I was hoping someone else would have some thoughts, i found it hard to follow your description of what was going on, you seem to have everything but the kitchen sink :D happening to your poor legs but i'm not sure why you're only thinking it's MS.....heavy, buzzing, numbness, tightness, piercing pain in ankles and knees, odd sensations etc are not actually specific to neurological conditions like MS, and because you already know you have multi level disc and cord compression which can cause bilateral lower limb issues, it just makes sense to me that it's probably more peripheral nerve related than central....
Hope that helps......JJ
I haven't actually 'ever' said that you don't have MS.....the problem you have is that the 'symptoms' you've mentioned in your posts and believe are MS, are actually associated with many medical issues and most are associated with the overlapping medical conditions that you already know about but you haven't as yet mentioned any specific neurologically abnormal 'clinical signs' more suggestive of a neurological causation for example:
Bladder symptoms - urodynamic tests dx neurogenic bladder dysfunction (flaccid or spastic),
Double vision - saw ophthalmologist dx bilateral Internuclear ophthalmoplegia (INO) which is a disorder of conjugate lateral gaze or dx horizontal Nystagmus
With your current situation being as it is, i would recommend you get tests for the more MS suggestive types of symptoms ie visual, bladder, vertigo vs dizziness etc because you need some neurologically abnormal clinical signs for MS to be on your list and if the symptoms you have are not neurologic it might really help pin down what's going on...
Hope that helps........JJ
My VEP results were ok, the first neurologist said. I can't balance properly, I stumble a lot. I'm very out of kilter. This awful awkwardness is very frustrating because the automatic control of movement seems to have gone wrong.
A couple of months back i made an appointment to see a chiropractor who specializes in functional neurology. He found many things wrong. He said they could be fixed, but the therapy would be very intense, and by the end of therapy I should have a clearer picture of what symptoms are from loss of function of essential reflex activity, what is from psychological influences, and what is possibly from the sclerosis/Plagues that are seen on the Mri.
He is not offering a cure, and the therapy is very costly. I put it on hold until i know more, and have enough funding to pay. It would be a long rehabilitation therapy.
This is what he found on his examination. He is a chiropractor, but gives therapy to people who have suffered brain injury, stroke as well as other neurological disorders.
His findings last December.
My left eye is not teaming up and lining up with my right eye- this is causing double vision.
Because my eye is not pointing in the correct direction this is causing a change to my inner ear/vestibular system, called the vestibular ocular reflex, so my balance is affected.
To get rid of my double vision i turn my head to the right and tuck my chin down. This altered posture of the head and neck cause a lot of head and neck symptoms.
When i close my eyes i fall forwards to the right. This is a vestibular issue.
My cerebellum has been trying to compensate for these errors and has created changes to the reflex activities that control eye motion and targeting, balance reflexes and posture, arm trunk and leg coordination are all affected.
My brain health intake questionnaire strongly suggests that there is some inflammation going on which needs to be reduced, this contributes to the brain fog.
The change in function of the Mesencephalon where the ( eye muscles nerves are controlled) especially the Ventral Tegmental area, affects your serotonin output this effects mood and it changes the way my hypothalamus works, so sleep, thirst, hunger, and glands like the pituitary, and thyroid/parathyroid, adrenal, gonads etc... are affected.
Because I have double vision, my RHS cortex is inhibiting the RHS optical lobe. ( It is easier to process the one image) but the neurotransmitters are not selective of which region in the brain and as a consequence the whole RHS cortex is under active, especially the frontal lobes and this has a big influence on my ability to control impulse and bladder function, plan goals and follow through with things. It allows escape of my limbic system so my emotions are all over the place or deadpan flat with no emotion.
That's it JJ, Rehab would be needed to correct each one. He cannot guarantee a cure.
What do you make of these findings JJ?
"Functional neurology" is not actually based on any accepted scientific field, and i find it very alarming that any type of 'chiropractor' would diagnose you with vestibular dysfunction and offer an expensive treatment plan, when you've already seen 4 neurologist who you've never mentioned have diagnose you with vestibular dysfunction!
