Thank goodness I found this site! Here's my story. (long)

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Thank goodness I found this site! Here's my story. (long)

Postby whatnext on September 6th, 2004, 11:50 am

Hello.
I'm a 37 yr old man, single, community college prof, and in very good general health as evidence by excellent complete annual physicals. I have a history of sinus infections and allergies and in 1996 I was diagnosed with PSVT, most likely due to prolapsed mitral valve. I take half of a 20mg Propranolol tab twice a day with no problems. Please let me share they story of how I ended up posting here.

Back in May, I finally got into the habit of walking and had built up to over a mile a day (not bad for a near couch potato). I noticed some bad sinus congestion and also noted that I had a mild balance problem. It wasn't vergito, but just some unsteadiness and I basically ignored it. Big mistake. By the middle of June, the sinus condition degraded into a really nasty sinus infection. Now, I wasn't convinced that was my problem becuase I didn't have any fever. My doc said that more thn 90% of sinus infections don't present with fever and he clearly saw the signs to make the dx. Now, before seeing the doc the first time, I had one episode of extreme leg fatigue, almost cramping but it wasn't really wasn't cramping. Nevertheless, I was petrified. Doc said it was generalized myalgia from the bad infection, but I had already done the absolute worst thing I could have done. I'd gone to the Internet to look up my symptoms (not yet having gotten the sinus infection dx) and convinced myself that I had MS. I did a bang-up job too. I was petrified! I told this to my doc and he assured me that he saw no abnormal neuro signs of any sort. My balance problem was due to negative pressure in my middle ears (retracted ear drums). He put me on the first of three rounds of antibiotics, thus decimating my appetite and I couldn't eat for nearly two weeks. All the while, I was convinced I had MS.

Well, 3 or 4 weeks, 7 doc visits, 1 ER visit, 1 second opinion, and many web sites later I was diagnosed with anxiety and I entered counseling. About two weeks ago, I happened across yet another ALS site and managed to convince myself that I had it. About a weeek ago, I developed fascics in my calves (minor cramps too), thighs, arms, and one day my right bicep did something that I can only describe as a hula dance. I was fixated on sensations in my legs (esp. my calves) and the twitches have really thrown me for a loop. My doc put me on Zoloft three days ago (Sleep? Who needs sleep?) and I see in the patient info that it too can cause muscle twitches, which is good because I felt some last night that I'd not felt before.

As convinced as I was that I had these disorders, I somehow managed to mow my yard (0.35 acres) with no problems twice in the past few weeks (slow growing grass) and I can walk 1.25 miles in the evening in about 30 minutes. Not bad for someone with both MS and ALS, eh? I obviously did something to my hamstrings while manhandling the mower last Thursday because they're both very sore in the same place on each side.

Seriously, I'm very new to this anxiety thing and I'm having difficulty dealing with it. I never dreamed I'd be in therapy much less on Zoloft. I can't tell you how much reading the posts here reassured me. Interestingly, as I sat here and typed this message my twitches have completely stopped. Interesting.

Thanks again.
whatnext
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Postby Stephanie on September 6th, 2004, 9:03 pm

Anxiety can wreak havoc on anyone's life. We've all been there with the shear panic that consumes us at times. For most of us it is a rollercoaster ride. Try to stick to the facts and not let your mind wander and definitely above all else do not visit als websites! No matter what disease you look up you will always find a symptom you can relate to. You sound like you have nothing more than anxiety +/- bfs. Cramps and twitching are symptoms of bfs. My brother has ms and he is doing fine. My friends mother has had it for 20 years and so has her husband (4 yrs) and they are also doing fine. I wouldn't spend time worrying about that. If you have no profound weakness and especially after all those positive Dr visits I wouldn't worry about als either. Read more posts on this site and you will see that you are not alone. Hang in there!
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Postby garym on September 6th, 2004, 9:18 pm

Whatnext,

I have only one question, did you take any of the following antibiotics? cipro, levaquin, floxin, amicrobin, or tequin

Could be related,

Gary
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Postby whatnext on September 6th, 2004, 10:12 pm

garym wrote:Whatnext,

I have only one question, did you take any of the following antibiotics? cipro, levaquin, floxin, amicrobin, or tequin

Could be related,

Gary


First round was a 10 day round of Augmentin (875mg bid). We stopped at day 8 because I simply couldn't eat by that point. Second was a 10 day round of Cefzil and third was a 7 day round of Cefzil. I would add that I was having weird leg sensations, particularly what I perceived as stiffness in my calves, before taking any meds.
Last edited by whatnext on September 6th, 2004, 10:29 pm, edited 1 time in total.
whatnext
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Postby whatnext on September 6th, 2004, 10:27 pm

Well, I have a confession. Watching myself twitch and cramp this weekend, combined with starting Zoloft and all made it easy for anxiety to get the best of me, and it did, but for the last time I hope.

