'

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

'

Postby PDR on January 13th, 2004, 1:02 pm

a
Last edited by PDR on February 16th, 2004, 1:12 pm, edited 4 times in total.
PDR
Senior Member
Senior Member
 
Posts: 71
Joined: January 12th, 2004, 3:23 pm

Welcome

Postby mstwitch on January 13th, 2004, 2:36 pm

Paul, Hello and welcome to this site. Whew...you have been through a lot. The stress you have been under and the loss you have personally experienced in your recent life pales in comparison with most. I know how you feel to an extent, and I understand your fears. You have had a clean neuro exam. Please try and put your fears to rest and enjoy your life. You saw first hand that a life can be sniffed out in a heartbeat. Give your wife and kids an extra hug each day and tell them you love them. You will be okay. Continue your healthy lifestyle. Some medications to try for the pain are Neurontin or other anti-siezure meds. As for SSRI's--I agree that the side effects are worse than the reason you would be taking them. If depression is an issue, talk to your Dr. about Wellbutrin as that is associated with fewer side effects. Good Luck.
mstwitch
Member
Member
 
Posts: 30
Joined: November 7th, 2003, 9:55 am
Location: Great Lakes Region

Postby PDR on January 13th, 2004, 2:45 pm

a
Last edited by PDR on February 16th, 2004, 12:57 pm, edited 1 time in total.
PDR
Senior Member
Senior Member
 
Posts: 71
Joined: January 12th, 2004, 3:23 pm

Postby SusanSid on January 13th, 2004, 4:53 pm

Paul,
Yes, you have been through a lot. Put ALS out of your mind, you couldn't do the exercising you do, for this long, if you had it. However, not that I'm a doctor, but your anxiety level is what is causing you your most discomfort at the moment. Anxiety can cause the most unbelievable symptoms...I know from experience. The mind is so powerful.

Medication can help, but I understand your fear of it given your experience. SSRI's do differ from one another a bit, but the side effects that some go through when first starting them can be frightening, especially in an alread anxious state. Some doctors will do a combo of a short term period of xanax and a antidepressant to enable the antidepressant to start working while allowing you to relax.

There are also some great books on anxiety. My favorite is by Edmund Bourne and (don't laugh) the series on infomercials, 'Attacking Anxiety and Depression' by Lucinda Bassett through the midwest Center for Stress and Anxiety (it's a combo tapes, books, videos etc). They have a website.

Good luck and keep in touch. It'll get better.
Sue
SusanSid
Selfless giver of time
Selfless giver of time
 
Posts: 172
Joined: August 15th, 2002, 6:01 pm
Location: California Central Coast

Re: New - Paul's Life

Postby eric on January 13th, 2004, 6:30 pm

PDR wrote:OK, here it goes. I've been reading this site since October of 03. Most wonderful I will add. Hats off to you all.

I am a 38 yo white male. I am a Gulf War Veteran, currently working in a Hospital. I have a wonderful wife and two great daughters.

I have had an extreemly "fast" life the past 20 years. Military college and service for 8, profession school, work and family. Not too much different than the rest of America.

In 1999, I got out of the service. Since then, I joined the National Guard.

Now the "stoy begins". In October of 1999 I was playing racquetball with a fellow I just met. We were into the second game and BOOM, he colapsed and died. Very upsetting.

Later in the same year I meet a 33 year old male whose has a daughter in Pre-school with mine. We become good friends. He had a history of Ulcerative Colitis. He passed away June 2001 of Colo-Rectal Cancer.

Another friend of mine, 42 was leaving the gym on day Dec 01 and had a Stroke walking to his car in the parking lot.

A month later my dog of 7 years is killed in a car accident.

Also throw in 9/11 and a few heart palpatations which lead to a stress test that was initially positive. Which lead to another which was repeatable, but the Cardio said it was a False Positive and certain I did not have Coranary Artery Disease. So that led me to an Obsession of loosing nearly 40 LBS.

Dad of 82 years passed away Dec 15 2002.

Now add the fact the Government says Gulf War Vets have an association with ALS. Always in the back of my mind. My Uncle passed away with ALS in 1998.

For the past two years I have been exercising like crazy. Obsessed with my diet and exercise.

Now the past few months.

It all started early October. I woke up that morning to do a 10K race. I had a cramp in my Left Calf. Did the run well, and felt the calf just alittle uncomfortable. During the run I had a palpatation. I was just making mental notes. Finished well.