Chiropractors who practice 'functional neurology' are not the type of medical practitioner I personally would ever recommend to anyone, i've got too many expensive stories in my head of desperate parents trusting their childs chiropractor will cure and or improve their child of Autism, ADHD, Dyslexia, Epilepsy, Tourette's etc etc etc I'm a firm believer that brain plasticity plays a vital role but 'functional neurology' is no better than quackery in the scientific world...
If you seriously believe this chiropractor legitimately found you to have vestibular dysfunction, i would recommend you consider making an appointment with a more reliable specialist to diagnose and treat vestibular dysfunctions eg an Otolaryngologist (also known as an ENT, or ear, nose, and throat doctor), Otologists/Neurotologists are otolaryngologists who have additional training.
The most commonly diagnosed vestibular disorders is Benign Paroxysmal Positional Vertigo (or BPPV) is the most common cause of vertigo, a false sensation of spinning.....
Benign – it is not life-threatening
Paroxysmal – it comes in sudden, brief spells
Positional – it gets triggered by certain head positions or movements
Vertigo – a false sense of rotational movement
....and it is a dysfunction of the inner ear see linc for a reliable understanding and the various treatment options of vestibular dysfunctions http://vestibular.org/understanding-vestibular-disorders/types-vestibular-disorders/benign-paroxysmal-positional-vertigo
If the only visual testing you've had is a VEP and it was normal, you would probably benefit from further visual investigation by an ophthalmologist who will determine if the diplopia is neurological in nature or not...
Hope that helps......JJ
Chiropractic is a pseudoscience and this person sounds like a straight up charlatan. Save your money. He sounds dangerous.
I can only echo-----Stay away from that chiropractor! He has no business delving into your vestibular system, your eyes, your brain, and most of the other places you mention. This will only cost you money and will not solve anything. It could well do you harm. That guy is not a neurologist. What you need are properly trained specialists in the fields JJ mentions.
"I've been to 4 neurologists, my ENT surgeon, an eye specialist in London, spinal surgeon.The names you gave for ENT, and Eye specialists"
Did any of the eye specialists (ophthalmologist?) you've seen actually find and diagnose 'any' visual abnormality eg Convergence Insufficiency disorder, dry eye, Nystagmus, Optic Neuritis, Internuclear ophthalmoplegia INO, Strabismus, unilateral color loss etc....?
I did see a neuro ophthalmologist a year ago. I saw him in london. He asked me to follow his finger, he looked in my eyes and then sent me to his orthoptist.
This is his findings.
Colour vision is normal in both eyes.
The ocular examination is entirely normal.
However, when examining her eye movements, she has a tendency to convergence spasm causing an esotropia particularly in eccentric directions of gaze. I was not convinced of any underlying opthalmoplegia, and indeed there were times during assessment today when she displayed a completely normal range of movements of both eyes.
The rest of the orbital and neuro ophthalmic examination was unremarkable.
The only abnormal finding in this assessment today is that this lady has intermittent convergent spasm. It is likely that this has been precipitated by her incipient presbyopia. I could find no evidence of any neuropathology and no further investigations are needed, and i have reassured her accordingly.
Instead i have recommended that she go to an optician to get a separate pair of reading glasses and I would advise her to be given the maximum plus lenses she can tolerate to remove all accommodative drive during near tasks. At this stage I would recommend she has separate reading and distance spectacles and is quite disciplined to use only the appropriate glasses for visual tasks so that she minimizes any stimulus to convergence.
We will liaise with her orthoptist to help provide support locally. If these simple measures should not suffice, we may have to consider cycloplegia using atropine.
His orthoptist says the same, moderate estropia with diplopia with eventual recovery.
The glasses haven't helped, and the neuro ophthalmologist looked in my eyes and asked me to follow his finger, I don't know what he meant by the rest of my neuro ophthalmic and orbital examination was unremarkable?
An optician does more testing if you ask me.
What do you think JJ?
My son has actually had strabismus since he was a toddler, estropia is when the eye turns inwards, he wears his corrective glasses all the time, his vision is double without glasses, his weak or lazy eye basically gets turned off by his brain so he can see 1 image and the eye turns inwards, his depth perception is totally messed up because of it..
