Thursday, August 28, 2014

Tuesday, September 22, 2009 Shell, Community Member, asks

Q: Waiting for Diagnosis- How long can it take and can it be determined without a positive MRI?

Hello.  I am currently under the care of a neurologist who suspects MS. I had an MRI of brian and C spine last week.  He told me he was ordering them with contrast but did not. I was suprised by this. I have read that new lesions if active do not show up on an MRI without contrast.  The nurse called to say the MRI was negative.  I am currently experiencing the following:

pins & needles
numbness in hands & feet
pins in face
shocking sensation in my head which radiates down to my hands
interior vibrations- constantly (except when lying down)
spasms in left leg & hip
Significant weakness in left side
significant decreased feeling in left side
heat sensitivity
feeling of water on my feet and legs
dizziness
lack of coordination

stumbling
itching
RLS
uncontrolled movement/jerking
hand tremors
severe fatigue
bladder difficulty
forgetfulness
inability to concentrate
depression (because of all of this)
seeing black things in my vision to the sides


I also had EMG last week which was negative. Neuropathy was ruled out. I've had all sorts of blood work and it seems all has been ruled out. I'm discouraged about eveything I'm reading about how it can take years to diagnose MS. All I know is my life is so different than it was 2 years ago. I am not the same person because of all of this. Any advice/ encouragment is appreciated!

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Answers (7)
momdukes, Community Member
9/23/09 2:02pm

Shell, if it walks like a duke it is a duke.  MS is so wierd.  My nuero told me that I had,had MS all my life, now I have not had all of those symptoms that you named but I have had most of them.  Honey you got MS, maybe they are not saying it for disability purposes, maybe you shoud put that question to them and watch them squirmTongue out but I am not a doctor but it sounds like MS to me.  I wish you the best.

sherry/smomdukesKiss

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Shell, Community Member
9/24/09 12:29pm

You know Sherry, I've been searching along with my GP for 2 years. She's ruled out everything under the sun although she knew it was auto-immune.  Then in March I started falling and having a lot of the weird symptoms and I told my doctor and my husband I think it could be MS.  My Husband agreed but my doctor dismissed it.  She sent me to a neuro who wouldnt give me the time of day.  It started back up with even more symptoms in September and with a vengence and a partner in the doctor group sent me to the neuro I'm now seeing and he is listening.  What a wonderful and refreshing quality in a doctor.  It's not comfirmed yet, but there is already a degree of relief. 

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meina1035, Community Member
6/28/12 12:22pm

may i ask what region u live in i have been going through years of hell. year after year. thank you

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Audra, Community Member
9/23/09 9:44am

Shell.

You sound EXACTLY like me. Your symptoms are my symptoms to a tee. I have been dealing with this for a year now and I like you led a normal life before all of this. I too had an EMG nothing really came back they said that my left eye rolled up a little which doesn't surprise me since I have had bouts of optic neuritis in the left eye. I had a negative MRI as well but my neuro told me that just because the MRI doesn't see anything doesn't mean that the lesions are not there. I also had a spinal tap but I'm not sure of those results yet. I'm also heading for an appt to see an optical neurologist who my neuro is hoping that he will back up his MS diagnosis and maybe see lesions on the optic nerve. Right now I have a clinical diagnosis of MS which my neuro states is the origional way of diagnosing MS, but he's hoping to see lesions on the optic nerve before he starts me on any long term meds. Ugh...this waiting and not knowing what is wrong with you just makes everything so much worse. I feel like people see me as crazy or something. Anyways, you can get a MS diagnosis without a positive MRI. My neuro told me that he has an MS patient with no lesions and is so symptomatic yet he has another one where her brain MRI looks like she has multiple gun shots and she has not MS symtpoms at it. Its all so unpredictable. Good luck to you.

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Shell, Community Member
9/24/09 12:20pm

Thanks for responding Audra.  Good luck to you with the Optic Neuro doctor.  I hope he can back the diagnosis.  I think besides the symptoms, the not having a definitive diagnosis is the worst.  You do go about your life thinking that people must think you're crazy even though you know your not.  Keep us posted if that's ok.

