Worried I have ALS or Lyme!

[greg 38]

Im a 38yr old male. My problems started in the spring of 2005. I experienced floaters, pain in the right knuckle of my pinkie finger and numbness in some fingers of both hands while lying down.
  In late August, I had blurred vision lasting one day. I went to an Opthamologist and my family physician ordered a stress test, MRI of brain, Carotid test and Sono of heart.  All came back OK.
  In Oct, I experienced back pain for no reason in the thorasic area. My doctor sent me to a physical thyrapist for my upper back problem. After a couple of sessions with a PT I started experiencing lower back pain and tightness in hamstrings and calves of both legs when standing. The pain was felt in either leg but never both at same time. I also started having muscle twitches in both legs while sitting. I was sent for MRIs of Thorasic and Lumbar. There was no evidence of pinched nerve. The Neurologist contributes my problems to peripheral nerves. I have an appointment for an EMG next week.
For the last month and a half, the pain in my upper legs has now moved to my feet. I have experienced buzzing in my heels, problems with plantar fascia and achilles. I have left heel pain when I wake up and start walking but after about an hour the pain goes away. The pain I have been experiencing since Jan comes and goes throughout the day.
  Other symptoms that have experienced are fatigue, night sweats, ringing in my ear, pressure in my ear when weight trainng, nausea, the floaters have increased, filmy vision, heat sensation and itchiness in both legs (from feet to shin) and headaches.

[CCF-Neuro-M.D.-PW]

I cannot give you a formal medical opinion over the internet unfortunately as this site is purely educational

A normal neurological examination and MRI goes a long way to exclude serious neurological disease, and I would be encouraged by this. ALS is a rare disorder, and a diagnosis can be made if there is signs of upper and lower motor neuron disease in more than 1-2 limbs by the clinical examination and EMG. Signs include objective muscle weakness or wasting with evidence of increased reflexes. It does not afect eyesight. Muscle twitching in the absence of muscle weakness or wasting is unlikely to be ALS.

Good luck

[johnflox]

You have to check first what medicines you took up to 6 or 8 months prior to the onset of your symptoms in 2005. Above all rule out that you did not take any antibiotic like cipro, levaquin or those belonging to that family, drugs for inmunological disorders or other powerful prescription medicines.

You have to be sure that you are not having a "delayed" reaction to such drugs, before looking for lyme or als.

All the symptoms that you mention fit a 100% in a reaction to an antimalarial, or a fluoroquinolone antibiotic, but also match perfectly with quite a few other syndromes.

[patsy10]

All these symptoms fit lyme disease as well.  I have most of them too. Lyme is difficult to diagnose.  If you get tested and it  comes back negative.  It doesn't mean you don't have lyme.  It's a clinical diagnosis.  There's a lot of info at lymenet.org if you haven't found the site yet.

[joshua217777]

Johnflox, you mentioned something about taking a antibiotic and months later have a reaction to it.  I have taken cipro probably about 8 months ago or so.  Also Ive took prednisone about 3 months ago.  Last 3 months out of nowhere came tinnitus.  Tapping noises, but the worst is any little noise, me talking, dishes hitting, talking on the phone my ears cant take it, makes a paper crumbling noise with each noise.  Can cipro do that after so long from taking it.  ENT recommended cutting stapes muscle for the tapping.  Dont know whats causing the paper crumbling noise and probably cant fix it.  I didnt know about having reactions long after taking something

[johnflox]

Yes, cipro and all fluoroquinolone antibiotics in general do cause very disabling side effects up to one and a half years after exposure. The most well known injury for doctors is tendon rupture, that takes place up to one year or more after ingesting the antibiotic.
Other very serious lesions show up as well long after the treatment with fluoroquinolones, one of them is intractable tinnitus.
Taking fluoroquinolones with corticoids increase the risks of suffering some limitating disorders, like those related to tendons.
Hopefully you are not having a reaction to cipro because it is not common to have just a single symptom of toxicity, like tinnitus, although it has been recorded too.
Some people start with several symptoms and tinnitus is the most annoying and disturbing, and the longest lasting.
In special cases, and in all severe cases, fluoroquinolones cause permanent damages. The new texts including in the package inserts of quinolones state that quinolones may cause irreversible neurological damage, and tinnitus is one of the most frequent neurological abnormalities caused by quinolones.
The most reliable source of information about quinolones is provided by a site created by some victims. I do not have any relationship at all with it. It is:
www.fqresearch.org
You may visit it to rule out that you are not suffering a reaction to cipro. Less than 2% of all side effects of cipro are reported as side effects, so the manufacturers want us to believe that is a very safe antibiotic.