I'm not aware of strabismus -estropia being one of the MS visual issues, it's not an uncommon visual issue and it's more commonly due to Convergence Insufficiency than diseases. Are you aware that adult acquired estropia has been associated with thyroid disease?
Hope that helps.......JJ
I wasn't aware that estropia was associated with thyroid disease. I did have hyperthyroidism for 10 years, and did have the bulging eyes for a bit. I was under a lovely endocrine specialist for those years. He did biopsies often on my thyroid as i had a thyroid adenoma. I received radioactive iodine and it shrunk.
It's a new specialist who decided that it best to remove my thyroid gland. The other specialist had left. Thankfully all went well and my parathyroid glands were left. Since having my thyroid removed, it took awhile for the right dosage of eltroxin to kick in. My thyroid levels have never been better, For over two years my results have been normal, and my GP checks my thyroid regularity.
Even in hospital in 2014, all my blood work including thyroid were normal. My symptoms of double vision and balance problems began in August 2014. I remember while being on the internet the right side of the screen images looked tilted, crooked, that doesn't happen as often now, but that's one of the first things that happened. From there i have deteriorated. My eyes are constantly heavy, i get a lot of blurring, and on a couple of occasions i also felt as if there was smoke around me.
Things are awkward, my spacial awareness is all out, I bang into things, my hands at times just miss their target so i drop things, I can't balance properly so between trying to focus on doing things as best i can, I stumble while I'm trying to do household work, shopping, anything.
It's very difficult because I'm extremely awkward, and things are just not naturally happening, if that makes sense. I'm exhausted and don't know if I'm going to fall, I feel drunk that's the best way to describe this. Wobbly, clumsy. Out of kilter big time. Foggy brain, not myself.
I am due to see a neuropsychologisit in June. He might help :)
Nobody referred me to the chiropractor. I myself went to see him.
You said " I think he is genuine. He is well respected by specialists and GP'S. Patients are referred to him by neurologists for rehabilitation." It's no wonder that someone inferred that you have been included in this group. But apparently you self-referred, as you have heard good things about this person from various respected medical sources.
I don't know what a functional neurologist is, since we don't have that title in the US. I do know what a chiropractor does here, and I'm confident, though, that if one started making claims about treating all the things you mention, there would be sanctions by the governing board.
The person you mention has 2 bachelor's degrees, and who knows what training, yet is passing himself off as someone who can evaluate and treat an MS-like disease from numerous perspectives, all at great cost. That is decidedly not a neurologist. As it happens, my MS neuro was trained in Ireland, and the letters after his name are MBChB. Have no idea what this means, but it's enough to get him a Fellowship and then full appointment at Johns Hopkins, which is world famous.
Personally I wouldn't go to a chiropractor for anything--too much danger of cracking my neck permanently. However, that's just my choice. But I don't think you'll find anyone else here who would recommend a person such as the one you describe to treat many aspects of a complex neurological condition. You'll also have trouble finding any who would have confidence is medical practitioners who refer patients to such an individual.
I think you are having spasms or calcium deficiency. Directly dont think about MS.
how old are you?
what is your profession?
if you are hard worker and having a profession which have long standing,give rest to your legs for every few minutes.
and start taking calcium rich products.
My calcium levels are normal. My vitamin B12 is quite low but only in the past few months.
I had weekly injections for this, and am currently taking tablet form. Still no improvement in my legs. Probably inflammation i expect is causing this pain.
Well, based on your post I did some googling on functional neurology. Though certainly it has a following, it apparently is considered by many to be a pseudoscience, or downright quackery. That's because it cannot demonstrate its effectiveness via peer-reviewed studies, the very backbone of scientific inquiry. Also, there is a good deal of concern over the minimal amount of training a chiropractor must undertake before getting a certification. I'd be concerned too.
From the little I read, I didn't get the idea that this discipline would be useful in treating a disease such as MS (since this is an MS forum). And if a patient does have MS, he or she would not have access to one of the treatment meds, upon principle as well as (probable) lack of legal ability to prescribe. That is pretty worrisome.
