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Dave Jr.

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Hello everyone. This is my first post but I will keep it short and sweet. 41 yr old male. Good health until Virus or Flu hit me.

These symptoms all started after catching a virus on vacation back in Sept. 2009

Symptoms: Feeling shaky inside (vibrations), twitching all over my body, sudden jerks at night that wake me up, muscle fatigue, flu like symptoms sometimes, shaky hands, stiff neck and back with a burning sensation, jumping out of my skin like I had 20 cups of coffee.

I don't have slurred speech, tripping or problems swallowing.

I have had the following tests:
Lymes=Negative Full spine and head MRI for possible MS= Negative I do have a couple of slightly bulging discs. Blood test for Thyroid= Negative

I have blood work coming back today that my neurologist had me do. One was for ANA, Double Strand DNA and others so I have to get those findings.

I can't calm down unless I take a Xanax but something is wrong. I can feel it. Any ideas? Thanks for your help in advance, I'm really scared since I have 3 small children that need me.
 
Hi Dave - Sorry to hear about your problems. I'm not sure what led you here but really it doesn't sound like ALS at all. You might want to look at what they call "post viral syndrome". It is relatively common for people to have prolonged fatigue and similar problems after viral infection. In the worst case this can become something like chronic fatigue syndrome which can go on for a long time. Unfortunately the cause is not yet known, and the diagnosis is difficult. It sounds like your doctor is being very thorough and giving you a full battery of tests, which is good. I hope they will be able to find something that can help you.
 
Thanks very much for your assessment. My initial thoughts were something auto immune but I looked up my symptoms and a whole host of diseases were right in front of my face. I feel more shaky than weak and I'm not ruling out a problem the bulging disc in my neck and lower back. I've been sick for so long that I may ask my doctor if I should see an infectious disease specialist. I sometimes feel like I'm loosing control of my own body. I will look up post viral syndrome this evening. I'm pretty sure I had H1N1 or some other nasty bug. Thanks again!

Dave




Hi Dave - Sorry to hear about your problems. I'm not sure what led you here but really it doesn't sound like ALS at all. You might want to look at what they call "post viral syndrome". It is relatively common for people to have prolonged fatigue and similar problems after viral infection. In the worst case this can become something like chronic fatigue syndrome which can go on for a long time. Unfortunately the cause is not yet known, and the diagnosis is difficult. It sounds like your doctor is being very thorough and giving you a full battery of tests, which is good. I hope they will be able to find something that can help you.
 
Dave

Where did you vacation, when you came down with the virus....Did you leave the country or go some where tropical?
 
were you tested for guillan-barre?
 
I was on vacation for 10 days in Myrtle Beach, SC back in September. At the time, H1N1 was running rampant but I'm not so sure I didn't have something else. I was in pools and hot tubs as well. I had a high fever, chills, body aches and a cough that lasted for 2 months. I just got a call from my regular doctor that my blood work came back all within normal levels. They are sending the results to my neurologists and I have an appointment with him Feb 5 to go over all symptoms and have an EMG. I'm still think I may have Lymes or have these side symptoms from the day I caught that virus. I'm not sure if my blood tests covered guillan-barre. I woke up today feeling better than usual. I'm still very shaky but I'm not twitching as much and I'm not as weak. I went home and put a heating pad on my back to relieve some of the pain and took 2 Xanax to help me calm the nerves down. Should I see an infectious disease specialist? Also, a nurse friend of mine told me I should be on antibiotics for Lymes even though my first test came back negative.
 
Not all Lyme tests are created equal. Someone else can chime in with the name of THE lab that you want the test sent to - I just can't remember the name.

All Lyme tests even give a false positive sometimes.
 
I believe IGINEX, is the one I did. A girl can always hope, (I TRIED)... But seriously, it does not sound like ALS. Relax... take the fact that you are feeling a little better, as a finger pointing in the direction away from ALS..
 
ANA Direct Negative
Anti-DNA (DS) <1 Negative
Protein Electro Serum-RL all normal with a 2.1 on AG Ratio which is .01 high
ESR- 4
CPK Creatine Kinase 105 which was in the middle range.

I think I may have either Lymes or Post Virus Syndrome. I'm going to ask my doctor to put me on an antibiotic just to be sure. This is horrible but not in the same league as you guys. Wishing you the best.

Dave
 
I have asked two neurologists, a rheumatologist, and my general practitioner about the validity of the standard Lyme disease test, which is an ELISA test. All of them said if a person is having neurological symptoms related to Lyme disease, this test would be positive. There is much debate about whether additional tests done by a specific lab--- I believe Western blot-- is more effective in detecting infection with the organism causing Lyme disease. The doctors I have seen thus far have indicated that the ELISA test really is the gold standard when symptoms indicate infection is far along enough to cause neuro and other problems. There is so much controversy about this and encouragement to see a "Lyme-literate" doctor. I am not really sure what to believe, but just putting it out there.

also, I think the EMG would detect whether you are suffering from Guillaine-Barre syndrome. I was being considered for that diagnosis early on.

good luck. hope you get some answers soon.

Sandra
 
Hi... CPK results in your blood would also point toward ALS... or at least something going on. If your blood work was fine, then it's likely it's not ALS. God bless.
 
Thank you all very much for your answers and well wishes. I know my symptoms don't compare to what you are living but when I was stuck on the couch shaking, twitching, aches and pains and anxious, I was praying for Lymes. I still don't know what is going on but I'll keep pushing on hoping to find out. I think I will have to change doctors. My general practice doc just doesn't seem to care. God Bless you all!
 
Hi Dave,

You commented on my post earlier, as it appears that we are in the same boat right now with a host of neuro symptoms, normal neuro exams to date, and an acute and progressive onset immediately following a virus in Sept! All my docs and neuro's are saying Post-viral...give it 3-6 more months, and it should be completely gone. YET, I will be seeing a Lyme Literate MD this week primarily b/c three weeks before the virus (4-5 weeks before the symptoms started) I developed a huge red lesion on my left leg with a weird white center...as a result of some type of bite; thus, I'm still a little suspicious. For now, I'm taking lots of vitamins and detoxing daily.

Someone made a comment about the Creatine Kinase providing some indication about ALS....mine was on the low end of normal (38) with my initial bloodwork in October and even lower with my bloodwork last week (33). High levels are indicative of muscle breakdown...correct?

Please keep us posted on the outcome. Hoping you have a complete and speedy recovery.
 
always get a second opinion it could just be axiety but have another doctor check you out for sure worring can make your wholebody feel worse than it really ie even our thinking can become overpowering that all we think about if we feel a pain or something it always comes to are minds the worse reading uo on the internet can scare the daylights out of you make it easier on yourself and get a good doctor to exsamin you before this drives you crazy your frienf jeffp
 
Hi Jimco,

As the doctor explained it to me, CPK is an enzyme in muscle cells that is released into the blood when there is some damage to muscles in the body, from inflammation, breakdown of muscle, heart attack, autoimmune conditions, etc. as long as your CPK is still in the normal range, I would not worry about it. My doctor also told me that even within the normal range, it can vary widely, depending upon one's level of exertion, or if you bump a muscle or something. so the CPK may be on the higher end of normal after a workout at the gym or after you pull a muscle.

I think it makes sense to seek out further testing for Lyme, given the type of lesion you describe. if you search on Lyme disease here, there was a rheumatologist who posted about specific Lyme testing you can have done at a particular lab. there is a lot of controversy about whether this testing is really more accurate, but if you are going that route, you may as well check it out.

good luck-

Sandra
 
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