Living with ALS: Facing Fears

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EyeoftheWild

Well-known member
Sounds like your fine Tony, sounds like you have bfs...that is all. However, that isn't going to do it, is it? Your doctor told you the same thing as us. Why do you get to be ill and we don't. Why are you the one unlucky bas*tard that is getting als? What are you really afraid of?

Do you feel trapped in your new marriage, is your job awful, are your parents dissappointed in you? Or maybe, you are just really freaking about your body twitching, and those feelings of weakness. The fact is however, no one can help you unless you start shining your own light around first.

Rely on yourself Tony. You can do it. You present here a man of intelligence and sensitivity. These are great qualities and the perfect ones to get over this "worry hump." Instead of self-testing your strength, give yourself a "worry vacation." This means a vacation from fretting, anxiety, thinking, crying, frowning and sighing.

Grab the bull by the horns Tony and start to swing. It is not so ornery as you think. Get your ass in gear today and do it, okay? Don't ask anymore of anyone if you are okay. At least not today. Today is a "worry-free" day, remember? It the first day of your new life as a bfs sufferer. You will accept this new reality and, remarkably, you will realize that life is now sweeter than ever.

The great thing for you is that your bfs is going to go away because you are so young. For us middle-aged people it seems to hang around, but you can expect a full and complete remission of all these aggravating symptome. Isn't that awesome? Yes, it is. :D)

What are you waiting for? Get going, life beckons.

Basso
 
And always look into LYME. Do not take your doctors word that it can't be lyme disease since most doctors are totally ignorant about the subject (no rash does not equal no lyme). Also keep in mind that the tests are very unreliable. You kind of have to look into yourself by first looking at a list of the symptoms (primarily second stage symptoms) and ask yourself if you live in a high lyme area, spend alot of time outside, etc. Look into it.
 
your fine trust your docs...... i also have slightly elevated liver enzymes that came alomg with bfs... my theory on my illness bfs:

liver dysfuction can trigger peripheral nerve hyperexcitabilty. their seems to be a cause and effect between my liver dysfunction and my bfs. a neurologist told me its very possible. you got to think your liver is on of the most important organs in your body. it has over 200 functions filtering toxins and balancing the existance between all organs of the body. maybe some damage in the livers channels can cause a glitch ,,being mild neurological changes. i met so many people on this board with slightly elavated liver enzymes..ALT and AST
 
agonroughrider,

Sorry to hear you are still worried. And I hope your test goes well. Listen to what EyeoftheWild said, it makes allot of sense.

QUOTE: I have been self-testing myself (i.e. fanning my fingers against resistance, walking on heels, toes, heel-toe walk)...I can do all of them.

Please, stop the SELF TESTING!!! It will drive you crazy. You said you can do all of them.

I have read your past posts and replied to a few and I am with you all the way but stop worrying yourself the death. Your doctor said you don’t have *** If you need total piece of mind, see a neuro. Let that doctor tell you that you are ok. Listen, I have been down this road also and when a doctor (any good doctor) tells you are ok and you don’t have *** take it as a win!!! A GP would pick up on weakness and if that doctor thought there was a problem he or she would recommend a specialist. Did your GP do that? No. I wish the A-word wouldn’t even come up sometimes when we are all talking about symptoms. We are dealing with a syndrome so far from that disease that there is no more chance for us to get *** then it is for the general population. Sorry, I know it is not easy but please listen to your doctors and all the great people on this site telling you that you will be ok, because we know you are ok.

BTW- correct me if I am wrong. If the doctor ordered a MRI he or she is NOT looking for *** to my knowledge, that is not the preferred test.

Take care and let us know about your tests, I think you will be fine.

Paul
 
fbander-
You're right. After I wrote that I realized it is an oversimplification. I still think though that most people on this board are not here because they're twitching (could be wrong about that too). To me it seems like most people are here for either anxiety or symptoms in addition to the twitching.
So is it well established that a virus can cause the other "weird stuff" too? In other words what looks like lyme could just be post-viral? That's well established or contorversial?
 
kl,
It is actually very well established that all manner of neurological manifestations can be post-virally induced. It is, however, not well established or at least accepted by the medical community at large that bfs symptoms can be caused by sero-negative lyme.

I've had my Igenex test (a complete waste of $400 of my hard earned nonrefundable money, IMO ) and it was negative. I then received treatment for the alleged lyme disease ( thousands of dollars more, in spite of my negative Igenex result) by two supposed LLMD's and derived absolutely no benefit from treatment. In fact, my symptoms didn't improve or worsen whatsoever. The antibiotics used for lyme can permanently damage the liver, kidneys and other vital organs, not to mention they cause the body to build up a resistance to antibiotics for future infections. So, I would caution folks to tread very carefully here.

I know of a person who had been told by several physicians that she has MS. She has the classic presentation and positive findings on brain MRI. She is in such deep denial, however, she refuses to accept her condition and the treatment that could very well improve and prolong both quality and quantity of life. Instead, she goes to a very well known "LLMD," who is insisting she has Lyme. I've been checking on her from time-to-time to see if she has made any improvement after two years of heavy antibiotic therapy, and she is much worse, physically than she was before she ever started treatment. Soon, I fear she will be in multi-system failure from the drugs, and she'll have advanced end-stage MS with no hope for regaining whatever function has been lost from all the time (and money) she has wasted.

I'm not looking to stir up controversy here, heaven knows we've had enough flame-throwing on the lyme issue, however I do think people have a right to be informed on both sides of the debate.

Blessings,
Sue
 
Suzi,
Thanks for the informative post.

So what would your advice be to someone that has had neuro-type symptoms for a couple of months. Go to an llmd? Get the igenex? I'm not 100% convinced that what I have is lyme. When I'm on this board everyone tells me it isn't lyme and I've got to learn to live with it. When I'm on a lyme board everyone tells me it almost defintitely is lyme and I need to see an llmd immediately. But you say that llmds can't be relied upon 100% either, so I'm pretty confused. Any advice you can give me since you've been through this already will be appreciated.
 
Hi kl,
I empathize with your plight, I truly do. There was a time when I was so anxious to figure out what was wrong with me, I would have voted for anything-including Lyme, as long as it wasn't **S or MS. Desperation was what led me down that path, and this board was what finally set me straight.

I'm not sure where you are in your diagnostic process, but depending on your answer, I would say (if you haven't been dx'ed with bfs yet,) get yourself to a major university medical center, the best neurological specialist you can find, and allow him/her to work you up. If you are concerned about lyme, you can always go to an infectious disease doc to determine if lyme is an issue.

Whether you want to take it further and send bloodwork to Igenex and go to a LLMD is going to be your call. I can only tell you that FOR ME, it was a huge waste of time and money, and ultimately delayed getting my real diagnosis, which was bfs. Once I knew I had bfs, my symptoms diminished significantly, just because I was so relieved to finally have a name for what was going on inside of my body and that it didn't involve some sort of "sclerosis."

If you've already been told by a reputable neuro that it is bfs, or anxiety or at least none of the bad guys, I would suggest you live as healthy a lifestyle as you can, eat right, exercise, and then...forget about your twitching.

Once again, I can only speak from my own personal experience. The decision of how far to go until you are satisfied with your diagnosis is yours alone to make.

Blessings,
Sue
 

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