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

Be honest what do you think is wrong with you?

I thought about this in the middle of the night, woke up feeling really sick again and couldnt get back to sleep.

I have always tried NOT to tell myself what is wrong with me because I have felt I should leave it to the experts to tell me, but I just cant get past the 2 words Multiple Sclerosis. (Or like Richard Pryor use to say MORE SH*T.)

I had never actually heard of this disease until I started work at a college about 10 years ago when I was teaching computers to adults. Whilst there I met a wonderful lady who has MS and is in a wheelchair. Every week she attended her computer class for months and months I used to admire her even though she was wheelchair bound she was marvellous always doing different computer courses what a star.

Anyway in 1999 when I went blind twice I was more scared it was a stroke but the doctor just dismissed it as POSSIBLY low blood pressure.

After that I kept getting clusters of weird things happening to me.

I remember one day telling my student with the MS about it all and she shocked me when she said you sound like me, thats what happened to me and it took nearly 10 years to get a diagnosis. You need to get it sorted out.

Did I become fixated from that point onwards and think I had MS. Well no I didnt funny enough I just thought NAH, I wasnt about to go into a wheelchair as at the time most of my symptoms were weird, clumsy, balance problems, dropping things, fatique and then the weird stabbing pains everywhere I just couldnt relate to MS.

Then the bladder problems which was so bad I was off work for 6 months.

No not MS.

It only became for me MS when I found I couldnt walk properly which was the start of my journey. Since then I have done a timeline and cant see what else it can be.

I mean I asked my neuro could it be M.E. or Fibro he said no. He has always said if anything he can call it Mylitis.

Every time I get something on my MRI a lesion I think this is it.

Why the hell do I want MS?

Why cant I think of something else. I have tried honestly but nothing else fits.

I am trying to be honest here.

When people ask me what is wrong I now tell them it is MS because my doctor has not told me is isnt.

So what do you think is wrong with you? Mariaxxxxx
11 Responses
1056589 tn?1273750702
I was always extremely healthy.I have never really gotten sick.I have never even broken a bone. I exercised and ate healthy. I was trying to do everything right.

Last January I came down with a mild cold. 2 weeks afterwards my entire world changed. In the beginning I had no clue about the severity of my situation and neither did my doctors.

I had a lot of time to sit and wonder what the hecks wrong with me. All these horrible scenarios running through my head. Test after test comming back normal No answers..

In July 09 I actually did get a diagnosis. I was so happy to finally be able to put a name to it.Transverse Myelitis and complicated  migraines with aura!!! WoooHoooo!!!!

But the TM diagnosis was short lived because I had brain lesions...They had been there the entire time. Even though I was told my initial  mri's were normal....Hey atleast the migraine dx still stands...

The neuro cant tell me that I have definate MS but he also said that it could be MS. We did have the benefits of starting the MS injection talk.I go back and see him in Feb 10'.


I really do feel that I have MS and am just putting off the enevitable.

I use to tell people I have TM and they would look at me like a deer in the headlights. So now I tell them I have an autoimmune disease simular to MS.

Take Care ,Theresa

Avatar universal
Wow what a difficult question.

Since I can remember (which nowadays does seem that distant past lol) I have had shakey hands and my brother has had the same. It never bothered me, I even had a laugh about it if I was eating peas or something like that whilst out to dinner. Mind you I always made sure I didn't have soup because it wouldn't make it to my mouth lol.

Anyway moving on, I only really started to worry when my neck started to jerk back. I was refered to a neurologist (this was 4 years ago). He diagnosed me with Benign Essential Tremor. Two years later after the shaking is getting a lot worse and my left leg goes stiff for no reason I return to docs.

Believe it or not for some reason I thought I had Early Onset Parkinsons. I mentioned this to the GP and she immediately put me at ease. She did however refer me back to neuro.

I didn't for one minute think MS. I had no idea what it was. If im honest after looking on the internet at all sorts of info, it is possible what I have could be anything neurological. MS, Lupus, Fibromyalgia and the list goes on.

I was told its not MS after MRI showed one lesion, LP was clear and Evoked potential tests were clear. Im not 100% convinced either way. So many people go years before getting a DX.

