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Very much afraid.

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Old 08-31-2006, 11:14 PM   #1
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steerpike HB User
Very much afraid.

Hi Everybody,

I've been operating on the assumption that I have undiagnosed MS-- however, my MRI was clean. I had a normal NCV test, but no EMG.

1. In February came down with a strange sore throat (strep?) that wouldn't go away... accompanied by extreme fatigue.
2. Six months later, I developed sudden onset neurological symptoms-- muscle weakness, perceptions of numbness, tingling, changes in sensation, extreme cognitive changes, disorientation, short term memory loss, depersonalization, extreme fatigue. The sensations have spread from my arms to my face and legs. For the most part, they feel like I've been injected with an anaesthesia, although my sensation hasn't been dulled-- the pin-***** test is easily felt. In the beginning, it felt like they had simply fallen asleep.
3. After taking a number of supplements for autoimmunity, the main symptom I have now is weakness. My arms feel like I've lifted 20 pound weights all day. My legs also tire easily. In the past month, I've noticed the appearance of cramping and occasional twitching. My tongue also feels occasionally numb/weak.

My neurologist is currently missing in action. Haven't heard from him in 1.5 months. Does this sound like ALS at all.

Going to have the IGENEX test too.
Recently had my thyroid properly checked out... still pending. Also checking for paraneoplastic cancers... still pending. No inflammatory markers discovered. Really need an EMG.

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Old 09-01-2006, 12:01 PM   #2
Join Date: Sep 2006
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Chat_Noir HB User
Re: Very much afraid.

I hesitate to give you this advice, in part because symptoms you mention can be related to so many illnesses. You are correct to continue a vigilant effort to get a diagnosis from a qualified physician. However, in looking back through your postings, I see you haven't posted at all in the Anxiety, Panic, or Stress related boards.

So much of what you describe is also a description of what happens daily in the life of those suffering from stress, anxiety, and panic. Sometimes a simple illness seems to set something off, and then everything falls apart.

Consider reading some posts under those boards. I think you'll find many descriptions so similiar to yours.

I went through these boards, searching, several years ago when I began having many of the same symptoms as you. MS, CFS, fibromyalgia, etc. Even though I was diagnosed with anxiety (following an arthritis flare) at age 32, I went through quite a denial phase. I'm something of a hypochondriac now; never giving my health much thought prior to that flare. I seem to dwell on every symptom now. Personally, I think there's much more to be discovered on anxiety, stress, panic, but at least there is support here. I used the board consistantly several years ago when first diagnosed with anxiety. Things calmed for a while, but a job change has me back, symptomatic. I do wish I could remember my original SN!

Old 09-01-2006, 08:01 PM   #3
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steerpike HB User
Re: Very much afraid.

The only problem is, I'm not feeling very anxious. I'm feeling very frustrated and pessimistic at this point, however. Thankfully I'm in little pain.

I can say with reasonable confidence that anxiety doesn't cause MS-like symptoms. It may mess with bodily hormones and the immune system, but it isn't the sole factor in neurological illness-- it definitely has a role, however. I imagine anxiety, viral/bacterial infection, hormonal levels, genetic disposition, etc may ultimately collaborate to trigger autoimmune diseases.

Hopefully, you were properly checked out before the doctor pronounced you anxious. You may have a mild case of MS. Or who knows. Keep in mind that doctors like to push drugs, especially with an idiopathic diagnosis.

Feeling a little better today, as there's very little literature supporting post-infectious ALS. I was brutally sick for about 3-4 months before the current collection of symptoms came on. It's probably some kind of post-infectious MS-like thing. arg.

Old 09-06-2006, 01:41 PM   #4
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vigilantmom3 HB User
Re: Very much afraid.

Hello, I am the mother of a 4 year old who has all of the symptoms that you described... including the tongue sensations plus numerous other things to include full body paralysis for minutes at a time. The docs can't come up with anything. Until recently we went to Children's where they suggested a strep throat culture. Have you had one? Also an antibody titer test could be useful. Please study PANDAS and talk to your doctors about it. You should be tested for strep even if you are a little stuffy as I have found that just the sniffles and more twitching means that my son has strep and that it needs to be treated. You've got to demand the culture that is sent away or it will probably not be suggested to you as a possible cause for your neuro manifestations. If you have a strep virus that is left untreated you can develope such high antibodies that they begin to attack your brain much like Rheumatic fever. Thats the explanation that I have received so far in regards to my sons strange array of symptoms that no one can explain. Good luck. Run to your doctor don't walk because if PANDAS is real then it is my experience that the neuro keeps getting worse. Also, I have read that Epstein Barr can later manifest its self as MS. Thats worth being tested for also, probably.

Last edited by vigilantmom3; 09-06-2006 at 01:43 PM.

Old 09-06-2006, 06:07 PM   #5
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steerpike HB User
Re: Very much afraid.