[SNORCHY]

Can being on tetracycline long-term cause similar symptoms like twitching, tingling and trembling? Months after being on it for a like 6 weeks I a;sp developed a bitter taste in the back of my mouth which has subsided & the front of my tongue is a bit dulled. I have been having the neurological symptoms stated above for over a month...afraid of MS or something...
Thanks!

[SNORCHY]

As you seem to know lots about Lyme...what does the rash look like that is associated with Lyme Disease?
Tanks!

[SNORCHY]

As you seem to know lots about Lyme...what does the rash look like that is associated with Lyme Disease?
Thanks!

[patsy10]

It's called erythema migrans.  Do a google search.  Typically, looks like a bullseye with clear center and red ring around edge.  There are many variations though.  Look at the pictures when you do a google search.

[joshua217777]

Well tinnitus isnt my only symptom.  Squeeky and sizzling sounds in my neck.  Also for past 3 months feeling of something shut off to my head and jaw.  Almost a numb feeling.  Push on back of neck can make the same feeling.  About 5 times a day lasting a half hour a very sharp pain in left jaw.  Feels exactly like a tooth ache thats in my jaw.  Headache on my left side of head when it happens and cant even touch my scalp.  Guess its a nerve in my jaw or something.  Brain MRI just showed tiny scattered areas of increased white matter signals.  Neuro wasnt concerned about it.  I also took with the prednisone some kind of antibiotic they gave me in the ER that doctors, dentists never even heard of that ive been too.  SMZ/TMP double strength for a sinus infection I never had.  TMJ said I had a TMJ problem causing everything just by listening to my symptoms.  Kinda hate to invest 4000 dollars on a splint and not knowing 100% sure thats my problem.

[SNORCHY]

Thanks so much! I had exactly that type of rash for over a year & was told it was ring worm!!! I live in LA so not sure we have Lyme disease here but I was in NH twice in 2004. What test do I need to ask my MD to order for me to diagnose this?
You have been so helpful...I really appreciate it!

[patsy10]

You are welcome.  I've done lots of research  on it trying to figure out what I have.  I did have the bullseye rash as well back in 1992, followed by a neuro problem  like I have now which improved after 4 months of antibiotics.

Igenex labs has the most reliable testing.  Go to Igenex.com and get the 1-800 no.  Call them and order the kit.  Lyme WB IGG/IGM.  You need an order from your doctor.  It costs $200 for the above kit.  They don't take insurance but you can submit it after it's done to your insurance.  Your doctor could also order it at a standard lab but from what I read Igenex is most accurate.

Most of the time lyme is tested using the ELISA first then if that is positive a western blot is ordered.  The problem is, the ELISA is not all that accurate so if it comes back negative you could still have it.

For more info you can go to lymenet.org.

Best of luck of to you.

[greg 38]

Does a person with ALS experience tendon pain or pain in general or do they just experience weakneess? Also, would someone with ALS see extreme muscle weakness after 6 months of symptoms starting? My leg symptoms started in January and I just started back about 3 weeks ago weight training. I had worked with weights for about a year and half prior to my back injury in October. Before the injury, I was doing 3 sets of 10 at 600lbs on the leg press machine, now I am doing about 500lbs with same sets and reps. I feel as if my stamina is insuffecient because I get to the 8th rep of each set and I start feeling fatigued but I can complete the set. Does this sound like ALS?

[patsy10]

I'm no expert but I've read a lot trying to figure out what's wrong with me.  From what I know ALS does not cause pain except for muscle cramping.  It causes obvious muscle wasting and weakness, muscle twitching.  People ask about this all the time on this forum.  Search the archives on ALS and you can read all the neuro replies.  Good luck!

[SteveIT]

Here's what you could be causing your symptoms. If it is, nothing to be afraid of.

