SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Is this my new home...?
About This Group:

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..."

Founded by MrsAristotle on October 2, 2009
521 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Is this my new home...?

I am so glad to have come across this group! I have been suffering for almost a year with a number of things and no one has a clue so I find myself in this confusing limbo land.

May 2012 I noticed I couldnt smell as well I used to, things just didnt smell, food, perfumes, air freshners, dog, petrol, gas, nothing smelt as it should.  I went to the g.p and was given antibiotics and nasal spray, told I had enlarged turbinates.  6 weeks later I notice that I can smell but nothing smells as it should, everything smelt of something rotting, petrol, gas, rotten food, dog, cat wee, poo didnt smell at all and fumes from cars smelt awful.
This led to me not being able to eat as the food tastes just as good as it smells.

I was given another nasal spray and referred to ENT.

ENT looked up my nose and told me I had no obstruction, no physical reason I couldnt smell.

November came and by this time I was drinking protein shakes replacing food, I was still trying to work (I WAS a fitness instructor) The protein shakes were not going down well as I developed a swallowing problem, so not only could I not eat the food due to the smell, I now couldnt swallow my only food source. I was having trouble with my memory, vision, bladder, balance and walking was becoming more and more difficult.

I went in to hospital and had a mri on the brain, looked over by a few medical peeps and discharged with some sip feed drinks.

I now have constant vertigo, my balance is awful, I have muscle weakness in my upper arm, thighs, neck (I cant hold my head up for long) my facial muscles are weak, I cant chew, swallow or yawn properly (I am living on sip feeds) I struggle to get up off the settee, up and down stairs, in and out of bed, bath and on and off the toilet.  I cant hod my arms up long enough to dry or brush my hair, I have to sit down to brush my teeth (I heave/gag badly brushing teeth) my eyes are droopy, I struggle to focus, I have to ask people to move directly in front of me so I can see them while they are talking to me, I cant look to the sides or up and down, it makes my eyes ache and it takes too long to keep re focusing, I feel like all the muscles in my face are pulling it back towards my ears and down at the same time.

I am having A LOT of problems, and as you probably guessed I am not a fitness instructor anymore ha!

I saw a neurologist in Jan who was very rude and after 5 mins in total (including 4 tests and 3 questions) told me I had a conversion disorder and was converting stress in to physical symptoms...

I strongly DO NOT agree with this, before I got ill my life was good, I was a happy, physically fit person that loved my life.

I feel quite confident to say I am NOT stressed or depressed, I know this because I have suffered with sever depression many years ago and know what I am feeling now is NOTHING like what I was feeling then.

My g.p has referred me to another neurologist and, at my request to shut them all up, a psychiatrist (I cant wait for that appointment)

It is so frustrating being basically housebound, living on sip feeds, having to drink through a straw, having to use the toilet more times than I ever thought was possible, when your body and brain are having a constant battle EVERY DAY because the brain wants to carry on as normal (or what WAS normal) but the body says NO... and to top it off to be told its all in your head!!

Thanks for reading and any help/opinions ANYTHING is greatly appreciated :)
7 Comments
Blank
1530171_tn?1362547225
Hi leasam and welcome to our group.

It is unfortunate that we meet here under these circumstances,
but we'll make the best of it and see how you can get some support and advice.
I will personally study your post in detail and give you my
opinion.
It has been quiet lately in our group and also in the forum in general.
Hopefully there will be some increased activity soon.
For now, try to find inner strength to endure this condition,
as it may take some time to figure it out and regain your health.
I'll post again later.
Meanwhile should you have any urgent questions,
please post again or pm me directly.
Cheers!
Niko

  
Blank
Avatar_f_tn
Well, hello as Niko has said welcome to our little family. It has been quite lately around here but from time to time others will pop in and give helpful advice. I feel for you, it sounds like you are going through so much. Just remember never give up on the answers you need.

If you have taken time to read any of the other post in this forum. Nueros tend to turn to stress being the answer when they have no answers. As do many general doctors as well. I was curious as to what test they ran on you, as well as if anything was found on your MRI? One more question have they done any blood work?

