SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
1.5 years of symptoms, neuro appointment coming up
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This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

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1.5 years of symptoms, neuro appointment coming up

Hi everyone,
I'm from the UK and getting increasingly frustrated with our system for getting a diagnosis and I've come to realise that this seems to be a general problem across the world.

I'm in my early 40s and female.

When I started getting symptoms a couple of years ago I was really fit, doing between 8 and 11 hours a week of exercise classes and could still handspring and cartwheel. On my 42nd birthday I woke up with a stiff neck and things have gone downhill from there. Over the course of a week it got worse and I got pins and needles down my right arm and into my hand and all the muscles in my upper body on the right hand side went into spasm, my hand also started going bluish from time to time. My osteopath sent me to the doctors to get muscle relaxants and then another week later sent me back to the doctor to get a referral to neurosurgery as she thought I may have damaged a disc in my neck, even though I didn't have impaired neck movement.

I got an MRI on my neck which showed disc degeneration but no nerve impingement and the neurosurgeon ordered a brain scan as I was also getting burning pain in my right foot and my sister has MS. I got a letter a couple of weeks later saying that there wasn't any demyellineation and so it wasn't MS and they didn't need to see me again.

I decided to leave it and keep exercising as much as my osteopath let me (I had to give up the weights and combat classes but carried on with yoga, pilates, swimming and balance classes). A month or two later I had had to cut this to yoga only as I was getting more and more muscle spasms. I had to cut the yoga class after getting such a severe muscle spasm down all of my right side which lasted for several days and I had to go to see the emergency doctor. He suggested it could be a vit B deficiency and that I should go to my regular doctor and get this checked out and get a referral to a different specialist. The vit B was fine and I got referred to rheumatology.

The rheumatologist ruled out arthritis and fibromyalgia and suggested that it could be thoracic outlet syndrome. I had a CT scan a few weeks later to check for an extra rib and then had another rheumatology appointment a couple of months later. In the meantime it got a lot worse and I lost a lot of strength in the arm and found writing impossible and it was going a lot of different colour and temperatures (all typical symptoms of TOS). I then got referred to vascular surgery and had an MRA and eventually an MRI on the neck and shoulder - the results came back as there being no significant abnormalities. I also had an NCV test which was normal.

I am hypermobile and frustrated that these tests are all done with me lying down flat (I know that is necessary in an MRI) which is a position where I don't get the symptoms.

I also get a lot of other symptoms which the consultants that I've seen so far have ignored because it doesn't fall into their field.
These are lack of balance - I lose balance from my waist to the right despite having very good abdominal muscles, my handwriting has become tiny and I can only write enough to fill in a cheque,
periodic double vision and blurriness in my right eye along with end-point nyastygmus (my eyes themselves are OK) and tiredness of the muscles around my right eye but with no eyelid droop,
my whole right side feels like I have to concentrate to get it to move (my left side works on automatic and the right side needs operating on manual) I am now having trouble walking properly and I have to throw my weight to the left and fix my foot to stop it from catching on the floor,
the muscles at the base of my right thumb have gone stringy,
my right leg shakes really badly going down stairs and I have to lean against the wall and hang on to the handrail to stop me pitching forward,
I find it difficult to start moving and my arm and leg on the right side are slow and feel weak and uncoordinated,
I have face stiffness on the right side and it has made my smile lopsided,
I have some problems (not very severe but annoying and I do lose my voice sometimes) with vocal cord dysfunction and swallowing and my chest muscles at the top tighten up and make it tiring to breathe - this improves when the muscle relaxants kick in.
I also get muscle twitching in a number of areas which started off with my calves but has got worse and more widespread, my toes on my right foot have recently started twitching a lot and I get a mild cramp in my instep.
I also get a very odd tinnitus if I lay on my right side - it builds up until it is like a small motorbike revving up and then I start getting muscle twitches - this doesn't happen often.

All these symptoms have built up over the last 2 years and predominantly affect my right side - the definite nerve pain in my right arm has reduced but I get a lot of cramping pain in very specific areas. I also have hyper-reflexia and one physio said I had positive Babinski reflex in my right foot but that could just be me having very ticklish feet.

I've seen 4 osteopaths and 3 physiotherapists and they don't seem to be able to sort it out - I have had back and pelvis problems for years and I'm used to being able to go to an osteopath and getting it sorted out and being back to normal in no more than a couple of sessions.

