Possible Diagnosis

[stacy]

Hello all, I'm new so bear with me. Nov. 1st I began having fasciculations in my right tricep (almost continuous at first) I was'nt really concerned because I had been doing a lot of heavy lifting arond the house landscaping and thought I had strained something, however after 1 week and still no let up I went to see a doctor and referred me to a neurologist. After a complete physical which I passed with flying colors he ordered a EMG. The EMG came back bad; sharps, fibrillations etc... in my right triceps and my right anterior tibia. I asked about ALS but he seemed very reluctant to talk about it, however he said that it could'nt be ruled out. I went to the University of Minnesota Fairview for another opinion. I had another complete physical which I passed with flying colors, but when the neuro saw the results of my previous EMG he said it could only be two things, either als or a virus. He said that a virus was highly unlikely. It has been over 2 months and my triceps do not seem to be fasciculating as much as in the beginning, however the symptoms have spread to my left arm and ocassionally in my legs. Also whenI flex my triceps hard or do push-ups they will fasciculate wildy for 30 seconds before they clam down. I have no weakness, atrophy, or coordination problems as of yet. I am a 37 year old man with 3 kids (13,2, and 4 weeks) and I'm scared to death. Please help. Thank you, Stacy.

[upila]

Hello Stacy,
My father was diagn with ALS a year+ ago based on same symptoms. Just now, he also tested positive for Lyme disease (which is a VIRUS caused and treatable). Lyme mimics many of the symptoms ALS has.
It is very important to catch Lyme as early as possible: so do yourself a favor and request from your doctors that they do a Lyme test. If they do not go along, then FIND one who would.
Best,
Upila

[rcharlton]

[quote:08619892d1="stacy"] I have no weakness, atrophy, or coordination problems as of yet. [/quote:08619892d1]

Hi Stacy,

I'm a 38 year old male who was diagnosed with ALS last summer - so I know how you feel - although I do not need to worry about looking after children - which is a mixed blessing.

The problem with ALS is that it presents itself differently in practically every PALS. Symptoms, progression etc. vary drastically across the board - there is no "typical" case.

The fact that you do not have any weakness, atrophy or coordination problems so far is very encouraging. When I was diagnosed I had weakness in both hands and noticeable muscle wasting in my right hand and arm.

I would definately follow up on Upila's advice and look into Lyme disease - and start getting as many opinions as you can. Check out this web site http://www.wrongdiagnosis.com/ - but remember to take everything you read witha grain of salt.

Even if it turns out to be ALS - younger males with limb onset "typically" have the longest survival rate I'm told - 10-15-20 years - and I'm sure that there will be some treatment by that time - so just hang on!

Good luck.

Richard

[TBear]

Hi Stacy
I understand your fears. From my experience, ALS is usually diagnosed after NOT finding anything else on the EMG's or MRI's or nerve conductivity testing. I hope that this is a false alarm for you but if it's not, keep us updated.

CHeers

T.

[Meg1]

Stacy --

A third opinion is definitely in order and I strongly advise you to get that third opinion from an ALSA-approved ALS center. The doctor at the ALS center will perform another EMG as well as other diagnostic tests. These ALS centers are located around the country, usually in connection with a university medical school, and they diagnose and treat a lot of ALS. An EMG is only as good as the doctor who performs it and I would not trust an ALS diagnosis from a clinician who didn't perform his own EMG.

As for lyme (a bacteria, not a virus, BTW), the symptoms of lyme are really nothing like ALS symptoms and an experienced ALS physician should easily be able to tell the two apart. Also, it's been known for ten years or so that a number of PALS test positive for lyme, particularly if that test is performed at Ignex labs (which is under investigation for its extremely high number of positive lyme test results--draw your own conclusions).

Whether the positive blood test results are an anomaly, a hoax, or if ALS is an untreatable form of lyme disease doesn't seem to matter. I have never heard of a PALS who regained any real function after diagnosis of and treatment for lyme disease and I have investigated many of these reports. Once ALS has been reliably diagnosed--at an ALS center, I mean--antibiotics won't cure it. But that long-term antibiotic therapy so loved by self-identified "lyme literate physicians" can make even an otherwise healthy person feel pretty ill, may disrupt his immune system and can subject him to additional antibiotic-resistant infections while he's getting the "treatment." Additionally, it's not uncommon for the PIC lines favored for IV antibiotic treatment to become clogged, grow fungi or become otherwise infected.

Frankly, I think there are a lot of unscrupulous doctors out there who know that patients with terminal illnesses will try anything, and they make loads of money prescribing useless antibiotics for exorbitant fees.

