NEVER TRUST A NEUROLOGIST

[MrsAristotle]

I have been looking through all my paperwork. I still cant find my MRI results etc but have found several letters I mislaid.

The first one I found was from the neurologist when I saw him privately to my GP and have never read this. Now I couldnt afford to have all the tests done privately so he asked her to refer me to him on the NHS which in England means I get my tests etc free. Now I am convinced IF i had the insurance and could pay him privately i would have been diagnosed I am sure of it.

Anyway. Where was I oh yes, never trust a neurologist. Well he told me later that he wasnt looking for MS at the beginning and that my symptoms never pointed to any demylinating events.....

He also told me that my symptoms were non specific for MS.....

OK so why did he write this then:

On Examination. Her blood pressure was 200/90 (she apparently has white coat hypertension).  There is blunting to pinprick and to light touch over the left trigeminal nerve distribution, as well as the left upper and lower limbs.

Rinne's test is equal on the left and Weber's lateralises to the right side.

From history it would appear that she has had two clear episodes of AMAUROSIS FUGAX six years ago whilst on holiday in Brazil and one episode when she returned back to the UK.

There has also been clear history of blepharospasm which she described and has occurred on more than one occasion.

I believe her urinary symptoms reflect a neurogenic bladder.

There is sensory disturbance of the trigeminal nerve, but on my examination also a unilateral sensory loss.

DEMYELINATION WOULD explain these symptoms and I think it would be worthwhile imaging the neuraxis with MRI.  I have talked to her today simply in terms of inflammation.

As she is not insured and couldn't afford the extensive investigations that may ensue please can you refer her back to me as an NHS patient.

END OF.

So from day one he was looking at MS.

I would point out that the episode of AMAUROSIS FUGAX was proven to be from Optical Neuritis in 2000. I had it bilaterally and can prove it as I do have that one letter confirming it. Also I described the AF as shutter/curtain which is apparently rare...ALSO i found out by googling that any incidence of AF should be thoroughly investigated but when i saw my doctor with the symptoms in 2000 he dismissed it as maybe low blood pressure or the heat.......I KID YOU NOT.

The blepharospasm I didnt know what they were called, but quite often I have had to endure days or hours of my left eye moving and fluttering in spasm and was told it was just me being tired.

The problems with my trigiminal nerve at the time was mostly paresthesia. I had the weirdest things going on my face, lots of creepy things large tarantulas, pins and needles and stuff lol.

Now on my first MRI which I paid for it clearly states there was a large cluster of high signal foci in the deep matter of my brain, but the radioligist stated he didnt think it was demylinating but more probably my AGE.........

Since then i have found out that HIGH SIGNAL FOCI in deep white matter of brain do not show up age thats rubbish.

So was this high signal foci, my first episode of MS?

Also later when i had another MRI of the head I was told it was CLEAR...did that mean then that the high signal had gone?

Why cant they be honest with us.

He was looking for MS and I believe he has found it, but for some bizarre reason he cant tell me.

I look at all the history and it matches.

I just dont get it.

I found too in 2003 October - April 2004 I was off work for 6 months with a really bad urinary infection and what they thought was some weird viral thing. My symptoms were : fatigue, UTI, pins and needles, odd pains and stuff and burning eyes and pain in the eye. In 2004 September I was diagnosed by optomotrist with dry eye, because i couldnt open my left eye in the morning especially when i was hot, it was like the muscle had gone, and he didnt understand why, but thought it was dry eye. Well now I know in 2007 i was diagnosed with ON and I believe in 2004 this was another episode of it from 2000.

From 2004 to 2006 after going back to work i found medical information that I was going to the doctor with weird things, balance problems, pins and needles in my legs (told it was my medication), fatigue, heat intolerance, clumsiness and so on and so forth, until ~September 2006 when I went to a car boot sale and could hardly walk, as both my legs were in spasm and I could not put one foot in front of the other, and had to come home.

The next day 11th September I couldnt get up or walk and the rest is history.

From 1981 had pins and needles in my left arm for months, told it was smoking.

In 1982 after a year in Kenya I had fatigue, myalgia, and pins and needles, and was told i probably had brucellosis from drinking untreated milk.....even with a negative test result. I cant find any medical report which says that this was cleared or given medication for.

~From 1982 to 2000 I constantly went back to the doctor with the same things.

Urinary infection
periods of fatigue and pins and needles and feeling OFF. ~Told viral...
Pain in my right ribs

Overal these episodes seem to occur around every six months and lasted a few months.....

To be honest reading through some of my notes i think i am a NUT JOB, the amount of times i went back for the same things to be told it was viral..or .......stress.

I even found a vault smear that had gone from a Grade II to a grade 5 and no one bothered to tell me I might have had some fungal infection going on.