I am usually so active and this is driving me nuts! I don't like being dependent on anyone and I'm having to get help with cooking and even cutting up my food, which I am finding really humiliating.

I have a neurology appointment in just over 3 weeks and I'm getting quite nervous about it - I had managed to convince myself that all this was down to the hypermobility but my occupational health doctor has just said that it can't be and that he thinks that it is neurological. He also thinks the vocal cord problem is significant and that I should make sure that I tell the neurologist. While it is comforting that I may soon get a diagnosis, this has also scared the hell out of me as I was stupid enough to Google the link between vocal cord and neuro symptoms and it seems to come up with ALS, MS or Parkinsons. I am sure that there are far more straightforward things that it could be but I can't find them.

Sorry about the length of the post. I have a couple of questions:

1) What is the best way of approaching the neuro appointment? - I figured that I ought to type up a list of what has happened so far so I don't forget anything - I get very nervous around doctors and tend to go to pieces.

2) Please reassure me that it can't be anything nasty - I know I've been really silly using Dr. Google and I need to keep my head over the next 3 weeks.

Thank you very much
Emilyisobel
9 Comments
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Emilyisobel.
Welcome to the forum and our little group here.

First, let me express to you my sadness that you are going through all this suffering  and yet, your doctors cannot help you with ANYTHING so far!
You are certainly presenting a very interesting case here.
Most of your symptoms seem to be of neurological origin.
So seeing the neurologist, makes sense, however, do not put your hopes too high. Just prepare ahead a short list of important questions and a short list of your most pressing issues at present!

Systemic conditions, autoimmune disease, underlying infectious conditions are all possibilities.
However, when I was reading your post, instantly my suspicion was
neurological Lyme disease (neuroborreliosis).


From Lyme MD:

Neurological symptoms associated with Lyme disease are all over the map. They do include tremors, fasciculations, weakness, myoclonus, Parkinsonian features, MS features, ALS features, vertigo, dizziness, alterations in hearing- vision- sense of smell or taste, neurologically mediated stiffness, sleep disorders including sleep apnea, loss of balance, all manner of speech disturbances and psychiatric disorders as listed elsewhere, stiff neck of the meningitis variety, neurologically mediated changes in bowel and bladder function, pinched nerve syndromes, neurologically mediated pain syndromes of all sorts, trouble swallowing mediated by changes in the brain, stroke like symptoms, a wide variety of neuropathic symptoms not listed here, changes in heat and cold perception, HEADACHES, exacerbations of preexisting migraine or tension headache, ADD syndromes, personality changes, neuromuscular syndromes causing muscle atrophy and weakness
--AND these are just a few of the symptoms that come to mind as I sit at my desk on my lunch break. My point is that any one symptoms can be taken out of context. There is a gestalt in diagnosing Lyme disease. Patients have multiple and varied symptoms which come together a whole.

For Neurological Complications of Lyme Disease you may check this
site: http://med.brown.edu/neurology/articles/sr21608.pdf

Let me know what you think.
And please feel free to ask any question.

Best wishes.
Niko



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Hi

Thank you for your kind post.

I have read the stuff about Lyme disease and as far as I know I have never been bitten by a tick which are pretty rare here in the UK. I also don't have the mental fogginess or joint swelling. I do occasionally get some inflammation in the area where my top rib attaches to my spine but that it after it has been grinding a lot. The occ health doctor thinks that there are possibly multiple causes for the symptoms and that the hypermobility may be a factor as some of my joints are very loose.

My main thing is that I'm so frustrated with not getting any answers other than a vague 'there's some wear and tear' but not identifying where or to what extent because it doesn't fall into that particular specialist's remit. I'm hoping that because a neuro specialist isn't primarily concerned with surgery that they will look at it more holistically. I just need to get over my white coat syndrome and make sure that they know everything that's going on without turning into a gibbering wreck! Even if at the end of the day they just give me enough information for my physiotherapist to work with it would be an improvement. I could accept not being able to cartwheel again but I need to be able to use my right arm properly. I've gone from being more active than most 20 year olds to limping around like an 80 year old in the space of a year and a half and I'm finding it very difficult to cope with as I need to be active.

Thank you again and best wishes
Emilyisobel
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1530171_tn?1362547225
Hi Emilyisobel.

