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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
551343 tn?1506830518

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?1295982683
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?1330782856
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?1329925830
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?1254579817
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?1506830518
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?1302274619
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?1302274619
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?1506830518
Welcome on board. I have answered your post Weird Symptoms. Hope it helps somewhat. xx Hugs Maria
Avatar universal
A brief history of my illness:

I have 3 children aged 1, 2 and 7 years.  Looking back I have not been 100% well since the birth of my first child in 2002.  During my last pregnancy I was unwell with and had tachycardia and sweating, once I gave birth by c-section, I had a 'funny' turn and have had several of these since.  The 1st may this year I 'crashed' and have not yet recovered.  I was in hospital for 7 weeks and did not recieve a confirmed dx.  My symptoms were severe and included: tachycardia, sweating of extremeties, nausea, near faint, chest pain, palpitations, severe orhostatic intolerence, weakness, visual disturbances, sensory overload, hypoglycemia, low B12, low folic acid, low iron stores, low Vitamin D, headaches, adrenaline like rushes, internal shakiness.  There are more but the above were the main ones.  I was found to have coeliac disease, an adrenal tumour and tested positive on a tilt table test for Postural Orthostatic Tachycardia Syndrome (POTS).  I have tingling on/off, facial numbness on/off, vocal hoarsness on/off, breathlessness on/off.  I have inverted T waves, mild mitral and triscupid valve regurgitation, tested positive for antiphospholipid syndrome and had a low result for ceruplasmin (which has not been followed up and can indicate wilson disease).  My adrenal growth has been looked at for functioning but in the urine test done this does not seem to be doing so.  I am having it monitored for growth.  Before I crashed I had recently recieved a Hep B vaccine and a B12 injection.

At the moment I only have a 'suspected' POTS diagnosis although I was being treated for this with betablockers and fludrocortisone.  I have been trying to be refered to a specialist autonomic unit in London, UK but at the moment I am not able to do so.  I see my neurologist again in November and will go from there.  

My Gp has now mentioned ME to me and wants me to be assessed for this - I have now also learnt that Me and POTS can be present together.

I am a member of the dysautonomia (autonomic dysfunction) community which is a massive support to me at this time.
Avatar universal
Here is a little bit about me and my journey:

After a viral illness in July of 08, I began to have vertigo like symptoms and migratory joint pain. In September of 2008, my symptoms took on a MS like nature. My most recent symptoms are:

1. LIGHT MIGRATORY TINGLING IN DIFFERENT PARTS OF THE BODY
2. NUMBNESS IN HANDS WHEN WAKING UP IN THE MORNING.
3. OCCASIONAL PAIN IN MY LEFT SHOULDER.
4. PAIN AT THE BOTTOM OF BOTH FEET WHEN WAKING IN THE MORNINGS.
5. RIGHT SHOULDER STARTING TO ACHE, LOWER BACK PAIN
6. RASH ON NECK THAT WAS PRESENT PRIOR TO ALL OF THIS. (-) ANA but elevated Sed Rate.
7. FLOATERS STILL IN RIGHT EYE - blurry vision as well.
8. INTERNAL TREMOR
9. TINNITUS IN LEFT EAR AND PULSATILE TINNITUS IN RIGHT EAR
10. LATEST SYMPTOM-FEELINGS OF HEAT AND COLDNESS IN BOTH EXTREMITIES, BUT MOSTLY ON THE LEFT SIDE.

I have had 2 brain mris(Sept 08)-both negative
               EVP-October 08
               LP-Normal with the exception of myelin sheath basic protein
               bone scan-Normal (October 08)
               cervical MRI-Normal(Sept 08)
               ct scan of abd and pelvis (Feb 09)-normal
               brain mri w/without contrast (Sept 09)-normal-absolutely nothing
               cervical MRI- w/without contrast (Sept 09)-normal-absolutely no change
              
I have had a ton of blood work. I see my neurologist monthly. The only + blood tests that have come up include Epstein Barr titers (all 3) and low vitamin D level (which was treated for a total of 3 months up until March 09)

Igenix lyme test-Told that the test was slightly (+) and have been treated with abx's for the last 3 months. At this point, I am being told that I have clinical lyme by the LLMD. The neuro doesn't know or acknowledge anything about lyme disease because he doesn't know enough about it and thankfully doesn't pretend to. The ID doesn't have a clue about anything and laughed at everything. I have been to 3 IDs, 2 regular neuros, and 1 MS Specialist.