After lying in bed all weekend, I decided to go to the ER. I was really panicking at the thought of having ALS and I had not read many other posts, like BFS In A Nutshell, yet. The anxiety was in complete control and I ended up spending almost 6 hrs in the ER, all for a few klonopin tablets and about a $200 bill that'll come in the mail next week.

Of course the doctor didn't actually address the ms/als/whatever issue. On my way home, I was actually rehearsing how I was going to tell my parents and brother that I have ALS. I pretended to grade a set of essays, thinking how I would tell my students. I twitched and cramped the whole time.

Then I decided to check my email one more time before pretending to get some sleep and then I read the Nutshell post and a few others. I'm sitting here right now nearly in tears...tears of relief. It's like a fog has been lifted!!!!! Not a twitch in the house. Fear of ALS has kept me indoors for weeks and it's what prompted last week's doc visit and the Zoloft.

The clincher for me was the "perceived weakness" concept. Since June I've perceived that my legs were very weak. In reality, I've never had problems climbing steps at work (don't have steps at home) or mowing the grass, but I was literally AFRAID to mow the grass for fear of collapsing in the yard. I was AFRAID to go out to eat with friends. I was AFRAID to go to work. I was AFRAID to go out to get the mail. All because I confused true weakness with what I was incorrectly perceiving. Do you realize that I've spent the better part of the past three months sitting on my bed, watching the world from the Internet, all out of the fear that I had a neuromuscular disease? Many times I was afraid to even try to stand up because I knew that "perceived weakness" would still be there taunting me. I've been through hell...the worst thing I've ever experienced in my life.

The Internet giveth me my anxiety, and THIS WEBSITE (along with counseling) taketh it away. YOU ALL SAVED ME!!!!!!!
whatnext
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Postby puggriffey on September 7th, 2004, 11:55 am

Whatsnext -

It's awesome to think about what a difference this site has made in many of our collective and individual struggles with this thing (whatever it is/they are). You are on the road to recovery now - once that initial fog has been lifted, you at least know what that feels like and can cling to it when things get tough.

Now, something (hopefully) even more useful for you:

- You WILL continue to have symptoms. You are probably in for a wonderful/relaxed stretch of several weeks of feeling better now that you've gotten past the initial dark stages. Gradually, your symptoms will return. Do NOT go back into the internet searching for other stuff. Come back here, and trust what is said.

- You will likely start to doubt some of what your doctors have told you and/or what you read in the BFS in a Nutshell post. You may even feel like it was a lifesaver, you took it, you used it for what it was worth, and now you are seeing past it and feeling different things that must be sinister. RESIST these feelings - that will be the second spiral starting. I've seen many of us, me included, go through that with my very eyes. It can sometimes get tougher than the initial fear before you really knew any better.

- Keep coming back for support when you need, and don't try to "fight off" the symptoms when they return. Instead, welcome them back as an old friend, smile and laugh about them (for example, MJ Fox said he sings when he feels his Parkinsons waxing and waning about how good his drugs feel...), but whatever you do - DON'T GO TESTING YOUR STRENGTH, monitoring yourself constantly to see if there are differences from the first time around, study yourself for atrophy, etc. You will cycle yourself back into the dark place again, all because of things you are subconsciously doing to make it happen. I wish I had taken this seriously when I first went through this - when my fog lifted, and my initial sever symptoms disappeared, I convinced myself I had made a tremendous recovery that others on here weren't as fortunate to make. It is the RARE person whose body allows this to happen - this stuff might be with you for a while - DON'T let it "surprise" you when it comes back.

Most of all, get out of the house, take deep breaths, smile, and enjoy your day!!! You've earned it - I hope your recovery goes well.

JG
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Postby Stephanie on September 7th, 2004, 11:20 pm

JG said it all! It's hard to overcome the mental part of this, but you can do it! Hang in there!
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