You can find an ALSA-approved ALS center at the following site:

http://www.alsa.org/community/article.cfm?id=638

Good luck.

[Al]

I tend to agree with Meg1. Another round of tests is in order. I'm not too keen on a Doctor looking at someone else's results to diagnose you. I too had some experiences with probable operator error on the nerve conduction and EMG tests. I'd find a clinic or a Dr. that has experience in ALS.
Al.

[A Daughters Love]

Hi Stacy,
I agree that it's very important to get a 2nd and 3rd opinion. You will find that there are many different opinions on this forum as to what you should and shouldn't do. I beleive it's very important to follow you own heart. If it's telling you do do something, be cautious...... but follow it. This disease can leave you feeling very powerless, and sometimes trying new or different things can give you a sense of control. They may not work, but I know trying different things has really helped my Mom feel like she is doing all that she can. Even though she has stopped some of them, she doesn't regret them. She didn't break the bank doing them either!

Have they talked to you about a muscle biopsy? This is very common from what I have been told for diagnosing ALS. My Mom had one after her first EMG.

Take care,

[dana]

Meg1 stated "the symptoms of lyme are really nothing like ALS symptoms" which is actually not true. There are many similarities. My dad was told that they couldn't rule out ALS, just like they told you Stacy, and he also tested positive for Lymes. Only God knows what he truly has, because from our experience, the doctors do not know much about ALS, or what to do with it. I agree with Upilia...have a Lymes test done. It woudn't hurt. Do what your gut tells you to do. If you want to rule out everything, and go through the tests, by all means do it. If the Lymes test come out positive, then you have some choices to make as to how you want to treat it. I do agree with Meg1 that there are many people out there who will try to take advantage of your money, but there are some honest people out there too who just want to help you out. The hard part is finding the good guys. Best of luck to you and your family.
Dana

[Suzanna]

While there is no definitive test for ALS, I too was DX based on the EMG. My neurologist diagbosed 3 people in ! week, whereas he normally does 3 a year! The other 2 were older men60's and me 38 yr old female. He is baffled by this as I asked if there was any coralation w/ demographics etc. They don't know. I stepped on a sewing needle had surgery, they said the ALS had gone to my foot and I would always need a brace. Last week I saw the same Dr.I was wearing my high heeled boots walking fine! :wink:
Again why so many new cases 3 in 1 week compared to 3 a yr is a vast difference...........what is going on?
Now I take the Dr's advice w/ a grain of salt, and trust my body.
As i told the Dr. who said my foot would lag forever "Vanity will get me through this"
Good Luck,
Suzanna

[Meg1]

It is a myth, perpetuated by doctors with very lucrative practices and no scientific backing, that late-stage lyme disease mimics the symptoms of ALS. I'm sure you can find websites that contend that lyme disease and ALS have the same symptoms, but consider the source. ALS symptoms, as we all know, are weakness, fasciculations and atrophy. Here are the NIH's symptoms of late-stage lyme disease:

Symptoms:
joint inflammation in the knees and other large joints
chronic arthritis
memory loss
mood changes
sleep disorders

Additional symptoms that may be associated with this disease:
numbness and tingling
consciousness, decreased
confusion
abnormal sensitivity to light <end quote>

http://www.nlm.nih.gov/medlineplus/ency/article/000625.htm

Does that sound like ALS to you? How likely do you think it is that a person with only Lyme disease would experience none of the symptoms listed above and would have an EMG consistent with ALS? Some doctors will tell you that it happens all the time. Those same doctors will try to sell you expensive office visits and treatments that only they can provide.

Caveat emptor.

[rcharlton]

[quote:4043e3370d="Meg1"]It is a myth, perpetuated by doctors with very lucrative practices and no scientific backing, that late-stage lyme disease mimics the symptoms of ALS.

Caveat emptor.[/quote:4043e3370d]

Hi Meg,

It's good to have you on this board. I recognize you from some of your posts at brain talk communities and welcome all your insight and info.

So welcome to our Canadian forum. For some helpful background on us Crazy Canucks you should note that things in Canada are a little different than in the States. In Canada, doctors do not have the same profit motive as they do in the States. That's one of the benefits of a publically funded health care system. There is rarely any incentive for a Canadian Doctor to recommend unnecessary procedures or treatment - actually our problem is usually the reverse - in Canada it is difficult to get procedures and there are often long waiting lists. In the States, I expect that you can find Doctors to give you any procedure you want at any time as long as you can pay for it.