 

I saw my neuro yesterday.  My symptoms are now worse and he is sending me back for more MRI's of T spine, C spine with and without contrast, EEG, and all the sensory testing.   My numbness is much worse and the shocking sensations too.  My strength on my left side is also worsening.  The doctor told me that something is very wrong.  I'm glad this doctor is proactive.

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Audra, Community Member
9/24/09 12:25pm

Shell.

I totally agree. I have my doctor tell me that he's like 99% sure that its MS. Then I go into the hospital for a 3 day steroid treatment and they did an MRI which was on a 1.5Telsa which is not that great and they don't see anything yet he says that his clinical diagnosis is the same but before he puts me on meds he would like to get some back up from this optical guy. Its just so frustrating its not like I want to have MS. I just want a confirmed diagnosis and treatment. I can't even file for leave at work or anything because I don't think that I have a firm diagnosis. This has just been the worst year of mine and my husbands life. I just want an end so that I can deal with whatever it is and move on. I'm a pretty positive person I can deal with MS but let mem have the treatment that my doc speaks so highly of. I hope I have solid answers soon and I hope you do. Its a peace of mind thingCry

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Connie, Community Member
11/25/11 10:09pm

Hi Audra. Why do you need a firm diagnosis to take off work for awhile? If you aren't able to work you should be able to take leave regardless of the diagnosis. And you DID get a diag of Prob MS.

All my MRI's were neg except one and it was not the typical. I retired on disability and draw Social Security.

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Mississippi, Community Member
9/26/09 10:25am

Hey, I am going to a doctor in October I have had a lot  of MS symptoms but by the way everyone talks its hard to diagnose.  Anyway, my question is about the test.  I am scared to death of the MRI and the contrast.  Did you have any sid effects?

 

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Audra, Community Member
9/26/09 11:45am

Don't sweat it. It will be the easiest thing you do along this whole process. I'm very sensitive to meds and everything else and I've never had a problem with contrast. MS is very hard to diagnose so even if you end up with a negative MRI keep pushing for additional test because you could still have MS like me.

 

Audra

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Shell, Community Member
9/28/09 10:23am

I think being in the confined space is the hardest part but they can give you something to relax you.  Just ask.  Other than that, it's not a big deal at all! 

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Connie, Community Member
5/ 6/10 9:59pm

Absolutely no side effects. Alot of noise in the machine but they should give you ear phones to listen to music. Have no fear.

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Shell, Community Member
9/28/09 10:20am

Audra-  Any word back on your spinal tap?

 

Shell

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Audra, Community Member
9/28/09 10:32am

No word on the spinal. I have a feeling that I won't know until I see my neuro again at the end of October. He said he was really using it to make sure that my proteins weren't high which would indicate some other issue other than MS which I do know that all other mimicers were ruled out. I'm just curious if I had the banding or not. I requested a copy from medical records but haven't gotten anything yet. I can't belive how hard it is to get a copy of your own medical records these days!!

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Wendy, Community Member
10/ 3/09 3:41pm

It's nice to see that I am not alone. I've been suffering with just about every "typical" MS sympom of the last several years. It's only until about 3 or 4 months ago that I was affected with these symptoms simoltaneously. I had my brain MRI this past Wednesday and my neurologists office said the results were inconclusive. To top that off the soonest they could get me a follow-up appointment isn't until November. Ugh, hurry up and wait....I basically have no patience!Undecided

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Audra, Community Member
10/ 3/09 4:12pm

Wendy

You are definitley not alone. I've been dealing with this for the last year. I'm hoping and praying that my neuro opthamology appt on Weds will confirm otherwise back to the waiting game , which I'm not good at either and after a year I have totally lost my patience.. Hopefully you have a good neuro that you are waiting for and hopefully one that specializes in MS...thats really important.

 

Audra

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sharon, Community Member
1/18/12 7:07am

hi everyone i have been unable to walk propally for over three yrs now i have been diagnosed with possible ms which is   triggering of a functional gait disorder i am fed up with living in limbo .my spinal tap showed up obligonical bands which the neurolagist says is consitent with ms and my evoked potentials were delayed consistant again with demyelination .i worked as a carer for 12 yrs and had to give it up due to this ii am now stuttering which could be due to my meds or another part of the condition i am so frustrated with this i feel i have wasted 3 yrs i cant walk around shops etc i wish i could get a firm diagnosis instead of thinking im crazy .is there anyone else with same problem or similar Frown

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Connie, Community Member
5/ 6/10 9:55pm

WinkIt took me 18 years to get a diagnosis and at the onset their was no MRI to get a diagnosis. It has been 28 years now and my MRI's are still negative. I recently had an MRI with the strongest magnet available and it did show 'spots' not visible before that is not that characteristic  with MS but the neuro felt this was from MS.