Now im at a stage where I really don't know what to think.

I have had a 3rd referal to the same neuro after having a scary moment where the left side of my face went numb for a day and a half. The scariest part was when my tongue went numb all be it for about an hour, it made me slur my words. Blood pressure has also been high on the last couple of visits to the GP so im off to see them again on monday.

Who knows what is next. It has been a month since I was refered back to neuro and no letter with appt. I will mention it on monday and see what the GP says.

If people ask me which to be honest they don't really, then I tend just to say that when I know I will let you know. lol.

Watch this space.

Anyway, take care all
Lorraine
x
956292 tn?1334058469
I am not a doc and I am basically going from what I have been reading on my MRI's but I feel strongly I have MS..It may be wrong of me to self diagnose and again I am no doc and maybe I am wrong....but the more I have learned here and read my reports I feel that I do have MS...I dont know if I have the right doctor right now and my next appointment will tell me that as there are a lot of unanswered questions I need him to answer regarding my reports and tests but I am going to get an answer..

I do know there is something wrong ....until he answers my questions at my appointment I stongly feel my symptoms and scans point to MS

JibJen
Avatar universal
this is an interesting question, and, for me, the answer seems to change from time to time.

throughout most of this experience, i felt that i have MS.  i have had 2 brain and 2 c-spine MRIs which did not reveal any lesions, and a CT scan and VEP--all normal.  the doctors have said repeatedly, it is NOT MS.  i didn't believe them.

i posted my story on a different MS board to see what folks with a diagnosis had to say.  several of them said although some of my symptoms mirrored theirs, the overall picture didn't sound like MS to them.  i began to be less convinced i had MS after communicating with others who actually have it, although i have certainly not crossed it off my list.

then, after seeing the neuro-ophthalmologist last month, i was convinced i had lupus or another autoimmune disorder.  a visit to the rheumatologist and results from recent bloodwork have ruled lupus out for now, although i am going for a second opinion next thursday just to make sure.  i am also scheduled for a lumbar puncture on monday with my neurologist to help rule out central nervous system vasculitis, though the rheumie and my neurologist feel fairly certain i do not have it based on my previous scans and symptoms.  i pray to God they are right.

for the past week or so, i have been thinking i might very well have lyme disease.  while researching online, i saw a list of 70+ symptoms that those with lyme suffer from, and it said if you have 20 of them, a more definite lyme work up should be ordered.  i have 44 of the symptoms on that list, and i have ordered a blood test kit from IgeneX and hope to get the western blot assay test done soon.

with healing thoughts,
binx
Avatar universal
I honestly don't know what to think. I have been on this journey for 1.5 years now and the only dx that I did receive was "possible clinical lyme disease". I spent thousands of dollars on different lyme tests, none which were ever conclusive. I too have appx 30 symptoms of lyme disease, but many of these symptoms overlap with each other. I was and to some degree still convinced that it has a possibility of being MS. I have had 2 sets of negative brain and cervical mris, negative LP, negative EVP. Two visits to the opthamologist have revealed no signs of ON.

However, I do know that I have Vitamin D Deficiency and High Epstein Barr titers. I have been to an MS Specialist who doesn't feel that I have MS. He has yet to tell me what he thinks I have, but doesn't feel it is MS. I have been to two other neuros who feel the same way. My symptoms could mirror that of many autoimmune diseases.