After the run I ate some BBQ Chicken. Immediately had the "runs". Either is was the Chicken or the fact I just ran 6 miles under 45 minutes.

That week I just didn't feel good. Chalked it up to the run. Had some soreness and things that go along with running. That weekend I Biked 50 miles and felt "fatigued". The next week I got a "tingling" in my left two finger and "tingling" in my left foot. Felt some stomach/GERD like signs. I took some Prilosec.

The following week the [email protected]#$ hit the fan. Mind you, I'm still exercising. I get THE WOST HEADACHE in my life and feel BAD. I call the Doc and see whose on Call. The Doc was not too simpathetic. Called it Migrane like symptoms, return as needed. She did say she didn't not think it was anything BAD.

The next day I feel like a truck hit me. Still tingling and a headache. That evening I had a HUGE Night Sweat and Rigor (very bad shivering). The next day the whole left side of my face is tingling, ear, lips you name it. I tell my wife I think I'm having a stroke. I was working myself into a frenzee. She said she doubted it. As time past my entire face was now Tingling, which made me more comfortable. Stroke hits One side.

That night I had another night sweat only in the legs. The next day I feel the same. And that night another night sweat only in the arms.

Now I have had no fever, no nausea, or diahrea during any of this.

I go to the DOC the next day. He says I'm "OVERTRAINED". I must admit I was exercising very hard the past year, working, coaching football, and being a Dad.

So he orders every Lab on the sheet. You name it, I had it done. MRI of the HEAD, NECK, SPINE ---- all normal. I even did the Serum Lyme - normal. CPK - you name it -- Cortisol ---everything normal.

No Cancer, No MS, No Tumors.......clean........

Next stop Neuro......now the "FASICULATIONS" BEGIN!!!!!!!!!!!

I didn't start to "SEE" the twitches untill after all these tests. These Fasci were new. Now, during the month of October my calves and shines felt funny, but like ALL OF US, I looked up "TINGLING" on the NET and some how ended up on ALS. Then that lead to TWITCHING......

Did all the surfs. Actullay found this site before my Neuro.

EMG Clean....actually he did not even see and Fasci on the test or during the exam. NCS showed some Ulner nerve problems.

Before he even got to the DX I said Benign Fasciculations. He agreed.

I expressed my DEEP concern of ALS due to my Gulf War experience. He said to talk to someone about it, and I did through the VA. The "talking" is great.

Still, I worry about ALS. I have no atrophy or weakness. To tell you the truth, before this all happened in October I was aware of the Gulf War / ALS reports and would at times "compare" thighs/calves, etc. So my obsession of taking measurements and looking for signs began before the Fasciculations.

Now they don't stop. As like most of you 24/7 in the calves. Yes, exercise makes them worse. Yes, I get delayed onset muscle soreness. However, I don't fatigue during exercise. I can play racquettball for 45 minutes with an average heart rate of 160 and Spinn the same.
I do have the, what I call the "popcorn" Fasci. A pop here and a pop there. Glut, shoulder, lat, lip, eyelid, hamstring, stomach, foot, hand....just random pops. But those Calves drive me crazy. I do get Pain. Calves and Thighs. However, it is transient.

This is long.....Treatment--- Sleep, I use Tylenol PM and 5mg Melatonin. Ambein when really bad. Started MG supp. Total 400 once a day for now. Doc gave me Celexa......BAD MOVE......started having Tinnitus 4 day into Treatment....stopped it and the ringing went away. I will not touch a SSRI again. Another Doc gave me Flexerall. Nice, but I exerienced "REBOUND"....this is new and I will experiment with it later. I take no anxiety/anti-depressents.

This sent me into the SAME PANIC as the rest of us. ALS has been on my mind since the Govt published the report about the Gulf War and my Uncle. Now the FASCI and BOOB!!!! Even worse. To the point of Crying and almost non-functional.

Based on what I have read, and believe, I don't have ALS. BUT, there is that little spot in the back of my head that is just lurking.........

My wife and sister and all of you tell me to "DRIVE ON" and live your life. They tell me I'm probably more likely to get hit by a car riding my bike than getting ALS.

Stop Worrying and enjoy your wonderful wife, dauthgers and family as well as friends.

I thank you ALL!!!!!!!!!

PS I tried Doxy 200mg a day for three weeks....nothing.....perhaps I didn't take it long enough? :wink:


paul
200 mgs of doxy is not even close to what you schould be taking. in a low dose the bacteria cannot replicate but they are not killed. also there is speculation that a tick is the vector in the persian gulf. I dont know if it is true or not.
also the test are not accurate, hope everything works out for you.
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby Jenn311 on January 13th, 2004, 10:17 pm

Hey Paul...

