This was posted on the ALS forum, you decide

[ewford]

Hey everyone, can ya'll chime in and look at her symptoms to see if she needs to post here.  They look eerily familiar.  This is why I cruise other boards and look at others symptoms and try to get them to come here for advice.  You guys do great in helping.  I suggest you all do the same and help others if the symptoms fit.  So many are being missdiagnosed and we can help offer other solutions/treatments/diagnosis.

This is her post below.



Thanks for taking the time to read my post. Im very scared and alone. I would love to get your opinions on this. I make it in chronological order.

Late March:
- Pain in ankles on waking ( overlooked, I am overweight)
- Off and on vertigo
- Smell strange odors, others couldn't smell

Early April:
- Weird sensation in both legs
- Tingling, kind of numb like feeling in legs
- Stomach pains
- Weight loss
- Constipation
- Sharp pain in buttock
- Vertigo continues

Mid April:
- Came down with virus
- No appetite
- Severe abdominal pain
- GERD - started taking nexium'/ Zantex (little relief)
- Headaches
- Legs shaking/quivering
- Ultasound (normal severely constipated)
- Diagnosis- severe pain due to constipation. Prescribed meds--felt better for 24 hrs
- Also, very dehydrated.
- twitching in legs and shoulders blades only. (thought it was due to virus)
- Internal tremors upon waking
- Wake up out of breath


End of April:
-Cramping of right calf in morning
- Wake up out of breath
-Twitching of legs, shoulder blades continue
-Legs shaking constantly (especially upon standing)
- Pressure headaches
- Daytime sleepiness
- Chest xray (lungs slightly compressed due to "weight")
- Lung capacity test (okay..doc said due to weight)

Early/mid May:
-Internal tremors continue
-Pressure of head, nose, sinus area
-Twitching continued (no weakness yet however)
-Back pain
- Felt a loss of control of right leg for awile
- Xray showed C3-C5 forminal stenosis
- L5-S1 Degenerative Disc Disease.
- Electrical zaps in head- felt like the left side of head was splitting for the right side.
- Involuntary musle jerking ( right leg)
- Went to Sunnybrook ER for second opinion (according to them No forminal stenosis of cervical spine. Early sign of Disc degeneration in lumbar spine. I'm pretty sure is due to weight.
- Electric shock type shock through right leg. Had to dragged my leg around 1 night. That went away. Happened twice.
- Pulsating type feeling up right leg to knee.


Late May:
-Frequent headaches( from moderate to severe to cluster to complex) you name it, I had it.
-Internal tremors continue
- Feeling like a can't breath.
- Sometimes I can't breath laying on back or side.
- Stiffness in right calf
- CT scan of brain normal
- Twitching now spreads to stomach and back
- numbness of left arm (went away)
-Off balanced
- Fingers in left hand shaking
-Heart palpatations


Early June:
-Muscle aching
-Feeling unable to breathe
-Twitching continues (of course)
- Reoccuing palpable lymph node on back of neck
- Spasms and charlie horses on right leg in the morning
- Small twitching I can't feel seen on right calf
- Tingling of face (mainly on left side)
- Feeling off balanced
- numbness of left arm (went away)
- Dizziness

Mid June to Now:
- EMG said to be normal (have not recieved report)
- Twitching now on almost every part of body (arms, legs, calf, shoulder blades, tongue, face, kneecaps, lips,butt..even up my nose.
- Cramp of hands
- Pain in left hand
- Slighty atrophy in hand (could be in my head though)
- Dizzness. especially when sitting down
- Tingling of scalp and face. (very debiliating and disconcerting)
- Loss of appetite.
- Dirreaha (you really didn't need to know that I'm sorry) probably due to Natural Calm and that awesome time of the month!
- Swollen lymph node right side of neck.
- Fingers in left hand continue to shake.
- Feeling a loss of control in entire left arm
- slight pain in entire left arm.


I'm scared I might have some neurological problems. It started with a virus and progressed from there. I've been on boards for both ALS, MS and Lymes. Most saying i don't have it. I'm 22 years old and I'm scared I might die. I can't live like this anymore. I've been to at least 10 doctors. None of have helped me

[nutrinut_bob]

Just a few days ago the supposed cause of ALS was announced.  A genetic error that causes an abnormal protein to be formed by the cell's lysosome.  I could understand that at times it would indeed be a genetic trait.  Other times I'd have to think, once again, there's something in there creating that error in order to make themselves more comfy in their new upscale apartment.  That abnormal protein allows them to collect junk that your cell would normally dispose of.  I would think that if a mycoplasma is small enough to infect the mitochondria of a cell, that they're also small enough to infect the lysosome.  The answer to the problem is the same as it would be for an apartment manager who has a packrat to deal with, gotta evict them.

[brandycolwell]

oh wow, i think some lines were crossed. the first post is not by me. thats from someone else. my symptoms are not nearly as severe. i just realized that you guys all think those are mine.