I also found out that my bone density scan when I was 50 came up with osteoporosis....no one told me that. Thank god the one I had 2 years ago showed it had downgraded to ostepena in the same area, because I am healthy and eat well, but no one told me.

So I am putting all this together.

Oh yes from 1990 every urinary sample showed STERILE PYEURIA. The specialist didnt know why, and one even accused me of lying about my pain med intake said basically he thought I was lying about how often i take pain medication because that would fit me having so many tests showing up SP. OMG i could hit someone. I never take pain meds...so basically his letter stopped any further investigation.

So here I am then, ready for a fight lol.

Cant wait to go to the clinic, so I can start again and see if they can find out the missing link, but as i am paying for it, they better had been honest with me.

I am getting worse and worse, and life is now harder for me. How sick do i have to be for someone to sit up and take notice, or tell me i am a nut job. I dont care quite honest if that is the diagnosis then cure me lol.

I am 60 what life do I have to look forward to? Just sitting on my recliner like an old women waiting for god.

Sorry for my weird rant, but i am just so fed up right now. I want answers not to be lied to.

Big hugs. Mariaxx

[MrsAristotle]

To Niko and Ricobord. Thank you so much for your invaluable input.

Niko that article about glutin is amazing and would make a lot of sense.

I am sure glutin makes MS symptoms worse, i am trying to go as free as i can, but when i slip i get symptoms back that go when I am free of it.

If that makes any sense. xxx

[TheLightSeeker]

Hey Ricobord,

One of the greatest Principles that I use in my daily life, is actually
one of the Principles of Manifestation :
"Honor Your Worthiness to Receive".
This pertains to among other things, Health, Wellness, Wisdom, Joy, Love and Peace.
And naturally, this works for me (it can work for anyone) as I now live from my Higher Self, and I acknowledge all this with deep Gratitude and Appreciation.
I am very happy for your successful treatment and improvement so far,
as I truly enjoy giving to others the opportunity to explore more viable options for better health and wellness, in the spirit of love and service.

There's a huge shift in Consciousness taking place as you are reading
this post. Our world is changing rapidly, the medical establishment is becoming vulnerable to all the exposure of the controversies, the secrecy,  the dirty politics and the power games.
Modern communications, social media and the Internet are setting the foundation for a new collective energy, a new dynamic that will serve humanity much better in many fronts, including health care (our God-given right to better health). It is just a matter of time!
The day you are looking forward to, might be just a little closer.
Our active participation will ensure it!
Blessings!
Niko

[Ricobord]

Yes, I remember you... You were the person who so bluntly told me that most Lyme blood tests were too inaccurate to be useful and you recommended IGeneX.  

Thank you!! I appreciated the direct reply. I kept holding out hope that a "regular" doctor would diagnose and treat me.  But enough people said "Do it!" to convince me to go the IGeneX and LLMD route.

Spending the money on the IGeneX tests was the best money I ever spent. It was the only way to get on track for treatment so I could get my life back. I am 4 1/2 months into treatment and greatly improved. I am still in a bit of shock over the controversy.  My faith in the medical community is greatly reduced.  I believe many of them are sheep or lemmings who follow only what they were taught or what the ivory tower researchers tell them.

I look forward to the day that very few people develop late stage Lyme because doctors catch it sooner, and that those who do get full treatment until they are well without having to fight for it.

,

[Ricobord]

Mrs Aristotle - Yes!  Many have this belief that you have to frequently walk through tall grass to pick up a tick. I have heard stories of people getting one while walking on a sidewalk in a suburb. I am so glad your daughter found it and got antibiotics.  Here in the US many doctors won't even give abx for a tick bite unless you have a rash.  AARRGG!! What about the people who don't get the rash?!

I don't know what symptoms you have, but odd fevers, joint or muscle pain, and frequent UTIs are all on the symptom list.  Have you seen the Burrascano checklist?  It was very helpful for me in figuring out I had Lyme.  If I hadn't found it and just depended on doctors, I would still be a basket case! I went through 12 and was only diagnosed after I went to the LLMD.  

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Yes, you can test negative and still have Lyme.  This is a huge problem for people whose immune systems didn't get the memo on how they are supposed to behave. LLMDs estimate that up to half of their patients did not test positive according to the CDC surveillance criteria.  They contradict themselves, saying that you should follow their strict criteria, but then they say that negative cannot exclude Lyme.  A Western Blot test that show multiple bands (more than are considered for the CDC surveillance criteria) helps in a diagnosis, because even if the official result is negative, showing Borrelia specific bands helps in a diagnosis.  Some people's immune system are so suppressed, they're just not producing enough antibodies to show up on the test.  This is why it is ultimately a clinical diagnosis, which requires a doctor experienced in the disease.