Unfortunately, the vast majority of Lyme's patients have never been bitten by a tick,or at least have no knowledge of.
And there are no 2 cases of LD where the symptoms are the same.
The symptoms are extremely variable, mimicking any serious disease, and if you suspected at one point MS, you cannot rule out LD, just b/c of the lack of a tick bite or having no joint, nor any mental fog issues present.
It is one of the most difficult disease to dx and probably the most commonly disease to be misdiagnosed!

I am not suggesting LD but it is a possibility that you can look into.
It's because after all the doctors and all the tests returning very little in useful results,
There's nothing left, other than some extremely rare disease, or an infectious condition that it EXTREMELY difficult to find. Borrelia is one of them and so is Ehrlichia, Babesia, Bartonella, HHV-6,Pathogenic Mycoplasma and other similar infections or co-infections
You may want to go to the Lyme Disease Community to get a better sense of what is going on .
You may also do a search here for Dr. Garth Nicolson, an expert in this field and a contributor in MedHelp.
He's the world's top expert in these type of infectious conditions.
Your condition Emilyisobel, requires that you stay mentally and emotionally strong, as this will help you find answers and get better.
This might take a long time to resolve.
Please stay in touch.
Best wishes.
Niko

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Hi Niko,

Right-o. I will have a look at those things - anything to stop me worrying that it may by ALS! Thank you very much for all of this - I had looked at Lyme disease and everything was related to ticks. I did have a thought last night that some of the symptoms started when I had a wisdom tooth removed about 3 years ago and I got an infection and had jaw parasthesia for a long time. A year later I had an investigation under general anaesthetic of my throat and had flu symptoms straight afterwards. I wonder if it is related to either of those.

I am doing my best with staying together - unfortunately I have very long running chronic PTSD and my employers are being very difficult about making reasonable adjustments or even letting me work, which I want to do and I am having to fight on that front as well. Luckily I have a very sensible psychologist who is helping me to cope and who I can voice worries to rather than scare my husband.

Best wishes
Emily
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1530171_tn?1362547225
Emily, you have finally revealed "La Pièce de Résistance !
My theory.
1. The "foundation" of your condition is PTSD.
2. The trigger for the infection was the wisdom tooth extraction.
3. The second trigger for another infection was the general anaesthetic.

PTSD is not only a disorder on its own, but also linked to mental, emotional and physical illness including such conditions as cardio- vascular disease, diabetes, gastrointestinal disease, fibromyalgia, chronic fatigue syndome.

Ask your Psychologist, if he's trained in Energy Psychotherapy.
It is by far the most efficient Therapy modality and has an excellent success record with severe PTSD cases. And very timely resolution of the PTSD related symptoms, with a high degree of lasting results.
Here's a link to the Psychotherapy Networker Magazine, that will help you
get a better understanding:
http://www.psychotherapynetworker.org/magazine/recentissues/1155-the-case-for-energy-psychology
If you need more info, let me know, as I have training and experience
in this field.  (Advanced EFT Practitioner &  also board certified Hypnotherapist)

To diminish the main entry of toxins and harmful bacteria, which is through the oral cavity, look into "oil pulling".
I have been doing this daily for the last few years , using Extra Virgin Coconut Oil and this has helped me avoid infections.
I also consume 3--4 tablespoons of EVCO mainly by using it cooking
as it does not alter with heat, unlike cooking oils that promote free radicals and inflammation when heated. EVCO is anti-fungal, anti-viral, anti-microbial, anti-parasitic and anti-protozoan.
Don't take my word for this. Visit the coconut research center website for details.

It is unfortunate that your employers are not sympathetic to your situation, however, they are "playing it safe". You must realize that they must bear the burden of any consequences, should something go wrong, while you're
back at work. That's a chance they're not willing to take, I guess.
Perhaps, you may want to contact your local Citizens Advice Bureau or
ACAS (the Advisory, Conciliation and Arbitration Service) for free, confidential advice on all employment rights issues. Their helpline is 08457 474747 in the U.K.

Wish you well . And please do post again any time.
Cheers!
Niko
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Hi Niko

I had a counsellor try EFT on me and it was then that I realised that my coordination in my right hand was compromised when she tried to train me to do it myself. I also had EMDR which had no effect although it was OK while I was actually watching the light. I did have a successful course of hypnotherapy but the current stresses have brought the jumpiness and nightmares back.