[JackieCalifornia]

A comment above I just saw about Labcorp tests -- my Lyme doc used them as well as the IgeneX tests, and he's a very hardcore LLMD.  The Labcorp tests are not very precise, because they rely on reading your immune system activity, which is an indirect indicator of infection, compared to the IGeneX tests, which look for actual DNA of the Lyme bacteria in your blood.  

The LabCorp tests are imprecise at a level that most regular docs don't take into account, it seems, but my LLMD was (I think) checking on how my immune system was functioning as the treatment progressed.  But to rely only on Labcorp to *diagnose* Lyme is what LLMDs tend not to do.  Compare that to nonLLMDs, who usually look ONLY at LabCorp tests and base diagnosis solely on that.

So the LabCorp tests are useful, but a doc's got to know the test's limitations, to paraphrase Clint Eastwood.

I have not read complimentary things about the Quest Diagnostics tests for Lyme, but don't know what the arguments are.

Bottom line, none of the tests is perfect, which is why you need a savvy LLMD to sort out what's going on.

Wonko's right to mention Dave Martz's story.  He's an amazing guy:  a doc and an athlete (as I recall) who was told he had ALS ... but he didn't agree and went off to figure it out himself.  And he's fine today.

Oh yeah and I never saw the tick that got me either.  And I never got a rash  Many of us never ever do.  NonLLMD rely on that a lot, but LLMDs know better.

You hang in there!

[ewford]

Jackie and wonko/ree, thnx for adding info.  I knew I could count on you.  I'm finding these symptoms on alot of Neuro and AI pages.  I am PM'ing them to come here and get some help.  Thnx again!

Brandy.......ask as many quesions as you feel necessary, don't feel like you are bothering us.

[wonko]

Oh, and here is a link to a previous discussion on this topic:

http://www.medhelp.org/posts/Lyme-Disease/Is-it-ALS-or-Lyme/show/1257697

[wonko]

Anyone interested in the misdiagnosis of Lyme as ALS might be interested in Dr. Dave Martz.  His story can be found at the below link.  (He is also mentioned in "Cure Unknown" and featured in the documentary "Under Our Skin.")

http://www.lymedisease.org/news/touchedbylyme/372.html

[JackieCalifornia]

Greetings --

Sorry for what you're going through --

You sound like your spirit is strong, and that's excellent -- the question is what to do next.  You may wish to be evaluated by a Lyme specialist, if nothing else to try to rule it out as a cause.  Lyme however is spreading and the docs haven't been trained to recognize it, unfortunately.

The docs who are on the cutting edge are called LLMDs by patients ... it's not an official title, just one that we patients use to identify a doc who understands Lyme:  a Lyme-literate MD.

I understand that www [dot] chronic lyme disease [dot] com (take out all the spaces and replace [dot] with a period) has a referral function to help you locate an LLMD.  You can also just search online for 'louisville ky LLMD' (without the quotes) and you will find lots of hits, or try different geographic locators if you are close to other cities or states.  

In some states, docs are threatened with loss of their medical licenses if they do not follow the nonLLMD approaches, so they stay very quiet and don't advertise themselves.  But with a little snooping around, you can find them.

Lyme is not a simple disease, and it affects many bodily systems, including many that you mention having.  Stay strong, and keep going!

[ewford]

  jackieCalifornia is a very informed poster here, she will come along and hopefully post shortly.  Meanwhile read some of the other posts here.  Just to let you know, the Labcorp tests for Lymes are very poor.   IGENEX Labs are much better at looking for the diff forms of the bacteria.

[brandycolwell]

well, i may as well have the doctors look into this..lol i make them look at everything else. with no help might i add.

  are there any reported cases of Lyme causing my sort of symptoms? stiff neck, hard to turn, kinda has little jerks now and then, my arms and legs really shake like they are strained, but no obvious loss of strength..they just shake when i lift them up. all the millions of muscle twitches, they come and go, but no muscle is spared. my tummy, legs, arms, everywhere. my symptoms are constant, never goes away, other than some relief of twitches i think due to starting Mg.. i should add that i found out im hypo thyroid, low b12, low folic, low vit D, low blood sugar, but...i have it all under control now, and all is still the same. im so confused, my doctor is just sayin i look healthy, well, i feel like hell..so whats that count for.

i really appreciate anyone who takes the time to read this, im at a loss for answers. i should add that i never remember being bitten by a tick.. i forgot (that happens a lot) to add that i have headaches all the time, and heart palpitations, for no reason..im not stressed when it happens, but they do happen way more if i am.

thanks in advance :)

[ree427]

Sounds like Lyme is very possible. She should definitely be throughly evaluated. I don't know what else would cause such an array of symptoms at such a young age.

[ewford]

  This was her reply to me


"i need your help! i am not diagnosed for over 8 months, and i have the same symptoms. i started taking Mg, the twitches have stopped!! almost completely. i have low b12, low folic, low vitamin D, the bottom of my feet burn for no reason at all.. my upper legs and arms shake when i lift them unsupported. does this sound right?? "