I tested negative on a blood screening test and a CSF test. I finally showed Borrelia specific antibodies on the IgM portion of the Western Blot at IGeneX, a specialty lab in California.  I also tested positive for Bartonella there, a common coinfection.

[TheLightSeeker]

Hi!

Ricobord, omg! we share the same ideas!
I've telling people this for years.
Last year we had exchanged views on a couple posts.

Mary, Lymes is a possibility, as it can mimic so many other diseases
and you have the enviromental factors along with the symptoms and signs
I'm not familiar with this LLMC you speak of.
Look into immed.org and IGeneX Labs, (for comparison purposes) to see how they proceed in Lyme DX and treatment, as they are the golden standard in Pathogenic Infectious Conditions that are difficult to detect,dx and treat.

As I was checking out a newer test for gliandins, I came across this:

Norwegian researchers identify gluten and gliadin antibodies as possible mechanisms in multiple sclerosis.
Antibody levels indicative of gluten sensitivity but not celiac disease

As part of their search for possible causes of multiple sclerosis (MS), a Norwegian research team analyzed the presence of certain antibodies—including those against gluten and gliadin—in the blood of patients with the condition.

The researchers investigated the presence of IgA antibodies against gluten, gliadin, lactoglobulin, lactalbumin, casein, and ovalbumin, as well as the presence of IgG antibodies against gliadin and gluten. The study population included 36 patients with at least two worsening episodes of intermittent relapsing MS and 26 control patients with no evidence of MS.

In the patients with MS, the researchers found “highly significant increases” compared to controls in the number of IgA and IgG antibodies against gliadin and gluten. Specifically, MS patients had levels of gliadin (the major offending peptide in wheat) that were five-times higher than levels seen in the controls. Similarly, levels of gluten antibodies were four-times higher in MS patients than in controls. None of the study participants had increased levels of transglutaminase antibodies (a marker of celiac disease).

The researchers noted that the increased antibodies against gluten and gliadin in MS patients “may indicate a possible increased gut permeability to certain proteins.” In addition, they note that IgA antibodies against gliadin and gluten “have a high affinity for the blood-brain barrier vasculature, probably altering the permeability of this barrier.”

Reichelt KL, Jensen D. IgA antibodies against gliadin and gluten in multiple sclerosis. Acta Neurol Scand. 2004 Oct;110(4):239-241.


There's no thing such as coincidence Mary!
The antibiotics most likely have a  temporary
bacteriostatic effect on the pathogens, responsible for the nervous system
impairement (infection and inflammation).
Cheers!
Niko

[MrsAristotle]

Hi can i ask can a simple lymes test be negative but positive? I ask because mine was negative, but some of my symptoms would make sense to Lyme.

I am actually seeing a Lyme literate medical centre 24th May who do a barrage of tests for Lymes.

I would certainly not be surprised if i had Lymes. I used to fish regularly up at lakes with sheep and deer running about, and I would walk through long grass to the toilet block, and sit for hours on the river bank. I know that a human can easily be bitten by a tick and never know it. My daughter recently for example came back from Sweden where Lymes is prevalent. She never once went into the woods as she was scared to get bitten by ticks, but her partner did as he took his brothers dogs for walks.

When she came home the second day she was in the shower, she felt something on her back when washing called her partner and there was a large fat tick in the middle of her back. She had no clue to it being there.

She went straight to the doctor who took if off and put her on a course of antibiotics.

So like i said i would not be surprised if i had not been bitten at some point.

I did have odd fevers, and aches (thought it was a flu without the cold), and I used to get pain in my knee, and I did loose my memory in 2007 for 3 hours and I have read that this is a typical symptom of early lyme.

I tell you something i do find odd. When i take antibiotics for one of my many UTI, i always feel a lot better neurologically lol...perhaps just coincidence.

Anyway i am going to the experts just to double check.

I think your posts are excellent thank you.

[Ricobord]

I am convinced there is a great deal that is not understood about the nervous system and why different people's systems can vary so much.  The medical world is very hierarchical and status oriented, with neuros near the top of the pecking order. The field just seems to attract egotistical elitists who don't want to admit there is so much they don't know.  In the waiting room for my first appt at a prestigious teaching and research hospital, 2 different neuros had temper tantrums in the waiting area in front of patients!  What a pair of divas!

I was lucky in that my first neuro was quite humble, friendly, and open to ideas and suggestions. He never suggested my symptoms were caused by stress or a psychiatric issue and he did a good workup.  My second neuro falls into the category of "jerk".  She took a very poor and limited history, came to abrupt and incorrect conclusions, and didn't have any interest in taking on my confusing case.  The third one was very kind and helpful.  She is the MS expert who is completing my neuro workup so that I will have an expert opinion saying I do not have MS. None of these 3 were able to diagnose me with what I actually have (Neurologic Lyme).