My latest symptoms seems to be trigeminal neuralgia. I called the nurse at my neuro's office and she told me that the pain I was experiencing probably wasn't TN and that I didn't have MS. Well, that is easy for her to say but not easy for me to believe.
585414 tn?1288944902
They are beginning to understand what is happening now but I am still trying to find out what happenned in the past because that didn't go away. The neuropsychiatric variants of tardive dyskinesia are in study but tardive dyskinesia itself is known. That said it is not typical in itself in that it worsened some form of focal dystonia, not just occured from long term use of a medication. I inquired which form it was and they just gave a long winded speech about "atypical.."etc. Truthfully photos of me as a kid show the abnormal posturing of dystonia and I remember not being able to sit still or wait on lines or be able to sit through movies and other signs of akathesia. As well I did poorly on the space time relations part of the SAT (though well on everything else) and was in adaptive physical education because I could not track objects. There was a lot going on and although its been worsened into tardive dyskinesia whatever neurological disability I have did not go away. I remember when I was a child I went to a neurologist and she said because I had nystagmus that "that can be a sign of a neurological disorder" but got side tracked because the level of motor restlessness I had might have made her thought I had ADHD (which I don't). I do wish she had inquired further. I've been on dystonia discussion forums (and online discussions where you could ask a doctor questions) and not recieved an answer. There are 16 variants of dystonia and since they've clearly not matched me up with any specific variant I would tend to think there are more and I might meet the specific criteria. They've just got to do some more work to understand it.
Avatar universal
Good question and like you I think I have MS.

Its been like fitting a jigsaw together and then some health professionals seeing the completed jigsaw totally different to the one I saw.

For me the pieces came together on the 3rd July 2007, when I woke with pins and needles that has never gone away, with numbness that comes and goes. This was following a year of ill health and previous years of odd symptoms.

Saw my GP 4 days later and she asked me after examination what I thought it was. I said then I thought it was MS. She told me that she thought it was ME!

2 1/2 years later I am still saying MS and she has stopped saying ME but "under neurological investigation".

It is only recently that my neurologist has looked at the SSEP borderline results properly and found that my right leg has significant delay. With low vitamin D, that I should not have and my eyes don't follow smoothly from side to side but judder along. Not much but enough to have my neurologist to send me for another brain MRI and for the first time a C-spine MRI. Also another VEP and to see an ophthalmologist for the eye pain, blurring, fogging when hot, more double vision that came on in May of this year and has been plaguing me ever since.
Previous brain MRI's have shown lesions but of course they are due to my old age of 49!!

Its not been easy as I have had the "you have depression" "stress" and the good old "possible somatised" tags written in my notes.

I do get down and weepy, have a good cry and moan to hubby; and then being an optimist, just keep thinking that at some point it will show and until then just keep going as best I can.

I didn't want MS but as it looks like it is. I now want a diagnosis.  

Sue    
505094 tn?1240321031
So, I am wondering, after reading all these posts how many of you will trust your intuition more than you trust the so-called medical experts that we all go to.  It sticks in my mind what the MS nurse told me-that I must trust my instincts and keep looking for answers and to definitely not give the medical professionals the power that we give them.

I understand only too well how it is what we hear from these neurologists that can smother our drive to find answers.  I've been through that mill as you have.  I only know that when I trust myself more than I trust in what I hear I'm better off.  

I have a diagnosis of MS and it is hanging by a thread.  I've been on Copaxone for a few months and am feeling better, but if it was up to my neuro-I would be off Copaxone and more depressed than ever.  He told me I was wasting my time taking Copaxone and that it was wasting money that could go to other people.  I told him he was wrong.  Believe me that went over like a lead balloon.  I have yet to write him about his attitude because I don't want to rock the boat.  I know Copaxone is helping and I don't want him to cancel the perscription.  

After talking to the MS nurse (she has been one for over 30 yrs and has studied MS during this time), I felt much better about everything.  

We are not stupid people.  We are suffering and we DESERVE to have docs that will listen and work with us.  I'm looking for a new neuro-one that doesn't pretend to listen.  Hugs to you all, hang in there, Charley.
956292 tn?1334058469
Hi Charley,

Thanks for your encouragement and kind words.I can not beleive he said that to you! My neuro is trying to right my issues off as my migraines..I am not opposed to the fact that migraines can cause some weird symptoms but my symptoms had started around June 2009 and are still hanging around....they did not come or go with any migraine I may have had in between..I also have had increased lesions since last MRI. I am still in the boat with him becaause I demanded he begin runnin g more tests on me..we'll just see how it goes...

May I ask you, I have been reading a lot about the tests others have had with their diagnosing and my doc has not done any of them....I will be asking him but if a doc has a sense of what something MIGHT be and has enough info from an MRI, will he not do other typical tests?????

