x-rays of the cervial and thoracic spine, and then she'll probably order some other inane test. I have NEVER had an EMG and would like to see a neurologist, but you never know how the P.A. is going to react (she's always got the Rx pad ready to cure every ill with a pill, and I don't respect that). We'll see how things go on Wednesday. Let the games commence!
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: Need some wisdom--frightened and without answers

Postby mjd83 on July 13th, 2014, 9:51 pm

When you said it's always that new twitch, or new cramp, I also had to laugh. I freak out also everytime my symptom pattern changed, which for me is about every 2 weeks.

My latest freak out was just like you, noticed a very small twitch on the side of my hand below the pinky, almost need a light to see it. I am also constantly getting feelings of fatique and muscle strain in that hand. And than when I work long hours and find myself slurring my s's and th's and suddenly I'm back on bulbar again!

I'm almost 3 months in and my worry areas seem to change weekly. I go for a follow up with my GP on Wednesday. Last month when I saw him, he did a pretty comprehensive battery of reflex tests and than told me he was 100percent sure I did not have ALS. Even that worried me because it made me feelhe wwasn't taking me seriously.

He told me he was currently seeing 6 patients with MS and had seen ALS in his practice before, and if he had the slightest inkling I might have either, he would already be on the phone with a neurologists. This was the 2nd Dr. And 3rd exam I'd had in 2 months, and I haven't found a GP remotely concerned enough to send me to a neurologists yet.

Just hang in there. I get all kinds of New weird twitches, new cramps, and even some in my toes that are toe contorting. It changes every two weeks and scares the hell out of me but never my Dr.
mjd83
Member
Member
 
Posts: 24
Joined: May 5th, 2014, 10:45 am

Re: Need some wisdom--frightened and without answers

Postby Nytviolet on July 29th, 2014, 6:45 pm

Update: we've changed insurance providers, so I no longer must see a PA and be at her mercy. I'm so exhausted and scared that I can barely work, and she had been running me all over town for routine blood work and an xray of my neck. With new insurance card in hand, I went to see an internist that I trust and respect. He said strength 5/5, but wrote me a referral to a neurologist to help me get some answers, and I have an appointment on Monday 8/4. I'm trying to remain calm, but am prone to health anxiety and that's not a good thing. I can walk on my toes/heels, great coordination in my hands, no speech issues, but my left arm and leg FEEL weak and twitch when I'm working them (cleaning the house, shampooing hair, working on my laptop, washing dishes, and im so very tired -- but anxiety can do that. God help me, I visited Dr. Google and now have myself upset. To the folks on here who ONLY have twitching, I envy you. Twitching by itself means ZILCH. Please keep me in your thoughts and prayers.
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: Need some wisdom--frightened and without answers

Postby Nytviolet on August 1st, 2014, 5:22 pm

Update: had MRI of cervical spine today and so far blood work normal. I'm seeing a neuro this coming Monday and am stressing (so my fatigue and twitching is of course going haywire). Exhausted and headaches make things feel worse. I am praying my reflexes are normal --- that would be a big relief. Hugs
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: Need some wisdom--frightened and without answers

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 5 guests