You sound like you have myofascial pain and possibly TMJ.

Myofascial pain comes from trigger points--little knots--in your muscles. They shorten the muscle, weaken it, and can be removed only by trigger point massage, injections, or specialized spray-and-stretch techniques. Trigger points are not only painful to the touch, but they "refer" pain to distant points that are not actually injured--the way you can sometimes feel an ache in one tooth when a completely different one has the cavity.

Here are some possible explanations for your symptoms:

-- Tinnitus as well as squeaking sounds in your neck (called "crepitis") can be caused by neck muscle dysfunction.

-- Sharp pain and headaches could be from TMJ, which is usually a muscle dysfunction rather than a true joint problem.

-- "Tooth ache in jaw" is also possibly from the TMJ, but trigger points in the jaw and face muscles also cause false tooth-ache-like referred pain patterns.

-- Blurred vision and floaters can result from a minor posterior vitreous detatchment. While not well-researched, it is speculated that these can occur from minor ischemic events in the eye (loss of blood flow) caused by, again, dysfunctional neck muscles.

Lifting weights can aggravate myofascial pain until the trigger points are treated.

In case you're wondering, I know all this because I had the same symptoms--plus many, many more!--and found relief with treatment.

So, if you're going to see doctors, try a physiatrist and an ENT who specializes in tinnitus. Ask whether you indeed have trigger points, and get help treating them. Look for a massage therapist who specializes in trigger point treatment. Most everybody has some trigger points, so even if this isn't the cause of your problem, it's good to ask the questions.

And yes, you sound like you have TMJ. I got great help from the Tufts Craniofacial Pain Center (www.orofacialpain.com) but if you are not in New England, you have to do some serious work to find someone who will really help you. I do wear appliances (they did NOT cost $4k!) but have also gotten great help from a couple of biofeedback sessions, homecare tutoring, and other techniques to learn to keep my muscles relaxed.

Good luck. Hope this was helpful.

[JDawg]

Greg,

I too have had most of the symptoms you mention.  I just turned 36 on July 1.  My achilles and heels have been sore, my pinkie twitches and other muscles do too.  I watched Back to the Future starring Michael J Fox about 3 weeks ago.  I noticed my hand twitching after watching it.  I felt like I had Parkinson's.  I am sure my OCD is causing these symptoms.  I have taken Fluvoxamine Maleate (Luvox) before and may start again.  It is possible that a combination of stress and or OCD could be attributed to your symptoms.  Try not to worry.  I am doing the same.  JD

[Alar1c]

I am a 45 year old male.  In March this year, mild tinnitus that I have had for several years went bananas and has stayed with me since then.  Some days are really loud, yet some are hardly noticeable.

My GP signed me off work for a month, over which various symptoms erupted.  These include -

Opthalmic Migraine
Nervous debility
Lower leg muscle weakness (one side only)
Upper back pain
Dizziness (tinnitus related)
Fatigue
Swelling hands (mainly at night)
High blood pressure
Buzzing across the left side of my skull
Shock awakening and sleep walking
Breathing problems

I have had blood tests for everything and an MRI, but apparently these all show how healthy I am!  I wish that I felt it.

In November last year I had a nasty virus that included fever symptoms, the most terrible night sweats ever over 4 weeks and bronchitis for which I was prescribed a Cephalosporin antibiotic.  I am wondering if the two are now connected.

I have also had a very stressful last year with looking after my Father's estate whilst he was hospitalised with Alzheimer's, whilst undertaking a Masters Degree and holding down a managerial post.  My GP thinks therefore that it might also be stress related.  I have been seeing a counsellor for a range of issues as they have come to mind and this has been helpful.  I still feel rough however.

I suppose that if this is viral or reactive, it will go of its own accord.  I can't wait!

[greg 38]

I just heard today from my LLD's office and they said I tested postive for Lyme.

IGENEX Lab in Cali tested me for Lyme using the western blot.

[Karuna]

Many, if not all of your symptoms can also fit the profile of some of the neurological complications of Varicella Zoster Virus (VZV) reactivation.