A Canadian PAL could get a opinions from a dozen doctors and it would not cost them a dime - other than our regular contributions to the health care system. So your "caveat emptor" comments are not really relevant in Canada because we are not paying for medical services directly.

I also am not aware of any way for a Canadian doctor to directly benefit from prescribing medication - so there is also no reason for a Canadian doctor to recommend or prescribe unnecessary drugs.

Even though our Canadian Medical System has a lot of problems with it, at least I've never had to worry about whether or not a doctor was recommending a course of action just to make a buck. Related to this, I expect that in the states, there is some conflict between conventional medicine practitiones and alternative medicine practitioners - each going after the same pool of money. This is again different in Canada, as there is no loss of money to a conventional practitioner if a patient is looking into alternative medecine treatments - their only concern is for your well being. And the alternative practitioners argument that conventional medecine is recommending unnecessary costly procedures to make big bucks does not apply in Canada.

Pardon me - I was just having a patriotic moment.

[Meg1]

rcharlton, I thought I'd seen you over at BT. Thanks for the primer, but I'm well aware of how the Canadian health system works. I must say, though, that my Canadian friends are not nearly as complementary of their health care as you are. A number of years ago a good friend's father died of a brain tumor waiting for the Canadian health care system to schedule an operation and treatment. He probably would have died soon anyway, of course, and may have saved himself some suffering, but the family was very unhappy with the slowness of the system.

I've noted from posts here that Canadian doctors who, as you point out, aren't motivated by profits, pretty much don't diagnose and treat late-stage lyme disease. The discussions here, and elsewhere, about ALS and lyme involve US doctors. Which proves my point, doesn't it?

[TBear]

Hi:

I've been through the ALS "program" from start to finish. My wife was diagnosed in 1997 and passed away in 2001. From inital diagnosis in September 1997, to confirmation in October of 1997 through the admittance to the ALS Clinic in November of 1997 and the palliative care required in 2001, I have found the health care system to be responsive to both my wife's needs as well as my family's regarding dealing with her illness.
It is indeed popular to crap all over our socialized health care system and maybe we don't have instant access to the myriad of testing that is available elsewhere, but when I needed help I got it... immediately... at the right price. It may be less a comment on the system as it is a comment on the dedication to the health care professionals that we were dealing with but if we had to play at this game, I'm damn glad it that happenned here rather than somewhere where else.
... maple syrup running in my veins today!

Cheers
T.

[dana]

Meg1-
You left some of the symptoms out that describe Lymes diseas (I took these from the site that you listed):
speech impairment
numbness and tingling
muscle funtion/feeling loss
lethargy
fatigue

I know that my dad has all of these symptoms, along with some of the others that you listed before, and some of them I see as ALS symptoms too. I do see the similarities. To be honest with you, I do not know if my dad has only ALS, only Lymes, or a combination of the both. Either of those choices suck and I wouldn't wish them on anyone. If I could have my choice of that bunch though, I would choose for him to only have Lymes. It has been said that Lymes mimics other diseases. I could only hope that it is mimicing ALS with my dad. As for the money hungry people/doctors...I feel the same way you do. It drives me crazy to think of someone trying to take advantage of my dad's money, especially since he is sick. I know that you really have to watch for people like that. I don't think my dad's docs are taking advantage of him right now, but I guess it is all how you look at it.
Dana

[Meg1]

Dana, I'm sorry about your father and I certainly understand why anyone would want to believe a loved one is suffering from a treatable, rather than an untreatable, disease. And that's what unscrupulous docs who diagnose ALS patients with things like lyme disease count on--that fervent hope that it's really something else.

I just wanted to point out that the symptoms you say I forgot were not left out on purpose. They are listed by the NIH as symptoms of EARLY lyme disease, not the late-stage neurological lyme that is typically diagnosed in ALS patients.

[gapwedge]

Good thread here.

I'm six months into this journey and am also skeptical about the Lyme stuff... but with a twist. My ELISA screening was negative, and I'm getting immunoblot [Western Blot] shortly. If both these tests come up negative, that's as far as my Neuro will go with this.

The other reference test, for Borrelia Burdgorferi, by those other two labs - Bowen Research & Igenex - looms out there, but the mainstream med community doesn't accept their results. My Neuro already said he won't request this test for me and "wouldn't even request it for a family member, Tom."

But my lingering questions are these...

What about the concept of "Chronic Lyme?" Seems there's a debate about the very existence of longer term form of classic Lyme that could lay dormant for years... dubbed "chronic lyme." Is there any credence to this?