Well, it is getting late where I am and I am really tired. But want you to know I will read over your post tomorrow when I am more alert and see if I may have anything to suggest. I also want you to know that you are free to message me as well anytime you wish. I am praying for you and may God be with you,
Kimberly
Blank
Avatar_m_tn
Hi, thank you for your replies :)

There was no abnormalities on the mri, in fact one ENT said my brain was in very good condition and my sinuses looked very good. I have had the usual bog standard blood test and last week had some more taken, I cant remember exactly what the tests were but the nurse mentioned cortisol, ana, kidney and liver function, full blood count and a few other things, these all came back with (dare I say it) No further action needed... I've also had 2 urine tests with the same results...

xx
Blank
Avatar_f_tn
Good morning,
Well, I am glad to hear that your test results came back ok. I asked about the MRI cause many of your sxs, sound like MS.

What also came to mind was maybe Lyme disease. If you love the outdoors. This could be another option I would look into.

I was wondering how long you had trouble eating, and smelling before your other sxs. The reason why is because all your other sxs could be simply due to lack of vitamins. If you aren't able to eat then you probably aren't getting enough vitamins in those sip packs.

The last thing I want to know is are you on any meds. Sometimes you can have odd reactions to meds. These reactions may include loss of smell, and many of your other sxs.

Well, those are just a few things to look into. I am no doctor, and believe Niko may have some more suggestions for you. He has a huge bit of knowledge that he can share with you. May God be with you and trust your healing is coming,
Kimberly
Blank
Avatar_m_tn
Hi thanks for the reply.

I have had bladder issues since Nov 2010 and put this down to aging (though I was only 33 at the time!)

I started with smell and taste problems in May 2012 I was still eating up until September/October  I was forcing food down but it was only small amounts I started to notice I was struggling to swallow but put this down to the taste of food, I noticed I had vision problems, dizziness and aching/stiff muscles mainly the upper arms, neck and shoulders and thighs.  

I decided to avoid cooking as the smell was too much for me and started on protein shakes (my partner is a bodybuilder and helped pick out a decent shake) I struggled swallowing these from the start and eventually they just became too difficult to finish.  

End of Nov I was given sip feeds and started to live on smooth soup, I add a multivitamin tablet to a glass of water every day so I try and get some nutrients.

Over the last few months my vision has got worse, I went for an eye test but was refused when I stupidly told them I had other things going on, my swallowing has reached the point where I cant swallow my own spit, my mouth is always dry (I had been told I had thrush in the mouth and given some liquid to use that was back in November and last week a nurse told me to stop using it as my tongue looked fine..) My voice has changed and often "cracks" I cant raise my voice any more either.  

My blood pressure fluctuates from low to high with it being high on the last 3 occasions and different both sides.

The last time I visited my g.p I asked if all this could be down to not eating and all I got back was your blood work says you're fine, you dont have any deficiencies...

I had come across Lyme but dismissed it as I'm not one for the outdoors :D

I have an appointment with a excellent g.p today so will hopefully be able to get some answers and suggestions from him x



Blank
Avatar_f_tn
Well, just keep us posted. Niko knows alot more then I do, and has a pool of knowledge that he can share with you. I will be praying for you and will check back in soon. If you want to get a hold of me before then just pm me. May God be with you,
Kimberly
Blank
1530171_tn?1362547225
Hi Leasam.

Your condition has many perplexing aspects, so please be patient
with your doctors and testing. it will take some time to sort out.

Neurological impairment, damage and/or dysfunction are associated with
Dysosmia or Parosmia,  olfactory conditions affecting the sense of smell,
and Dysphagia, a swallowing impairment.
The latter is of greater concern as it may affect the natural distribution  and movement of  liquids and foods in your body. Some of them may be ending up in the wrong areas (in the trachea and not in the esophagous, and this can spell disaster. When ingested foods do not go through proper digestive processes, then toxins and bacteria start forming and you can guess the
consequences over time.)
So things to have checked are:
Neurological issues, check for lesions.(MRI)
Bacterial infectious conditions stemming  from ( see my above analysis)
Toxicity
Nutritional  Deficiencies are very suspect.
Candida and mycotoxins.
MS, Lyme (even if not outdoors, borrelia can still be transmitted through bodily fluids) have to be ruled out as well as co-infections.

I will elaborate on this another time.
Best of luck with your dr's appointment today. Keep us posted.
Blessings!
Niko
Blank
Recent Activity
Avatar_f_tn
Blank
Be thankful The Lord blesses you......
Nov 20 by UnsureMS
Avatar_f_tn
Blank
UnsureMS Unemployment appeal has a c... Comment
Nov 20
Avatar_f_tn
Blank
UnsureMS commented on The Lords awesome pow...
Nov 19
MedHelp Health Answers