So yes I am one of those people with a negative MRI.

Until a year ago I was a full time worker. I am now mostly in a w/c.

Good luck with your future and keep your chin up.

Connie

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Audra, Community Member
5/ 7/10 8:38am

Connie

I was finally diagnosed in November and started on Copaxone in that month as well. I still have a negative MRI but I did have a positive spinal tap for o-bands and a positive visual fields test so my neuro felt that was strongh enough evidence to give me the dx and start me on meds. Sounds like I will end up being much like you with the MRI's.

 

Audra

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Connie, Community Member
5/ 7/10 2:10pm

Hi Audra. SO glad you got the diagnosis. Yes, I was the same way. Didn't want to have MS but not knowing was mroe creuling . I am having to remodel my bathroom to be w/c assessible. Wish I had done it earlier. It will be so pretty AND functional.

Have a wonderful week.

Connie

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Mary Beth, Community Member
11/23/11 10:45pm

How old are you know?I am 45 and have not talked to the doctor yet. I went to my internest thinking I had Parkinsons not knowing MS symptons and was talking to a nurse friend and she mentioned mS not relating to myself. I went online and started reading symptoms and could not believe I have had many symptoms for years. I am very active and this scares me to death. I realized when I was on my honeymoon. I thought when I was shaking so bad walking down the isle that it was nerves. A week later my shaking in my legs and itching so bad I was I was bruising myself.

 

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Connie, Community Member
11/25/11 11:19pm

Hi Mary Beth. not sure if your question was to me but just in case I'll answer. I am 62. First symptom at 32 and worked full time until disability 12/2008. Many if those years were spent running up & down the halls at the hospital  where I worked for 12 hours a day.l Could have been lots worse. I am  in a wheelchair part time. But I have always had a healthy attitude and just deal with what ever is thrown at me. Hope I answered all your questions.

Keep in touch.

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Connie, Community Member
11/25/11 10:49pm

I had a patient in the hosp (me being a nurse) several years ago. Her only symptom was a numb pinky! can you believe that!!! Had the MRI and a few other test and got the diagnosis right off.

Another unusual case was a when a 78 yr old lady  got her MS diagnosis. No, this is the truth I promise.

So glad to hear your Neuro gives diagnosis' without a positive MRI. Most do not have this view. Thank goodness more Neuro's are being educated to this.

Why does he want to see optic neurotis when you have a history of it? Sounds like that would be enough to me.

Take Care.

 

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Suz, Community Member
9/24/09 12:46pm

I am  so in the same boat - Negative Evoke Potenial test, neg spinal, - One big new lesion on cerebellum two old ones - all 1 1/2 yrs ago and no new lesions, but symptoms that come and go and ones that have never disappeared.

 

All the symptoms you are experiecing are ones I have/or have had in the last 1 1/2 yrs since the big event.  Still in limbo land - they have to wait until another event b4 diagnosis to meet McDonald criteria - so frustrating - feels like life on hold when you feel so awful and you don't have any definative answer as to why, but hang in there.  This is a great place for support on this strange journey.

 

Have they checked your vitamin D levels as well? doing so much research on this particular vitamin and impact it has on autoimmune and it's relation to MS.  mine was very low and i am taking supplements every day.

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Shell, Community Member
9/25/09 9:50am

Suz- I'm glad that I found this site.  It is a wonderful feeling to know I can come to this site and ask questions or read other posts about MS and symptoms.  It makes me not feel like the lone ranger. 

 

This is a big waiting game.  Waiting is not my strongest quality either.  My neuro did a lot of lab on me but I didn't see it but know it was all ok.  I'll check on the Vit D.  I've read a lot about that.  The past 3 weeks have been a whirl wind.  Thanks for that info.

