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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
551343 tn?1506834118

Introduce yourself here.

Hi everyone you can introduce yourself on this thread.

What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.

You can read about me on the top of this page.

3 years and 1 month I have been waiting. Mariax
276 Responses
Avatar universal
Thanks for starting this new group, Mrs. Aristotle!!

I have been suffering with symptoms on and off for 20 yrs, but since 2006 they have been constant and worsening.

I think it was around 2001 or 2002, when I knew that something was terribly wrong, due to extreme fatigue.

Went to a neuro this Jan and was dismissed because I am without health ins and could not afford all the required testing.

In July I started with a new PCP who was outraged that I had not been dx with MS due to my textbook symptoms.  Not much help for me except that I felt better that I had someone in the medical profession who believed me!!

Started on LDN, prescribed by my PCP, about 7 1/2 wks ago.  It seems to help some of my symptoms, but I still wonder if I'm too far along for it to make a big change.  It is prescribed for PPMS and has shown some positive results in slowing down the progression of MS.

I just take it a day at a time and pray for good things.  I try not to let my health consume my every waking moment, but as is human nature, I long for a dx, as much for validation as for peace of mind.

doni


Avatar universal
Well Hello...glad to have this type of forum since others don't quite seem to fit.
I'm 42yrs old, mother of adult son, but have had undiagnosed symptoms off and on for years.
From Joint pain and swelling to lymph node swelling and tenderness to now currently weakness (heavy feeling) and constant tiredness.

I was diagnosed about a year and a half ago with a dead gallbladder which was removed...and it was dead.
But now my PCP is testing for Autoimune and Viral/baterial infections: Mono, Lyme, Celiac and Lupus.
I won't get the test results for another 24hrs or so.
I was also in a car accedent about three years ago which has left me with terrible back pain since. Sometimes it seems ok, but if I do anything to over-exsert myself and it flairs up with a vengence.
Now...along with the weakness and tiredness my back pain has been constant.
For years I have had a list of strange symptoms that have come and gone with no rhyme or reason.
I'm sick of feeling like I'm falling apart. I'm fed up with having no energy and always wanting to sleep. I just want to know why and figure out how to combat or cure it.
281565 tn?1295986283
What a great idea for a forum. Goodness knows there are enough of us limbo landers out there.

I have always had strange, unexplainable things happen to my body but the last 5 years have been the worse for me. Regular docs and neuro say MS but MS neuros say no. I apparently don't fit their box. I have been told by all that there is something wrong and most likely in the central nervous system but as to what I still don't know.

I had one doctor tell me that I may have something new and it may be years before they have the technology to figure it out. Yeah, lucky me. I've been going to neuro's for over 4 years now and still no answers so I am on a break right now. I have other serious family issues that I need to deal with and can not put out the energy to deal with more.

So for now, like the rest of us, I have Limboland Disease. I wish answers for us all.

Moki
559187 tn?1330786456
You already know me from the MS forum.  I wanted come over and support your new group.  What a wonderful leap you made in getting it started.  I'm sure many would be very much helped here.  I also liked the idea of the good coffee and chocolate cake - yum yum.

I have been diagnosed with MS, but my journey was not a walk in the park and I can surely relate to what others in this group are going through.  If I can help in any way, I will be very happy to do so.  

I also have one more thing to say and that is that my doctor's say there might be another neurological issue or enzyme deficiency issue that is contributing to my symptoms.  I am working through that process and perhaps this forum will help me in some way with that issue as well.  

Anyway, I am happy to see how many people have stopped by so far and wish you and the rest of the member (including myself) as much comradery and kindness as we have seen on the MS forum.  

Wishing all the best,

Julie (Sarhsmom)
983008 tn?1329929430
Hi,

I've been in the MS forum for several months and find it a source of advice and inspiration but it's nice to have the support of people who like myself are undiagnosed as yet,

I'm currently in the ''possible MS but it might be something else'' category at present and my neuro has climbed on that big fence and staying there for the time being,

he put me on carbamazapine for symptoms to which I have had side effects on the low dose, however, I learned this morning he wants me to stay on the same med and increase the dose slowly...

I feel ''watch this space''  describes where I'm at at present

take care all

Val x


Avatar universal
Hello Mrs A

A forum where limbolanders can meet is long overdue, well done.

My MS was discovered nearly ten years ago so that is what we consider my official diagnosis date.

HOWEVER, we suffered through limbo because the neurologist I was with for years, whom I trusted, subscribed to the archaic notion that patients should not be told and didn't tell us.

We have since discovered that this was a common scenario decades ago but, unbelievably, is still happening today and not just to us.