I agree with Susan....I think you need to handle your stress and anxiety if you want to get a handle on your twitching. You have been through a lot, and it's understandable if you are a little afraid of dying after what you've witnessed. I know meds are hard to take at first, but if you start at a lower level on perhaps another drug...you may find that in a couple months you are much calmer and happier. Only then will your twitching decrease. When I first started twitching they saved my sanity, though in the beginning the side effects were unbearable. Looking back though...my outlook on life was better than it had ever been! I felt great.

You are lucky to have a supportive family....count your blessings! Time heals all...eventually you will come to grips with your BFS! We will all die one day, so why waste precious time when you could be out there living?

Best O luck to you.....
Jen
User avatar
Jenn311
Saint
Saint
 
Posts: 681
Joined: April 4th, 2003, 3:26 pm
Location: Central Texas

Postby Ray on January 13th, 2004, 10:33 pm

Hey Paul, I know what you mean about Celexa, I too experienced Tinnitus and it scared the c**p out of me, I eventually learned to cope with it but the insomnia sx of it made me give it up also. I switched over to Effexor and it's sx are minimal, in my case anyways. I do experience the ringing in the ears but nothing like before, insomnia is not an issue but I think I'm dealing better with my anxiety which may ahve been the reason for the insomnia initially. The greatest benefit and I know I'm repeating myself here (see my previous posts) is it helps to reduce my pain in the hands and feet which were quite bothersome.

I do not promote the idea of taking SRRI's but it certainly helps me and from what I understand it has helped many others.

Stay in touch,

Ray
Ray
Senior Member
Senior Member
 
Posts: 53
Joined: September 16th, 2003, 9:43 pm
Location: Ontario, Canada. Eh !!!!

Postby PDR on January 14th, 2004, 10:05 am

a
Last edited by PDR on February 16th, 2004, 12:57 pm, edited 1 time in total.
PDR
Senior Member
Senior Member
 
Posts: 71
Joined: January 12th, 2004, 3:23 pm

Postby PDR on January 14th, 2004, 10:09 am

a
Last edited by PDR on February 16th, 2004, 12:58 pm, edited 1 time in total.
PDR
Senior Member
Senior Member
 
Posts: 71
Joined: January 12th, 2004, 3:23 pm

Postby garym on January 14th, 2004, 3:03 pm

Paul,

Neurontin has helped me, both with pain and anxiety. I'm taking 1800 mg/day. It hasn't helped my twitching, but the pain/anxiety benefits have been great.

Good luck,
Gary
garym
Moderator
Moderator
 
Posts: 1888
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Postby PDR on January 15th, 2004, 8:30 am

a
Last edited by PDR on February 16th, 2004, 12:59 pm, edited 1 time in total.
PDR
Senior Member
Senior Member
 
Posts: 71
Joined: January 12th, 2004, 3:23 pm

Postby PDR on January 15th, 2004, 8:35 am

a
Last edited by PDR on February 16th, 2004, 12:59 pm, edited 1 time in total.
PDR
Senior Member
Senior Member
 
Posts: 71
Joined: January 12th, 2004, 3:23 pm

Postby PDR on January 16th, 2004, 4:07 pm

a
Last edited by PDR on February 16th, 2004, 1:00 pm, edited 1 time in total.
PDR
Senior Member
Senior Member
 
Posts: 71
Joined: January 12th, 2004, 3:23 pm

New - Paul's Life

Postby Twitchlots on January 18th, 2004, 10:26 am

Paul...I would persue the Lyme angle a little harder. I have Lyme and mine started out with headaches, severe headaches, then the twitching, tingling and all the stuff that comes with that. Good Luck and keep us posted on what you find out. (Also, I agree with Eric. The amt of doxycycline you are taking will not touch the Lyme bacteria. Sounds like it is in your central nervous system--if so, you need the IV Rocephin treatments.)
Twitchlots
Member
Member
 
Posts: 21
Joined: October 24th, 2003, 9:56 am

Postby PDR on January 19th, 2004, 10:27 am

a
Last edited by PDR on February 16th, 2004, 1:00 pm, edited 1 time in total.
PDR
Senior Member
Senior Member
 
Posts: 71
Joined: January 12th, 2004, 3:23 pm

Sponsor

Sponsor
 

Next

Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 3 guests