What I don't understand is that the current problem started some time after the hypnotherapy had sorted out a PTSD relapse and I was in a very positive frame of mind and was enjoying doing a lot of exercise and was feeling very fit and generally relaxed. I've also had PTSD for nearly 30 years and up to 2 years ago I was always very fit and active. The only period of incapacity that I have ever had was during my last pregnancy which was over 8 years and I spent the last couple of months in a wheelchair due to SPD which cleared up within a couple of months after my daughter was born. I have had back and hip problems since but usually managed to get those sorted with a trip or two to an osteopath. The only other thing I can think of is that I had an eclamptic fit just after my son was born (over 20 years ago) and even though I have no memory of the fit, I do remember very clearly that my right hand was shaking uncontrollably just before it happened, but that is so long ago that I'm sure that it is probably not relevant.

My employers are being rather more difficult than just playing it safe unfortunately. Luckily I am getting very good support from the union. I'm hoping that it will finally get sorted out soon and I can get back to work.

I have ordered some EVCO - something that I had been meaning to do but forgotten about after hearing that it is good for teeth as my youngest daughter seems to have weak teeth. I don't know whether it is related but there is a family history of hypermobility. I had put all the symptoms down to loose joints and the muscles fighting to stabilise them and going into spasm but the doctors I've spoken to recently seem to disagree with me.

Thank you
Emilyisobel
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Hi Emily.

Well, I'm not surprised.
It seems that your PTSD has not been totally eradicated.
A part of it -obviously-was suppressed as it was rooted very deeply.

How many hypnotherapy sessions did you have at the time?
And during those sessions were you taught self-hypnosis?
How about follow up annual or semi-annual "booster" sessions?
Do you do any meditation presently?

Have you ruled out all deficiencies, including TISSUE minerals (not only blood levels) and neurotransmitters?

Interestingly, I came across Symphysis Pubis Dysfunction, recently,
as I was researching something related to Hippocrates, as he had first
recognized this as a medical condition, at the time.

The only link that I can see is that both SPD and Eclampsia may be a  
possible  magnesium deficiency.

And finally, Oil Pulling with EVCO will do wonders for your daughter's oral and dental health, however, you should do it as well AND use it as a supplement -2T daily to start and gradually increase up to 4T daily.

Cheers!
Niko

PS. You should give EFT another chance.
Find an Advanced Practitioner and book a minimum of 4-5 sessions.
For deeper issues you need more than 1 or 2 for effectiveness.
Many people assume that these Therapies don't work based on their limited experience. And if you wish to also try on your own, for practicing on lighter issues, you may do it with your left hand or just try visualizing the tapping (mental tapping).
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Hi

The hypnotherapy was about 7 sessions and I did get taught self-hypnosis through it - I can switch into relax mode fairly easily. The jumpiness isn't related to conscious thoughts or tension - it's a physical reaction to sudden noise or movement. I don't do much meditation as such - I tend to relax with a book as I find it very difficult to just do nothing.

I'm not entirely sure what I have been tested for via blood tests - the information coming back tends to be rather sparse to say the least. I eat a pretty healthy diet and shouldn't really have any deficiencies.

I don't think the SPD and Eclampsia are related to each other but I do wonder if either are related to the present problem. The eclampsia because the sign was in the right hand before the fit and the SPD because of the loose ligaments. I'm doubtful that the eclampsia is a cause as it is so long ago - but I wonder if there was some minor damage that has caused a slight movement imbalance that has eventually caused the problem on the right side - I also had Osgood Schlatter's in my right knee and even before the limp started I was putting about 60% of my weight through my right foot. I do wonder whether I still haven't got the relaxin levels down to normal as my joints seem to be getting looser as I age rather than stiffer, even though they do also crunch a lot. Typing this has made my right-hand go ice cold and clammy and I am starting to lose coordination compared with the left hand as I do more typing and I'm having to go back and correct a lot as I keep hitting the wrong key or keeping my finger on a key and getting multiple letters.

I had a look at EFT practitioners - none in travelling distance for me. I need to be able to use public transport as I can't drive until this gets sorted out.

I should get the EVCO over the next couple of days.

Thank you
Emilyisobel
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I've just had my neurology appointment. I have some tests to go through but the consultant thinks it's Parkinson's disease. I feel a bit shellshocked.
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