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Audra, Community Member
9/26/09 12:01pm

Suz- thank goodness I have an older neuro who doesn't put total faith in the McDonald criteria. I think its great criteria but before him and MRI's they ruled everything out and then made the diagnosis. I think this new criteria is leaving some sick folks like us out in the cold. I have a EVP coming up so I'm hoping that will seal the deal so that I can start on meds. It can sometimes take years before lesions show up on an MRI and 5% of folks have no lesions that are detectible at the time of diagnosis. I'm not a patient person either, I'm just praying for something solid. I have my diagnsosis but now my doc is trying to back it up before he starts meds, hopefully this will happen before the new year!! I've been like this for a year now and my family and I can't take another minute. I hade low vitaman D as well. Mine was like 22 and should be at 50 but my doc never put me on anything for it so far. Guess I could take an over the counter. But I have hear the correlation with vitamen D and MS as well. I have also heard the connection between past epstien barr virus and MS which I had twice when I was a teenager and adult.

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Suz, Community Member
9/28/09 8:29am

Hi there...hard to patient when you feel so out there in your struggle but this site has soooo much info that helps with unanswered questions you're left with and the support for all different phases of the diagnosis process. Lucky you have a doc who is flexible in their thinking!!

 

Yes re: Vit D - over the counter is what I take and the form I am taking is ADEKs (it's a chewable) which is for people with malapsortion issues - Thought maybe this is best for me since i've had stomach problems as well.  I take multi vitamins and omega vitamins each day too.  I notice that some magnesium in my vitamins helps with headaches.   It doesn't cure for sure but from what i've read its a common contributing sympton and anything to help our bodies with ammunition to level out a bit.

 

Is the epstien Barr also known as mono? if yes -  i also had it when i was 16 years old - out of school for like 4 weeks.  it did feel like this in the fatigue way - minus the swollen glands and sore throat. the fatigue was also that heavy sinking don't want move kind of feeling. 

Hope we all have a good day! Wink

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Shell, Community Member
9/28/09 10:29am

Suz and Audra-  I too had Mono when I was 17.  I was in bed for a few months.  It was awful.  I see a pattern here.  I've also read of the link between the virus and MS.  Do your Neuro docs believe in that link? 

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Audra, Community Member
9/28/09 10:36am

Shell- I asked my neuro about it when I was in the hospital and he kind of blew it off. He was like yeah they say there is a link but no strong evidence yet to support that. So...to me I think there is a lot of evidence to support it a lot of people with MS have both low Vit D levels and past EBV. I don't know...sounds pretty fishy to me. Check this story out. http://www.webmd.com/multiple-sclerosis/news/20090504/epstein-barr-virus-linked-to-ms

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Audra, Community Member
9/28/09 10:30am

Yes EBV is mono.

Its weird isn't it that a lot of people with MS or probably MS have low Vit D and have had a past EBV. You would think this would say a lot?

 

Audra

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Shell, Community Member
9/28/09 12:10pm

I think it says a lot but I had a Neuro tell me she didn't think it was significant.  From what I've read, there is a link.  I haven't asked my Neuro about it yet, although I intend to.  I'm curious.

 

Is you MS currently active or are you in a remission?

 

 

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Audra, Community Member
9/28/09 2:06pm

Well I just had a flare which required IV steroids a couple of weeks ago so I would say that its active. I think I will be left with some issues that will never go away even though I'm considered to have RRMS.

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Shell, Community Member
9/28/09 4:04pm

I'm so sorry about that.  I know MS never goes away but it's difficult coming to grips with the reality that the annoying symptoms and life altering ones will always be with you.  I'm curious at what point do they tell you what "type" of MS you have.  I'm at the beginning so I'm not sure.  I'm sorry I have a lot of questions. It's so nice to have someone to ask who also knows what you're going through.  

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Audra, Community Member
9/28/09 4:13pm

I defintley know what your going through...I still have a lot of questions and still some mud to go through before I can move out of the probable MS to Definitive. Hopefully that will be coming in the next couple of weeks.

I just asked my neuro, I said I'm assuming that what I would have is RRMS. I belive its 75% of people who have MS have RRMS. Even though RR is relapsing that doesn't mean that some of your symptoms won't stick around and never leave. It alters your CNS. I still have aches and pains and week legs and the fatigue is awful. Thankfully my dizziness/imbalance issues have resolved since I have the IVs at the hospital.