I have had Lyme's ruled out, he did an EEG for epilepsy as my Dad has it and it was negative or fine so he said, and just recently when I demanded more testing because of my numbness and tingling he did a EMG and then sent me to a physical therapist to rule out nerve entrapment..He did say he wants an MRI of spine but thought insurance would not pay due to just having one in June....

Jib Jen

Be Well
428506 tn?1296560999
I know how completely mentally consuming it can be to have an undiagnosed condition that is slowly worsening and taking over more and more of your life.  However, as a word of caution, my thinking that I knew what was wrong with me contributed to the delay in my correct diagnosis.

I had negative screening tests for Lyme, so I was told that I didn't have it.  Meanwhile, no one could really say what I did have.  I was told to "wait and see" and to repeat my brain MRI (which had lesions) every 6 months.  The plan was that as soon as any changes appeared on the MRI, I'd be diagnosed with MS.  

When I started to experience symptoms outside of what MS would cause, specifically joint pain, I saw a rheumatologist who was convinced that I had lupus.  When those tests came back negative, I was again told to "wait and see."

The situation made no sense to me.  If I had either of these conditions, how could I be this disabled yet still not have it show up enough for a clear dx?  And why would one specialist say I had one condition, while the other specialist thought it was another condition?  That's when I concluded that in my case, the type of doctor I was seeing was influencing my differential diagnosis.  

In 2008, I saw 4 neuros, a rheumatologist, and made about a dozen office visits to my GP.  Along the way, I received so many different opinions, and was offered anitdepressants, neuropathic pain medication, steroids, and conflicting advice about what was happening to me and how to treat the symptoms.

It was really scary to learn that my diagnosis and treatment could depend on which doctor I was seeing!  I don't have a solution to this situation, but think it is important for people to be aware of this.  
505094 tn?1240321031
After several years of 'no answers' I decided, with the support of my primary doc, to have every test I could think of to rule out MS.  I went to a Neurologists, a Rheumatologist, Infectious disease specialist, had what seemed, a zillion blood tests for everything possible, evoke potentials and made tons of phone calls to different MS Societies, MS nurses and other experts.  

I have inflammatory problems that are being treated and found out that they often show up with MS, no infectious diseases, no other diseases.  This was over a 5 year period.  I was also tested for Lyme-3 times.  With the help of my Rheumatologist, I was able to sort out what conditions I had there and what belonged to the possible MS category.

I really felt that I had nothing to lose at all by doing all this. So, when my latest neuro told me at first that I had possible MS and put me on Copaxone and then later told me that I didn't have it I asked him what symptoms that I have did not belong to MS.  

He couldn't answer that.  I asked him to explain what he meant by no MS (3rd visit).  Was it because I had lesions that did not conform to the McDonald criteria?  He said yes.  

I asked him about the small group of MS people that do not have lesions that show up in the correct-McDonald and do not get treated right away and later when it shows up (or not) are really ill with it and it's too late for the meds to do much good.  

He shrugged his shoulders and rolled his eyes.  (interesting professional opinion!)

One thing I've learned about neuros is that they do not, for the most part, like their authority questioned.  He knows my mother has had MS for over 50 years, my sister also has MS and that I have a first cousin on my mother's side with MS.  

I told him that I understood that he didn't believe I have MS, but since all my other tests could not point to anything else, that he just hadn't proved to me that I didn't.  

Like all of you, I would love to know one way or another for sure, but who knows if and when that will happen.  It certainly isn't something that I would wish for myself and I do
know the dangers of self diagnosis.  MS is something I'm very familiar with as I've been around it for a good part of my life with family and several friends.

My primary doc said that she thought some docs just don't want to deal with anything that is not black and white.  She's right.  Most of the people I've talked to say the same thing.  I like the phrase 'doing nothing is not an option'.  That gets me through most days.  

The next thing that I am doing is to get another opinion.  I am also going to send my MRI's to the head of several MRI centers in another state as my sister knows him and he's really good.  I've never been satisfied with the lack of info from the neuros about them.  

It's pretty exhausting to keep doing all this yes?  But what's the alternative?  Hugs to you all, Charley



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