Next week I will see the doctor who runs the International Neurorehabilitation Institute (google-able). He is both a neurologist and a physiatrist (specialist in rehab medicine). I usually go there for sessions with one of the physical therapists (doctorate required) who specialize in neurological issues, 90% of which are MS. I will ask him about neurological chiropractic, making sure not use any pejorative language. It will be interesting to hear what he says.
I do understand how someone could become frustrated with mainstream medicine, I really do. For many of us here, including me, getting a diagnosis of MS took years, multiple neurologists and lots of aggravation. But for me, the string of letters after someone's name not only matters, it matters hugely. I don't think it's an either/or situation, and I have to have confidence that the doctor is extremely well-trained in science. If you or others don't share this view, well, that's what makes the world go round.
You are an adult, so you're entitled to do as you please. You've posted on an MS forum, so I answer in that context. You pose your issues and others respond, not necessarily the way you'd prefer.
I have a problem with the word 'natural'--more harm has been done under this umbrella than can possibly be imagined. There's good natural, for instance, how both aspirin and penicillin came to be. And there's 'other' natural--snake venom, the law of the jungle, poison ivy, and on and on. The US Food and Drug Administration has strict standards for what can be called organic, but none regarding natural. Gullible people are duped every day, and charlatans make millions.
In any case, chiropractic possibly can help limbs move better, I don't know, but it can do nothing for many other manifestations of MS. It certainly can't help with disease progression, for which we need chemicals (derived from nature, what else).
I reiterate my stand about training, knowledge, credentials and the appropriate letters after someone's name. Many of these people are decidedly not stinkers, though some are. But there are also many others who are reasonable personable and who practice real science They're the ones for me.
Your choice may be different. That's life.
In 2014 I experienced Cranial Sixth Nerve Palsy, which means one of my eyes wouldn't move laterally to its full extent and moved slower than the other eye. The end result was double vision every time I moved my eyes side-to-side (which we all do a lot!). This was my 2nd time with CN 6th Palsy (different eye this time). The first time we all shrugged our shoulders & I never understood why it happened (but it fully cleared in about 4 weeks). Given it's repeat performance, I sought more in-depth medical help the 2nd time. Furthermore, with the 2014 case, I also had extreme dizziness, lack of coordination, and oscillopsia (awful!).
I spent a lot of time working with the Mayo Clinic in MN. My MRIs showed nothing that would cause the palsy - I had scans of my brain, c-spine, t-spine and MRV/MRAs, VEPs came back fine, hearing tests came back stellar, and Vestibular Testing (not fun) all normal. My double vision cleared up 95% in 6 weeks, but the remaining symptoms lasted 3 months.
In the end, the collaborative agreement was "Subjective Chronic Dizziness". I will admit that I laughed at the name, but the Dx made sense to me. My brain got mixed signals from the prolonged double vision. The double vision cleared up first, but my brain wasn't yet on-board -- so the off-balance symptoms continued. I was offered therapy and continued testing, which I declined. In the end, I decided to go home, quit obsessing about it (believe me...I was laser focused!) and tried to relax a lot more. It eventually cleared up. You can look at my 2014 posts if you want. We can all relate to the uneasiness of not know "why".
I still have some nystagmus & pain that happens when I look to the extreme sides. Once in awhile my brain freaks out and the oscillopsia returns, but it's pretty rare. I have no clue if your situation could be similar to mine, but just putting it out there in case you find similarities that are reassuring. In the end, I took the approach that if all of this was indeed MS, a chronic illness, more episodes would show up in the future. So I focused on healing and just put it to the back of my mind.
New symptoms did show up for me & I am Dx with RRMS just this last autumn (2015). When I asked my neurologist if any of my 2014 issues were related, she said it is pretty difficult to tell. While it appears that I may have a lesion on the very top of my brain stem (which could have caused the CN VIth), it is a really tough spot to image and therefore difficult to say for sure. So I still don't know for certain to this day the root cause.
Every person & situation is unique. Again, my story may be nothing like yours, but I saw some similarities and wondered if it might be helpful for you to know that it did eventually dissipate without any medication or other intervention, but it took about 3 months.