At this point, I am frustrated, scared, depressed, and not married to any diagnosis. All I know is that I would like to feel better and I have not felt the same since July of 2008. I am very grateful for this forum.
764912 tn?1322711843
Thank you, what a great idea.  As all you have said I to am in Limbo Land.  So I will try to give you a brief history. :)
I've been diagnosed with Myasthenia Gravis, which now Drs feel in incorrect.  I have migraines and have for years.  Also I have a diagnosis of CFS.  20 years ago or so I had autoimmune Hepatitus and with that came chronic pain, weakness and a right leg problem, I guess it drags, but I can control it if I can see my leg.(strange I know).  My liver tests were abnormal for years, however the neurological problems evolved.  I have a small left cer. infarction/lesion, which drs say is nothing note worthy.  And "age related" white matter in the front left lobe of my brain.  
Now I have amnesia at times, loss of balance, falling, weakness on my right side, hyper reflexes, slight positive Romberg's sign, areas of high t2 signal in my MRI(hope I got that right), myoclonus, sleep issues, jerking/twitching/tremor.  
The liver they say is fine now.  Blood work does not show Lupus.  
In a few weeks I go to Mayo clinic, I really hope this will give me some answers, but am not convinced it will since it has been so many years with no answers already.
If anyone has any ideas or suggestions please let me know.
Together it sure makes this Limbo land a little easier...........
Tracy
551343 tn?1506830518
Welcome on board Tracy.

Can I ask you what is autoimmune Hepatitis? I had hepatitis when I was 7 years old in Tripoli and was really sick. OH no need just found it on google LOL.

IF your liver is better then you would think the symptoms would have gone too, so it would look as though you have more than one thing going on, like a lot of us.

When you CFS do you mean M.E.?  M.E. is now classed as a neurological disorder. There is a good link on the forum in the links thread all about M.E. and if you can get time I would read it as some of your symptoms could be M.E. M.E. is now becoming the disease of this millennium because the doctors have finally realised it has nothing to do with YUPPY FLU, but is a very debilitating disease in deed.

AMNESIA. I must tell you in January 2007 I woke up fine and decided to cut and dye my hair. I can vaguely remember cutting my hair but the next thing i remember is being fully dressed hair done and talking to my daughter on the phone and freaking out as I couldn't remember where i was, what day it was, year or where my hubby was.

I was diagnosed with transient global amnesia and would never want that again it is truly scary. They have no idea why i got that although at the time i did have a slight temperature.

If you can get time a read of the hummingbird link is worth it for M.E. as it is amazing stuff.

I am glad you decided to join us.

Have a lovely sunday. Big hugs Mariaxxx
Avatar universal

Hi and thanks again for starting this group.  It helps going on and seeing others having similar problems.

  My Rhemy and Neuro decided that I have some kind of connective tissue/lupus thing going on because of my possitive ANA and a homo level of 1:640.  I have brain lessions that I will have another MRI sometime this month.  Have to pick the paperwork up at the doctor.   The rheumy feels it will eventually all come out in the blood work.  I don't know she wanted me to start taking plaquenil but I feel not having an official diagonsis that is a pretty heavy step to start that kind of medicine.  So I still feel in limbo land but at least I found the two doctors that I will stay with and are willing to work together at getting me better or feeling better anyway.  

Symptoms have been going on for years with early 20's having fatigue.  30's having a possitive ANA with the 1:640 level with intermittent joint pain.  Some numbness in my hands and a small tremmor in my right hand.  Carpel tunnel tests came back negative.  Then numbness in my feet and front of my legs.  Now last February everything hit the fan I was very fatigued for a few month and couldn't raise my hands above my head for long.  Had horrible chest pain.  Here is the list I came up with to take to the doctors to sum up what has been happing. Sorry for the long list but wanted to know who else has what symptoms.
joint pain (about 7 years)
back pain (since early 20's)
IBS (since 25 years old)
chest pain/rib pain that wraps around to back/ upper right belly pain
muscle pain in arms and legs with twitching---pinching feeling once in a while in arms
numbness in hands, legs and feet
fatigue
headaches/ringing in ears
sleeping problems/night sweats (about 2 or 3 years)
shaking or vibrating at night or napping (about 2 years) vibration on bottom of foot
blue flashing light in right eye with eye and orbit pain/eye twitching
dizziness occasionally
numbness and tingling in temple area/tip of nose tingling and itching
dry mouth and eyes/hazy vision up top and bottom/blurry/glasses not as good
hair lose (started last april 08)
right hand has tremor (about 3 years)
heart pvc's and pac's (about 8 years)
while turning head towards right got flashing and streaking lights in eyes/like going to pass out-only happend 4 times since july 08

A little history is in March of 08 I had a heart ablation for WPW and it failed due to the "bad signal" being to close to the main artery in my heart.  Every since then I have had pvc's and pac's and have never really felt great since then.  I was REALLY stressed out and freaked about the whole thing and I really thing everything started then.  I just couldn't get a handle on it and was pretty bad emotionally.  

So there are my symptoms in a nut shell.  I started going to a therapist in January to try and get a handle on the bad feelings I was getting when my heart skips a beat.  After 9 months with her I have decided to start an anti anxiety medicine Celexa.  I have been on it for 2 1/2 weeks.  I am hoping that will help with the anxietys of having all of this.  I have an underactive thyroid and take synthroid and 12.5 mg of metroprol for heart pvc's

Thanks to everyone for letting me tell my story.  


551343 tn?1506830518
Hi just to add what i wrote on my message to you.

I have high blood pressure ish, and my doctor put me on propananol one tablet a day. I have since found out that a lot of neuros give this medication to people with MS as it helps tremors and it is also used for dysautomia (my brother is now on it).

