DaveKD's Story

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DaveKD's Story

Postby DaveKD on September 16th, 2002, 10:27 am

In late June of 2001, I came back from vacation with my family and felt a bony pain in my mid lower back. A few days later I felt flushed and feverish and got night sweats a few nights in a row and assumed I must have a fever that is breaking. The next day my right ankle swelled and I had hip pain and wrist pain as well as a general crappy sick feeling. I went to the doctor and he said that it could be viral, but ran lots of blood work to be safe. I came back a few days later with the same complaints and he ran more blood work. All blood work came back normal. No Lyme disease, no cancer, no hepatitis a,b,c and no rheumatoid factor. My joint pain and malaise continued and my muscles were sore as well. I was sent for X-rays and they found swollen lymph nodes deep in my chest. A CAT scan was done to get a more conclusive look. I was then diagnosed with Sarcoidosis a systemic autoimmune disease that causes the bodies inflammation response to go crazy and is typically a lung disease but it is systemic like RA and Lupus but not as dangerous as those. I was sent to a Sarcoidosis pulmonary specialist in Boston and was told that Sarcoidosis with sudden onset and joint involvement as the primary complaint is a kind that tends to go into remission with out need for treatment other than lots of Advil for joint and muscle pain and the malaise. (For more serious cases they use steroids) Psychologically I was very shocked by the diagnosis as I was 30 and had one 7yr old child and one on the way. Although sarcoidosis is only fatal in 5% of cases I could not see myself getting better and feared I would have the progressive form of the disease. While I was waiting for the Sarcoidosis to go into remission I started to notice movement in the arches of my feet like a pulsating. It then spread to my calves and one day after visiting a park with my family I was getting into bed and my calves started twitching like fireworks. My Doctor said don't worry as many people get twitches after exercise and may be made worse by the Sarcoidosis. As winter approached my Sarcoidosis was leaving, but I started to wake with stiffness in both forearms and my calves would feel very tight. My anxiety started to grow. Did I have some other disease MS or MD? Was the Sarcoidosis affecting my central nervous system, which can happen, but is very rare? My doctor said that this is not the way these diseases present, but he ran a muscle enzyme test to help reassure me. It was normal. I started to really get down mentally about my health at this point, my wife was expecting our second child in December and I thought I would not make it. I should have been thrilled that my autoimmune disease was leaving and a new child was on the way, but I could only think about my health. The fasciculation’s spread up my body over the period of one weekend. This was too much for me to take psychologically. I started to read health books and kept zeroing in on MS and ALS and the anxiety went through the roof. (I have had problems with anxiety attacks and generalized anxiety since my early twenties so I was really anxious)
I started to get paresthesias and prickly feelings that roamed around but were mainly in my legs. In mid December I was not sleeping well and I felt as if my bicep muscle was going to snap when I lifted small things and the back of my legs felt like a brittle rubber band. I thought I had lupus, scleroderma, MS, MD, Organic brain disease or some unknown autoimmune disease of which I would be the poster child.
To make a long story short in late December I almost had a nervous breakdown and was sent to a psychiatrist. He put me on four .5 mg klonopin a day and Paxil 20mg. I too noticed that the paxil actually increased my twitches and during the break in period I had some tongue problems and myclonic jerks, but it helped my mood to the point were I was saying who cares! I was sent to a neurologist more for reassurance. I had a normal EMG and the Neuro said stay on the meds, as anxiety is a major contributor to my symptoms. She did not even want to label it BFS, she just said they are benign fasciculations and not to worry and get on with my life.
The large amount of klonopin knocked my twitches down to almost zero but I did not want to live my life on that much klonopin (although my body did adjust). But seeing them go down made me realize that perhaps anxiety was most of the problem. I am now on 10mg of Paxil and I take one Klonopin a day. Half in the morning and half at night. My sarcoidosis is currently in remission and I mentioned to my doctors if the BFS is a result of the inflammation, but they say it is not. My theory is they both hit around the same time so perhaps a virus caused both. As far as my twitching now I think it is milder than some of the members here. When I am at work I can feel random ones in my legs and occasionally they spread to my arms and parts of my lower back and butt. They are most active early in the a.m. as I wake and in the evening. Since I have been on medicine I almost never have paresthesias and very little stiffness. I think there is a definite autoimmune connection, but why one person gets RA and one gets lupus and one gets MS is beyond me. When I was researching diseases I noticed in theory almost any autoimmune disease can attack the nervous system. I have tried many supplements and although they may be good for my health I do not think they reduce twitching, but I take them more as insurance to avoid the ever looming “Something worse”. I have begun reading books on mind over matter and using creative visualization and relaxation tapes. The fact that there is such a thing a placebo effect gives me hope that we can all help ourselves without as much medicine if we get our minds to keep that placebo effect going! :D
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Postby ro dash on October 2nd, 2002, 12:11 pm