Years and years of limbo ensued as we fought to discover what the cause of my problems were and we were repeatedly turned away by the very people who were supposed to help us.

So, I learned things both about neurologists and the medical establishment which I hope will help others as they fight their way out of limbo.

I am currently taking LDN and this has greatly improved my quality of life. BUT, it is not a miracle cure  and you still must take responsibility for implementing other supportive measures like supplements, diet and exercise.

People say what is MS like, what is limbo? Well, read my blog because it is no holds barred.

http://supo-uk.spaces.live.com/?lc=1033

Supo
909889 tn?1254583417
I guess I happened upon this group because I'm lost and it seems like a good place to stop and take stock. I've read previous introductions and can empathize with the frustration. I look forward to seeing some conclusion for everyone:) Here is my tale.

I would like to list the issues I've been facing and see what the general opinion is. I have seen a Neurologist, Back/Spine and Pain Management Specialist, (2) PCP, Ophthalmologist, Orthopedic, and Physical Therapist with minimal answers.

History: I have had viral Meningitis, Bell's Palsy, Hypothyroidism, Costochondritis, Fasciitis, Dizziness/Vertigo while driving, random tingling/numbness in hands, feet, lips, and nose, burning or irritation in ears, anxiety due to the Costochondritis, and sleep apnea. I've been involved in 4 accidents where the vehicle was a loss (always the other person's 'fault'/citation) but with only whiplash for injuries. I've also had at least two embedded deer ticks.This has all happened in the last 10 years starting with Meningitis.

I have had endless tests for a variety of the above issues but have felt that something ties them all together but I have had no cooperation from the doctors. Lupus and MS were on the list of possible diagnoses. I've recently switched my PCP and she feels that I have chronic Lyme's Disease, which certainly fits the symptoms. I am two weeks into Doxycycline treatment that will last a month and will follow-up from there. It's a scary yet positive prognosis as with the right doctors I can most likely be treated aggressively and reduce the symptoms I feel on a daily basis.

Thank you for reading my story.
Jeff
Avatar universal
Firstly forgive my user name. It's another recent thing going on in my decrepid body and every other user name I tried was taken.

It's been nearly 12 years now for me. My vision started going and my legs went with it in 1998. I was admitted to hospital and told they thought it was demylination and that I would get IV steroids.I didn't get the steroids, finally got mri four months later and saw a neuro.

I had to leave work as I couldn't see to do my job. I was also not allowed to drive.
At the age of 38 my life just stopped.

My Dad had also spent 6 weeks in hospital with this neuro. I stayed with this neuro for three years. I had periods of being really unwell, bedbound and husband taking time off to look after me. These were hellish years with symptoms. September 2001 neuro discharged me with ME.

Five weeks later I had a second opinion with a leading UK MS specialist which my GP had arranged months before. he took hold of my hands and said I had done the right thing in coming to see him. In my notes he wrote "I think this is ms".

I was admitted to hospital for a week with lots of testing. At the end of the week he came to see me and said I think this is ms, but it's rare. He explained it was rare as I didn't show lesions on mri but did show atrophy of optic nerve. This meant my vision loss was severe, permanant and atrophy that is something that happens later with ms.

I was put on IV steroids and 6 weeks oral. My legs became more and more spastic and I was having severe spasms. I was now taking 80mgs of baclofen. My GP arranged an OT and a physio to my home for 6 weeks. I was now using crutches and a wheelchair outdoors. I was referred to an orthotist for the spasticity in right foot, I now had a brace.

MS specialist concerned at my progression requested another mri. This mri took 15 months to get which must be an NHS record. My brain mri showed no further changes so I was discharged after being with him for 4 years.

I went into lock down mode as I always told ms specialist I didn't feel it was ms. I gave up with the nhs for 3 years only having support from my GP.

Last year I plucked up the courage to have a 3rd opinion. Two neuro's examined me and felt it was either progressive ms or a rare form of progressive neuromyelitis optica. They were both shocked in 11 years of symptoms I'd never had a full spinal mri. They both felt it was my thoracic spinal cord.

My spinal cord mri showed no lesions but extensive degeneration of cervical, thoracic and lumbar spine. A neurophysiologist became involved in my case and he wanted to try transmag.

I had cortical brain transmag earlier this year. I've now been waiting 8 months for the spinal transmag. This test can be used for diagnostic purposes but is widely been used in research for many disorders so basically I'm being slotted in when they can.