Hi Vigilante Mom

I've always thought some sort of strep-like bacteria may have been involved. Unfortunately, my last Strep ASO titer had plateaued, after a month of antibiotics. That was 3 months ago. Maybe it's time I had another.

I'm currently taking medium dose amoxicillin. I've got about 5 weeks worth... so we'll see what happens. I was given it for possible Lyme. Maybe it'll work on possible strep too.

Unfortunately, I've had a bit of a falling out with my GP, as he seems unwilling to do anymore tests. He says he doesn't know where to go from here. So.... I'm currently looking for another doctor.

Also.... I'm a little less worried about ALS, as I've had a Nerve Velocity Conduction test.... apparently for some unknown reason ALS, which tends to affect motor neurons, also causes a slowing of sensory nerve conduction rates. Apparently, my sensory neurons are fine.

Still, my neurologist could've given me an EMG. It's usually considered standard procedure.

Old 09-28-2006, 04:10 PM   #6
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Very much afraid.

Hi steerpike. I am sorry you are feeling so bad. I know it is frustrating when you cannot find out what is wrong.

To me is sounds like you may have Lyme disease. Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state.

Below is a Lyme Disease symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No Lyme test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Are you being tested for Lyme there?

If you would like a doctor recommendation for your area, let me know.

Don't give up, you will find out what is wrong.

Old 09-30-2006, 01:57 PM   #7
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chigs489 HB User
Re: Very much afraid.

It does not sound like ALS. That manifests differently.

What it DOES sound like is

a) the virus/bacterial infection you got caused an "auto-immune" issue of some kind. This happened to me last year around this time. I got sick and then a couple weeks later had all sorts of muscle pain, twitching, etc. I freaked out, but then after a few months it went away. One thing that hepled was getting into the gym and lifting weights.

b) possible reaction to an antibiotic. When you had the throat infection, did you take ANY of the following drugs?: Avelox, Cipro, Levaquin, Tequin, Floxin? These drugs cause MAJOR neurological issues, along with ripped tendons, myalgia, etc. The effects can last for years after the dosage is taken. I took Avelox in 2004 and suffered nerve damage in my elbows, peripheral neuropathy, etc.

c) possible MS -I don't want to scare you, but get it checked out. Talk to your neurologist and have an MRI just to be sure. Again, I doubt this is what it is, but get it checked anyway.

Don't panic. I've had all of these symptoms, and in EVERY case, it was due to a drug reaction, anxiety, an infection, or even an injury. ALS is rare and progresses suddenly. Put it out of your mind.

Old 10-02-2006, 12:36 AM   #8
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steerpike HB User
Re: Very much afraid.

Hi and thanks for all the attention!

My neurologist is sure I don't have MS or ALS, despite the odd symptoms (had an MRI and NCV test) I'm guessing I should take his word for it, as he's been practising for at least 30 years. The internet really has no expertise, only lists of symptoms.

Frighteningly, I met a man with ALS the other day... I assumed he was mildly disabled until he rolled up his pant leg to reveal a tiny, severly atrophied leg. He says he gets twitches at night too. (Shudder) Needless to say, this didn't help my paranoia at all. Words of advice: never talk to strangers in the waiting room.

Still, I'm not sure I have Lyme disease either, although I'm currently being treated for it. Interestingly, after 3 weeks of Amoxicillin, a great deal of my strength has returned. Also no more exercise intolerance/fatigue. Today, I even went for a 3 mile walk, with no cane. I still have stiffness in hands/fingers and an odd sensation in my legs. And twitches. The cognitive crap is gone, thankfully. No atrophy or weight loss has been noted.

I feel it's definitely something bacterial, whether Lyme, or strep, or something else. Unfortunately, my Lyme MD may be shutdown, as the ignorant medical community doesn't believe Lyme exists in the pacific northwest despite evidence otherwise. So, as a precaution, I've had him arrange for 6 months of Amoxicillin. I really, really hope it's enough to clear the infection.

Chiggins, how long did it take for your post-infectious muscle problems to clear up. And does the 1066 in your name refer to the Norman Conquest?

Old 10-02-2006, 06:45 AM   #9
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chigs489 HB User
Re: Very much afraid.


it took about 4-5 months actually. I had twitching all over the place, and cramping too. I started getting into the gym and lifting weights, especially in my legs. Didn't do much at first, but then things really started to improve. My leg press went from 190lbs to over 500lbs in 4 months. I knew that if I had ALS or MS, there was no way I would see a strength gain like that.

The exercise reduced stress -which was a big factor in the twitching.

I also began drinking tons of Gatorade and Pedialyte -under the assumption that dehydration was part of the problem. This helped as well.

The one thing that made twitching worse was lots of running. Something about the impact... so instead of running, lift weights, hydrate, relax, and don't drink too much alcohol.

It's been over a year, and I feel fine. Still get a little twitching here and there, but I don't even notice it anymore.

The MRI has cleared you -you are FINE! Good news!

So go out and enjoy life.

and yes, 1066 is the Norman Conquest

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