:D
I read your story, and I too, know what it is like to have twitching so bad that you think something is wrong with you. I never thought I had ALS, but I did think I had a muscle disease (at one point, some muscle enzymes were elevated and a neurologist thought myopathy, but my EMG turned out normal and ruled it out. I just had more blood work and everthing was normal. I have been twitching for eight years, but only in the last year in a half has it been so bad and annoying that I've been to every doctor. I also get these paresthesias in my leg and it freaks me out. The twitching is so annoying, I want to scream. No one understands what we are going through. Anyway, I do have anxiety about the twiching, which I wonlder if it makes it worse. I'm going to start to talk to someone on Monday. I heard Paxil is an amazing drug and has helpled a lot of people I know. I might need to go in that direction at some point. Anyway, good luck and I'm glad you are doing better.
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Paresthesias

Postby Jeff on October 3rd, 2002, 3:23 pm

You mentioned that "I also get these paresthesias in my leg and it freaks me out." What exactly do you mean by paresthesias? I've heard that word to describe a number of symptoms - numbness, tingling, burning, etc.

I get this whacky tingling feeling in my one foot every now and again, it lasts for a few days to a week and then disappears for a while. Is it like that?
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Postby DaveKD on October 9th, 2002, 1:30 pm

To Ro Dash - Paxil gets slammed a lot on boards, but for me it was the most powerful of the SSRIs for me. Paxil kicked in in less than a week. The important thing to remember is that they all have sides effects for the first few weeks including (for some like me) increased twitching.


To Jeff - Paresthesias is just a fancy medical word for prickling, pins and needles and burining feelings, but not true numbness. I would get these electric zap feelings in parts of my legs and back and warm spots. Luckily these have subsided to the point I no longer notice them. Of course I still twitch. The problem is Paresthesias are common with BFS and Anxiety and as you know they are both intertwined. Untill I found this site I knew they were associated with anxiety, but I also new they can be related to MS. So the twithces had me thinking ALS and the Paresthesias thinking MS which caused adrenaline to soar causing more twitches and paresthesias. What a circle I was living in! The good news is I have broken free from that circle.
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Back with some concerns - MRI tomorrow

Postby DaveKD on June 22nd, 2004, 10:57 am

I have left the boards for over a year and I must first say that this board helped me through a very tough time in my life and I am glad to see Aaron is still here. :D
During the past year or so I broke out of my cycle of fear and syptoms and I still twitch and vibrate, but it is very sporadic and I ignore it. I was recently sent on a business trip to India for two weeks in late May and had a Hep A shot a few weeks before the trip. I came back not feeling right and had blood work and a chest X-Ray (all normal) During the end of my trip and after I had nightsweats every few nights. These have now stopped. During the last week my Facics have picked up, but my Paresthesias and feeling like my arms and legs itch and the sporadic feeling of chills/goosebump feeling running down certain random parts of my body are realy worrying me. My doctor has scheduled and MRI for 5AM tomorrow. I am a bit worried because of the excess tingling, burning and paresthesias. I do not know if it was the darn Hep A shot, some wierd virus from India. Or my worst fear that the sarcoidosis has come back and is now effecting my nervous system. This is long, but I had to get this out of me. Anyone else get lots of random paresthesias :(
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Back with some concerns - MRI tomorrow

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