Neuro's latest thoughts are leber's hereditary optic neuropathy plus syndrome. This is because of my dad's history and the plus syndrome is like an ms syndrome. Trouble is I know leber's is a mitochondrial disorder so it has be passed down from your mother not your father.

My swallowing problems have worsened over the past couple of years. It also takes me so long to eat plus with loss of appetite I really am fighting to keep calories up. My speech can also be affected but it's all due to spasticity.

So a couple of days ago I developed what we think is an anal abscess. I think my body is giving up the ghost and this is due to poor nutrition. So it's off to GP today.

As you can see I'm not embarrassed to talk about anything. I've had bladder incontinence, bowel incontinence a few times. Pride becomes a thing of the past.

I've always said I would help anyone in limbo as I hope nobody has to go through the hoops I've gone through.
551343 tn?1506834118
When you read all your storys it sure puts mine into perspective.

I cant believe the struggle people have to put up with to be taken seriously.

MAZOLA, wow you have been through the wringer. I applaud you for your tenacity in finding out what is wrong. It does sound like Lymes but why did it take so long? Is the treatment helping you?

Valerie64. At least your neuro is taking you seriously which is a good thing. Does the medication help at all? I was put on Gabapentin but it made me feel awful so stopped it, then Amytriptyline but it made it hard for me to get up in the morning and I like my mornings as they are the only time I feel normal. Its after 3pm that my energy winds down.

Supo. I looked at your blog your another one who has had a huge amount to put up with.

Sarahsmum. Hi there you stalking me LOL. I have got some lovely chocolate eclairs in the fridge do you want one LOL.

Mokibear. Hi you sound like me. My neuro told me I dont fit the box. Oh well maybe one day a test will come back and it will say this is what you have, but I dont hold my breath. My dad had Lupus and it took 10 years or more for him to get diagnosed. My brother had Sarcoidosis and he waited over 2 years for diagnosis, and my other brother has just been diagnosed with dysautomia after being ill on and off for 7 years. So there is hope for me yet LOL.

Lilylivergirl.  I can totally see where you are coming from, I get fed up with having no energy. Mine just seems to go from 3pm its like a battery running down. I see you are being tested for Lupus. I had the swollen glands and the loosing hair and one ANA positive. I just want answers but for now I am retiring from the medical roundabout as for me it is doing more harm then good for now.

Doni54.

You wrote:

I just take it a day at a time and pray for good things.  I try not to let my health consume my every waking moment, but as is human nature, I long for a dx, as much for validation as for peace of mind.

Yes I totally agree with you, it is validation isnt it. Its more for my family then me.

Every time my mum rings me she asked if i am feeling better, I just cant seem to get it through to people that I am chronically sick and unless there is some miracle I wont be feeling better. I dont want to talk about my illness for a full phone call it just winds me up, IF I knew what was wrong then they wouldnt keep asking me if I was feeling better LOL.

I dont think LDN is a miracle cure but it does appear to help a lot of people. Its a shame that it isnt freely available. I hope you continue to improve on it though.

analabscess. What a user name LOL. I cant begin to understand how you have been treated so badly. I am sure your experiences will help someone on here you have a wealth of knowledge right now but sadly gained for all the wrong reasons. Big hugs Mariaxxxx



1063463 tn?1302278219
I am a 34 year old female that has had weird symptoms for sometime now.  It started in 2003 with a severe bout of vertigo.  Then that same year during the winter I started getting hives when i get cold.  For a few years I had no new symptoms but I dealt with those 2 the best way I could.  In april I was shopping when my legs became heavy and I had an overall strange feeling.  I came home and went to bed and basically I have been in bed since then.  I was haiving severe muscle pain, twitching in my legs.  Those last two have ceased but I still cannot walk very well.  I have to ride in power carts to go shopping because my legs simply will not cooperate.  The fatigue is overwhelming and if I over due myself one day i will pay for the next 2 days.  I have had Uveitis 3 times in 7 months and been tested for MS, Lupus, and Bechet's.  I also get a weird rash o n my left forearm if I go out in the sun.  I was told that there are no signs of MS on Mri, Potentials, or anywhere else and my ANA and ESR were witin normal limits so that rules out lupus and bechets.  I am not so convinced that having a normal ana will rule out lupus though.  I just know that I am one sick lady and I am here as a last resort.  Any suggestions would be so very appreciated!
Hugs to all.....Dawn
1063463 tn?1302278219
O also forgot to mention that I had Bell's Palsy 2 times...one when I was 16 the other when i was 21 ...the latter one never went completely away....
551343 tn?1506834118
Welcome on board. I have answered your post Weird Symptoms. Hope it helps somewhat. xx Hugs Maria
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