To me, the als community's hopefull fascination with this seems to be two fold 1) is if such a condition - chronic lyme - is possible, and does exist, could it alone be what has manifested itself in certain people who've been clinically diagnosed with ALS?, and 2) or alternatively, could it be possible to have both chronic lyme and als, and if so, could that AND should that warrant new long term treatments with Ceftriaxone and other lyme drugs already thought to be potentially helpful for ALS anyway.

So, while I doubt a Negative with ELISA, Negative with Western Blot, but Possitive with Bowen or Igenex means the person doesn't have ALS, I'm also not convinced the evidence of Borrelia Burdgorferi they turn up is bogus... and even more importantly, with Ceftriaxone and other Lyme treatments actually believed to be "potentially" helpful for ALS by the mainstream ... unrelated to Lyme... you can't blame pals for looking to these alt Lyme tests, or the existence of chronic lyme, as a potential avenue of access to the "potentially" helpful treatments.

Tom

[gapwedge]

PS. The ALS Therapy Development Foundation now has a researcher who answers questions on their forum and is very open, honest and by no means tied purely to mainstream beliefs.

He has responded in depth to essentially the same Chronic Lyme questions I raised above. The thread is here:

http://www.als.net/forum/topic.asp?TOPIC_ID=438

His name is:

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

[kneecey53215]

hi. sorry to hear of your fathers diagnosis. how is he doing now if i may ask?

i was wondering what state your father lives in?

[quote:579cf6afbf="upila"]Hello Stacy,
My father was diagn with ALS a year+ ago based on same symptoms. Just now, he also tested positive for Lyme disease (which is a VIRUS caused and treatable). Lyme mimics many of the symptoms ALS has.
It is very important to catch Lyme as early as possible: so do yourself a favor and request from your doctors that they do a Lyme test. If they do not go along, then FIND one who would.
Best,
Upila[/quote:579cf6afbf]

[upila]

Hi,
Sorry - did not see the post earlier.
Very wooded part of Vermont.
He is doing well, considering first sympt. go back to 2003, ALS diagn 1+ yr ago, and Lyme test positive this Dec,2005.
The hands and left foot have been the most affected, i.e. thumb/index fingerst very weak with muscle between wasted. Can still use hands, 100% self sufficient, but not for fine movements/holding, turning. Strength there, but the two fingers are too weak, almost useless. Walking is OK, but right leg is favored, due to weaker front muscles on the left leg. Everything else is ok. He started on oral antibiotic 2 days ago, after we say the Lyme dr. (drug from the Rocephin family). At this time, we decided on 1/2 the dose until we are comfortable increasing to full dose. He continues to take all the other supplements he has been taking for the past year. Modified the diet to almost completely eliminate everything "starchy or sugary," even though he had been off sweets for a year (occasional temptations...). So, that's it so far. Will post in few weeks when we can ascertain any results from the abx. At this point, we do not care to ponder any longer is it ALS, is it LYME, is it both: going ahead with what we thing we should do ourselves, fortunate enough to have the help of a considerate doctor willing to work with us - so that's the plan. I read everything out there, all forums, experiences and at the end of the day, try to reason and apply to his actual symptoms, responses and possible course of action. For example, since starting the antibiotic, his fasciculations have increased - where prior to, they had subsided natably. So, what does that mean? I have no idea - will look to find some data. Will ask, if anyone else has had these experiences on the Lyme forum.

[rcharlton]

Upila,

I'm sure you've seen articles like the one below re Bowen:

The Bowen Q-RIBb is not a US FDA approved diagnostic procedure. Some concerns have been raised regarding the 100% positive results found in the Q-RIBb testing. The Bowen web site attempts to address this issue, "All of the patients submitting specimens have clinical signs and symptoms of Lyme disease. We feel the explanation for the positive specimens is that this is no longer just a tick-borne infection. Bb has been found in dogs, cats, Florida and California mosquitoes, well water, breast milk, placental tissue, seminal fluid, and even African dust. It seems reasonable that everyone has been exposed to this very clever bacterium, and some individuals without symptoms may represent a carrier state of Borrelia burgdorferi."

Do you have more info on the 100% positive results?

Richard

[gapwedge]

The head treatment investigator for ALS TDF answered some specific questions of mine about the possible existence "chronic lyme" and the reasons WHY igenex and bowen's test results are appearently not recognized by mainstream md community.

See this:

http://www.als.net/forum/topic.asp?TOPIC_ID=438