Wishing you the best,
Marian, you seem to be conflating frustration with neurologists who are not answering your questions with inability to perform as doctors. This is not a valid conclusion. Some medical doctors are incompetent, some have abrasive personalities, some fall into both categories. But many who are not particularly admirable in the personality sphere do actually know what they're doing. Often they give no answers because there are no current answers they feel sure of. As I said, many, perhaps most of us here, have gone through a great deal over years before we know what's what. That's very often the nature of neurological diseases. If one has MS in particular, that ultimately will become evident. We have no choice but to be patient.
Further, it's not realistic to say that neuros, or any doctors, are *obligated* to come up with a diagnosis. They are not. The question is, do you want to be right or do you want a diagnosis of some sort? If it's the second, challenging them will not work. Just human nature, no matter whom you're talking to.
If you want to know what's happening to your body, then you need to adopt a different, pragmatic approach. Go back to whichever doctor has seemed to understand you best, sit down, and ask sincere questions. Say you're not clear on X and Y, given Z, and ask quietly for an explanation. Then listen to what is said. Do not interrupt, do not talk over him or her. Ask what should be your next steps. The answer could well be to watch and wait. You won't like that, no one likes that, but often it is the reality, and is the nature of neurological diseases.
You may and probably will insist on this forum that you are tired of doing that, etc., etc. But where have you gotten by being confrontational and argumentative, or at least feeling that way? If you want answers, at least ultimately, then you must do what's needed to get them. This involves being followed over time by a competent neurologist. Getting angry is counterproductive to your goal. As I said, pragmatism works in the real world, no matter what you're dealing with.
That's my take on this entire issue.
There are other neuros. I saw at least 6 before getting a diagnosis.
But slamming one's fist on the desk, figuratively speaking, and demanding answers will not get you what you want.
By the way, 'functional' in the context of symptoms, is generally accepted to mean psychologically-based. Not referring to functional neurology here.
My questions have been sent. Whatever the outcome I'm glad I've asked them. Personally i think being a patient of someone for so long, he is obligated to give clarification regarding my concerns.
I will reiterate some of the concerns regarding 'chiropractic functional neurology'.....Chiropractors are 'not' medical physicians, they do not have a medical degree but in Australia around 5-6 years ago the Chiropractic Board of Australia amended the register of Chiropractors to officially label Chiropractors with the title "Doctor"
eg Mr Joe Blow (B.Sc. Chiro) - I am not a medically qualified registered doctor but a qualified registered chiropractor,
Chiropractors now using the title Dr.......Dr Joe Blow B.Sc. Chiro. (Doctor of Chiropractic) - now appears to be a medically qualified registered doctor but is still only a qualified registered chiropractor.
For obvious reasons using the tittle Dr is very misleading to the general public but it's not just Chiropractors now using 'Dr' but Chinese medicine practitioner's, osteopath's, podiatrist's, acupuncturists etc etc are using the tittle Dr too and legally anyone with a doctorate can present themselves as Dr to the public, as long as they 'specify' what they are board certified and registered as eg Dr Joe Blow (Chiropractor), Dr Joe Blow (Osteopath) etc.
Now you have a splinter group of Chiropractors who are openly stepping beyond the healthcare provider roll for treating musculoskeletal problems, and professing unconventional ways of treatment for a range of ailments and creating a 'specialised' area of chiropractic neuro-rehabilitation ie chiropractic neurology, functional neurology, Gonstead etc.
In Australia, the Australian Health Practitioners Regulation Agency (AHPRA) apparently forbids chiropractors from any kind of specialty recognition, there is no accredited additional training in this country to be certified in Chiropractic Functional Neurology....this additional training doesn't mean the Chiropractor is now a fully qualified registered neurologist but similar issues arise with the Chiropractors use of the tittle Dr.
The general public 'incorrectly' assume when the go to a Functional Neurology clinic the person they have an appointment with is an actual physician, and more specifically a specialised type of neurologist - A neurologist is a physician specializing in neurology and trained to investigate, diagnose and treat neurological disorders but a 'Chiropractic functional neurologist' is still not a physician, just a Chiropractor who has a holistic functional health care approach to nervous system disorders.