I think too many doctors are stuck in the rut of whatever they learned in Medical School and are too quick to write off mysterious symptoms to stress, depression, anxiety, or mental issues. Which is totally inappropriate given that they are not trained psychiatrists!  These same neuros telling us to take antidepressents for our neurological symptoms would be highly offended if a psychiatrist diagnosed a patient with a neurological disease.

My faith in the medical world is much different than it was a year ago. I no longer assume a doctor will believe me and will do the right thing.

[techiemom64]

Hang in there and stick to your guns, (so to speak) dont let the doctors or medical field get you down! They are after all only "practicing physcians"
It is very frustrating when they are not honest and upfront, yet they expect a patient to be completely honest and upfront! I hope you find answers and solutions that make your life better! Hugs!!

[Valkyrie568]

After  reading some of the obnoxious BS that Neuros have written in the notes of both my husband's and dad's notes, I have a very difficult time trusting a Neuro or any other doctor. It seems to me that the trustworthy ones are few and far between.

I really hope that you are finally able to move forward in your Dx and treatment with this new clinic!

[tjlmoo]

Maria,
You are definitely a patient and lovely person.However, it seems as though you have enough info to move forward with this as Jibs and Barb have suggested.New MS specialist is indeed what you need.

Maybe print out what you posted and take that with you along with all the other things needed for appt.

I will be lifting this matter in prayer to the Lord.  I know when one door closes another one opens and I agree that you have been in Limbo way to long,
It's time for you to get answers and closure! ASAP!

Let us know what you decide and know that we are behind you all the way with prayers, boxing gloves etc.LOL:)
Hugs and blessings.
Tammy:)
PS: How is the healing with oral/teeth surgery?

[jibjen]

SOB-

Why I outta...I agree with above..can we go to someone else? I know you have been suffering way to long..Can we?

Take out the boxing gloves and go for it!

Jibs

[Sidesteps]

It does sound to me like you have been in limbo-land for the wrong reasons. I know you have had a lot of frustrations and dropped dx due to the processes....is some of this due to insurances? can you go back to your doctor and ask for another referral under the type of insurance that would cover those tests. It really sounds like you need a competent MS specialist ----and yes, I think unfortunately insurance plays a HUGE part in all this. ***** big time!

Put on your stubborn belt and go fight! (Haha! I just realize Niko and I have differing fighting stances. I love diversity!) :)

[TheLightSeeker]

Hey Maria! Good Afternoon (UK time!)

With what you've gone through, I would be a "basket" case!!
Wow, how did you manage to endure all this?

In Western Medicine, MS is incurable. ( You know my views on this)
A concrete cause has not been identified.
Some suspicion of infection from viral, bacterial, fungal or "other" pathogens, but medical science and research stops right there.
Pharmaceutical companies pick up the "slack" by developing drugs
to help manage the MS symptoms and limit or arrest its progression.

A.
I can liberally state, that the REAL cause is  a lack of cellular energy,
as this is the root cause  of ALL diseases.
And what causes this lack of energy?
A weakened immune system!
The strength of your immune system is the key.
It determines the frequency , the severity and the duration
of various infections, which over time can deplete the body of oxygen,
creating further imbalance and energy deficit.
Once, the imbalance spreads, the untreated infection(s) take over entire organs or body systems (systemic infection).

B.
Many other secondary possible contributing/causative factors synergistically  contributing to the imbalance:

1. Stress!!! Grossly overlooked by Doctors and patients alike.
2. Toxicity!!! Another grossly overlooked factor.
3. Viruses, Bacteria, Mycotoxins, Parasites and other Pathogens.
4. Physical trauma and injury.
5. Psychological trauma and Emotions.
6. Low PH levels(acidic), diet, food intolerance/allergies  /sensitivities.
7. Genetic predispositions.
8. Improper breathing.
     Are they not all (more or less) overlooked factors?

C.
I cannot stress enough that the answers that you are truly looking for
in regards to IMPROVEMENT and HEALING of your condition
are NOT within the technical medical Gibberish that they keep feeding us!

The danger is in this pursuit, that the patient loses sight of the original
purpose of treating their illness and getting on with their life.
So they get entangled in this dysfunctional model of so-called Health Care
( an insult to one's injury, as they say), with little or no hope for recovery.
The longer they stay, the more difficult to "get out".

I urge you ( plural) to seriously take a look at the above observations,
as I strongly feel, that your potential for returning to normal health and
resuming your lives, lies somewhere in paragraphs A & B.
Even if some of you feel it's too late, it is NOT.
Should there be some  irreversible damage, there are many options for some improvement, that may make a big difference in one's life.

I have testimonials from many, including my own and from forum friends.
Hey, here's an idea. I'll invite one to share her experience with you.
So, hang in there.
Should you have any questions or need details how to approach something, you know I'll be glad to help.

Blessings to all!
Niko