Despite the existence of a vaccination against chickenpox, in 2002, approximately four million cases of chickenpox occur annually.  After chickenpox, VZV becomes latent (dormant) in cranial nerve, dorsal root and autonomic nervous system ganglia along the entire neuraxis.

Virus reactivation, mostly in elderly and immunocompromised individuals, can produce shingles, Bell's Palsy - an attack of one of the cranial nerves (think Jean Cretien), postherpetic neuralgia, myelitis, and 'VZV encephalitis', all without necessarily presenting the usual rash.

(Recent Japanese research has linked Bell's Palsy to VZV.)

The more serious of these conditions can be detected with an MRI, but not all of them and not all of the time.

In our family, we can get chickenpox more than once, usually resulting in tinnitus.  Severe or prolonged high level of stress is usually the precipitating factor.  Bell's palsy, shingles, diplopia and muscle-wasting (in one case) have been linked to VZV.

Many of the symptoms of ALS can be present and come and go, depending upon the levels of stress, and can persist over periods of years.

Treatment has been antivirals, predominantly Famvir (famcyclovir).

One member of our family has had extreme stress, followed by shingles, followed by rapid onset and progression of ALS.  While suspected of some involvement, VZV has not been established.

For those wishing more information, a short but comprehensive review article on VZV has been published:  ANCR Vol. 2 No. 2 May/June 2002, p. 7+.

[dougcsd]

I would have to agree with Karuna.  VZV I believe is not diagnosed as often as it should be.  I have been dealing with issues on and off with this virus starting in 2002 when I had a bout of Bell's Palsy. It turned me into a hermit for a about a year (social life kinda dies down a bit). After, that I started to notice strange things from time to time that I attributed to "getting older" (I was entering my mid thirties).  Back pain, headaches, stiff neck, light headedness, etc that came and went.  All of this happened in times of stress, or heavy physical activity.  In later 2004 things got a bit worse and I found myself getting light headed more often and throwing up on my friends fishing boat in what I had previously considedered calm or mild seas. In 2005, I decided to try to get back into shape and started working out/playing volleyball.  The result was strange fevers and more pains etc.  This went on for months until I started getting stabbing pains in my ear and stiffness in my jaw.  I couldn't relate these pains to being older or working out.  I went to the doctor that had treated my Bell's Palsy and he said it was likely the VZV again and perscribed antivirals. He perscribed Famvir and all my symptoms (back, neck, head cleared up).  In fact that is when I discovered some mild sensitivity in my gums was related.  The same day I took the antivirals I got blisters in my mouth (a first) and my gums looked like I had been in a boxing match (especially near my canines).  After I stopped the antivirals the pains all came surging back (some worse than before).  At this time he perscribed Valtrex at high dose (1G three times a day for 14 days).  This worked and things stayed clear for a couple of months.  During this time I researched VZV a great deal.  I became concerned that there might be some underlying problem that was causing this.  After a couple of months, increased stress started to cause problems again.  I have decent insurance, and I called managed to get an appointment with the head of the infectious disease department at my local hospital.  I explained to him what had been happening and he agreed that he wanted to look for the cause.  I have been tested for Lyme and everything else he could think of, and all blood work shows me healthy as a horse.  He did discover that I have HSV2 antibodies, but I have never had an outbreak.  We discussed it and since I had cold sores as a kid we are guessing that the infection is oral.  At that time, I asked for long term antivirals, but he wanted to wait for another outbreak.  I started playing volleyball again this summer and the fevers and such started again right away.  I went in and was given a short term dosage of famvir (7 days) which cleared things up for about 2 weeks.  Then the fever came back and this time extreme back pain.  It radiated all the way to my foot.  I went again to see him and he ran another bundle of blood tests, and again found nothing.  He did however concede to giving me long term antivirals to keep things under control.  I now take famvir 500mg 2 times a day and I have not had any more fevers and most pains have resolved.  I do seem to have some residual pain in my back which after about 2 months appears to be clearing up.  I am thinking I may have suffered some minor damage to the sciatic nerve during the last bout.  I am probably going to go have it checked just in case.  But the point here is that most doctors when I see them with these problems without the accompanying blisters have a hard time attributing these problems to VZV type viruses.

[skidro]

A related discussion, Looking for proof? was started.