Mr Joe Blow (B.Sc. Chiro) became Dr Joe Blow B.Sc. Chiro. (Doctor of Chiropractic) and with registration can now label themselves as Dr Joe blow B.Sc. Chiro. (Doctor of Chiropractic. Chiropractic Functional Neurology)
Holistic Chiropractors position to treating newborns is seriously alarming, you only need to witness the chiropractor, Dr. Ian Rossborough utube video on treating a 4 day old baby, (parents brought the baby to this chiropractor because the newborn was crying regularly at night which disturbed her sleep) to understand how unconventional and dangerous the holistic approach can actually be, even when they are highly respected etc etc
I'm not posting the linc because it is confronting but my point is that, despite seeming to be more medically legitimate than other types of alternative medicine, Chiropractors are just 'alternative' medicine practitioners, pick any medical condition and 'Functional Neurology' has a solution, that alone should make people question validity of......
Food for thought.......JJ
You could give me 500 examples of what you consider outrageous behavior on the part of this doctor or that, and that your anger is righteous and justified, and my answer would be the same. Keep looking for a neuro who will work with you. And then work with that doctor. This means behaving in the pragmatic way I described above.
Your way is not working. Think about it. And also remember the the principle of competency supercedes any individual practitioner; there are competent neuros with reasonable personalities to be found. Chiropractors, no matter how pleasant and eager to take your money, are not competent neurologists.
You can't regulate how a doctor does his job. That's out of your power, so move on. It's that simple. If you get a reputation as difficult, that will follow you. Then you'll have less credibility with the next one. So move on.
I haven't sung anyone's praises. In fact, I've acknowledged several times that neuros can be jerks. There are other neuros, so find one.
I never said the man you like is not a 'competent professional.' I said he's not a competent neurologist, because, well, he's not a competent neurologist. Chiropractors are not neurologists, no matter what they call themselves. You call this sort of thing legitimate. I don't. They do not practice good science if they think they can do all the things they claim. Maybe some people equate 'legitimate' with certified by some agency--so what. They are trying to practice medicine without being doctors. Bogus.
Look, see whomever you want. Do whatever. But when you post over and over on an MS forum and don't get the responses you want, that should tell you something. Being defensive and angry will not solve anything. That's been my message from the beginning.
You seem to be fixated on getting answers in regards to MS from neuro no. 1 when regardless of his answers, it won't get you any closer to a dx of MS today! Your neuro 1 originally dxed viral causation, and for what ever reason considered MS at some stage but eventually after some years, dismissed your issues as 'functional' (mental health)...
You did what most people would and looked for a neurologist who'd assess and find your neurological condition even if it wasn't MS but you seem to be failing to take into account anyone's professional medical opinion, experience, understanding or explanations when it differs to your way of thinking, regardless of your misinterpretations of the Mcdonald criteria your still obsessing over on nuero no 1's opinion of what's wrong with you, which honestly isn't good for you or anyone's mental health.
You have more recent opinions from 3 other neurologists (professor of neurology, &1 or 2 MS specialising neurologists) and the private neuro-radiologist who reviewed you're MRI's in regards to MS (which i've gone through in detail in your Mcdonald posts) and despite considerable years of collective test evidence, TODAY you still do not meet the minimum Mcdonald requirements and you don't have any neuro specific clinical abnormality that could put MS close to the top of your list.....you can't keep avoiding those details because once upon a time neuro no 1 considered it might of been MS but didn't dx you with MS!
You probably believed neuro no 1 was a caring well respected neurologist for many years to have stuck with him for so many years, but he dismissed you with functional issues, which would of been very confusing and upsetting but it doesn't make one scrap of difference if neuro no 1 was the best neuro in the world or an absolute incompetent fool, attempting to take him down a peg or two won't get you any closer to a dx of MS today!
Please consider not looking back on anything if it won't change your situation today or tomorrow, please consider asking your supportive family physician for a referral to a psychiatrist or psychologist to get mental health officially 'on or off' your causation list once and for all and additionally see if you can get a referral to your local hospitals physiotherapy vestibular rehabilitation therapy clinic, which depending on your health system or insurance may be fully covered and will provide you something practical to do to change your current imbalance visual situation.
Seriously if your focus is not helping you move further forward and get the practical constructive medical help that you need, then there comes a time when you have to say enough is enough, and change the direction of your focus so that you can recover or improve your current situation....