It does help me i am sure with anxiety. Not sure if it does much for my blood pressure though LOL. Mariaxxx
764912 tn?1322711843
You sure have been through, a lot, and I had to say for all that you are going through it is hard, sometimes it is good to have others to talk to that understand.

We share many of the same symptoms, over the years.  I also had liver issues, did they check that yet?  It probably is fine but I have the right pain in my rib area also possibly due to my liver.  

Sounds like you have a Dr who is really trying.  Best wishes, and thinking of you.
Tracy
Avatar universal
Hi and thanks I had a CAT scan a little while ago and I think they checked in the bloodwork.  I did finally find a few good doctors that are willing to work with me and BELIVE me that is the best.  I rember when I first went to the new rhemy and after we were done talking she asked if I wanted something for pain.  I almost started to cry because no one even considered that before.  This is when I was in so much pain with the chest that wraped around to the back and my muscles were in spasm.  The medicine she gave me didn't work but at least she tried.  The old rhemy said you have Fibromyalsia.  It is a cronic pain condition.  There is nothing you can do and no medicine you can take that will help and smiled.  I was in shock and right there I knew he was wrong.  Thanks to everyone that joined this group.  I hope we all get an answer and start on our path to being and feeling better.  tia
551343 tn?1506830518
Hi thats strange I have had this pain in my right liver area too for YEARS. I have had 3 scans now on my liver over the years with no results all clear.

When it comes its AGONY and can last for days and days.

TO TIA.

There is medication out there for fibromyalgia pain. What a useless doctor. Your back/chest pain and spasm sounds like the MS HUG not saying you have MS but it does sound like it.

Fibromyalgia is all about pressure points if you have 11 then you more then likely have Fibro. This image is very good for the pressure points.

http://www.currentworldnews.net/images/fibromyalgia_drug.jpg

It is very easy for doctors to dismiss everyones symptoms as either M.E. or FIBRO when they dont have answers, but you have to look outside the box, and write down your symptoms and then compare them with fibro/ms/me.

Dont forget exercise is good for someone with fibro.
Exercise is bad for someone with ME it takes them longer to recover and that is what causes the fatique
Usually people with MS get tired with exercise but recover quickly with rest.

You have to believe in yourself. IF they say it is fibro then you can work with that for now, but keep looking for the real answers.

This explains the HUG.

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1418

Big hugs, Mariaxxx
Avatar universal
Hi Maria,

Since you started this wonderful group I have been wanting post a quick story about myself.  I am not really in limbo land but want to encourage those who are.  I was in limbo for many years and understand the total frustration and pain that one encounters and would like to help those who are currently going through that.

I am a strong willed person and knew that I had to find an answer and had to have a better life than the one I was enduring.  Not only did I educate myself on tests and diseases, but on how to talk to doctors and how they viewed patients so I could give myself the best advantage possible.

I am currently undergoing yet another diagnosis and I am trying to use what I have learned in the past to get what I need.  I have paid thousands and thousands of dollars for tests this past summer but cannot see the cardiologist again until late January.  Unacceptable.  I am ill now and need help NOW.  I am not going to sit still on this one.

It is not an easy thing, being one's own advocate, but it is also not easy being chronically ill.  We do what we have to do because we know ourselves better than anyone else.

I have met a lot of wonderful, caring, loving people on MedHelp, and this is a nice place to find friendship and kind words as well as direction and hope.

So, limbo landers, keep at it and know there are answers.

Wishing you wellness,
Wanna :o)
551343 tn?1506830518
Thank you for taking the time to post. We need people here also to show that there is light at the end of the tunnel, and that you MUST BELIEVE IN YOURSELF.

There are answers out there for ALL of us, but we need to support to find the strength to find them.

It shouldnt be like this though should it?

How can there be so many people in the same situation with no diagnosis?

I try to stay positive and it is my forum friends and buddies who keep me sane to be honest. I cant imagine what life would be like without the Internet right now.

Again thank you for your post, and I really hope that YOU find answers and get well soon. Big hugs MARIAXXX

1063463 tn?1302274619
I was beginning to doubt myself until I met you and joined this forum.  When you hear so often that there is NOTHING wrong it kind of makes you think"Maybe I am crazy?".  I know I am not crazy and I know that all of my symptoms are real and you are absolutely right in saying that things should not be the way they are in the medical field.  It is a shame that we have so much technology and no one that can properly use it.  I went to my first rheumy appt today and so far so good.  She did try to throw out the old fibromyalgia theory but I jumped in and told her that I do NOT  have chronic pain (well minimal pain) I HAVE CHRONIC weakness and fatigue and lots of other weird things.  She was examining me and found a scar that I have had on my leg for many many years.  She asked me if I knew what it was and I said well I thought it was a scar that developed eczema over it(other docs had said that this is what it was)...she replied NO.  She said it looked like a sarcoid to her.  Which means I may have sarcoidosis.  So now back to the lab this time for a biopsy but it will take a few months to get in.....I will wait.  I have waited this long.....I am still praying that I get answers and so do u all....thanks for taking the time to read and God Bless!
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