 

Has your neuro only given you a probable MS so far or have you gotten the definitive word. I hate that the diagnosis process takes so long, it makes people suffer way to long without treatment.

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Shell, Community Member
9/28/09 5:50pm

I'm glad your dizziness has subsided.  That is the worst.  I've had that all weekend. He has ruled out everything else.  He says, "probable MS".  His nurse said, "It's MS".  I know it's MS.  You get to a point that you just know.  I have 3 more series of tests and then I hope the diagnosis will come and then some sort of treatment can start.  I am tired of the numbness, tingling and chronic fatigue, etc...   My last test is the beginning of October.  I'll see my doc shortly after that and then hopefully, I'll know more. 

 

I'm sorry you may have all your results until the end of October.  I believe you said that in an earlier post.  That is a rough wait. 

 

I didn't realize that 75% of people have RRMS.  Was the spinal tap a terrible procedure to go through?     

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Audra, Community Member
9/28/09 5:58pm

Yeah. Deep down I know what my diagnosis is. Just wish I could get on the meds soon...Actually the lp wasn't as bad as I thought it was. I drank coke before and after and laid flat for 4 hours and started on motrin and I never ended up with the dreaded headache..thanks god. Definitley something I wouldn't repeat again but it wasn't the worst thing I've been through in the last year that I've been ill.

 

What other tests do you have to do before you get your definitive diagnosis?

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Shell, Community Member
9/29/09 10:15am

I have an MRI with and without contrast of my L spine and C spine tomorrow.  Then on Friday I have the Neuro Sensory tests (evoked potentials ? Vaers, etc...) and on Tuesday I have an EEG.  After those, I've had all there is to do except a spinal tap.  He has not mentioned doing that either.  I've already had MRI's of my brain and C spine without contrast.  I'd be terrified to have a spinal tap done.   

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Audra, Community Member
9/29/09 10:23am

Definitley keep me updated. I'll be interested in your results. If you have to have a spinal tap know that it isn't as bad as it sounds. I refused it a couple of times and then just went with it and was surprised that I worried about nothing. Hopefully all of your test will give you some answers. I'm hoping to the evoked potentials in the next week or so. We'll see!

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Shell, Community Member
9/29/09 1:17pm

I'll keep you updated.  Thank you for your posts and for your answers to my questions.  I hope you're able to get the diagnosis you need from your optic neurologist.  It's so tough being patient.  I'm lucky that I have a very supportive family.  I hope you do too.  Hang in there!!

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Connie, Community Member
5/ 7/10 2:18pm

Just remember to keep lying flat and you will be fine. Matter of fact I don't even remember much pain with the tap all that much.

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Dee, Community Member
10/28/11 10:00pm
For a 3 months my skin has been tingling and itching I went to neuro when I got in the office my hands were shaking so bad I couldn't write.All of a sudden my lower body waist to feet started to shake violently. I was stuttering so bad i didnt remember my kids names;-(I was admitted for 4 days . All test were ran CT,MRI with contrast. After days of violently shaking they told me I was anxious. My symptoms are Sensitive to heat, prickly itchy skin twitching in hands and feet my balance is off.tingling all over everybody says I'm anxious. I have tremors that just started.My hands and feet , I have needles atleast it feel like. People say I'm stressed. I know something is wrong. I can barley type this. 39 and don't know what to do? Dee Reply
Sharon, Community Member
11/11/11 2:21pm

Well, I'm really sorry that you are going through this frustrating time.  I can totally relate to you.  About two years ago I started having some strange symptoms like stiff hands, weakness/numbness in the left side of my face.   I thought I was having a stroke so I went to the ER.  They ran lots of testing and said they couldn't find anything wrong with me.  My left side seemed to be the most affected and then a few months later my left knee started buckling when I'd walk.  It was really annoying and then a few months later my other knee started buckling.  I have ogne to all kind of doctors and they have run all kinds of tests that have never showed anything wrong.  My last doctor appointment out of state was just a big joke.  Doctors just don't listen and it's sure frustrating.  I am 37 and have a husband and a family to take care of.  Just know that you aren't alone.  

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Mary Beth, Community Member
11/26/11 12:08pm

Thanks for the info it is so hard waiting to get in to see the neurologist. I just got my wedding pictures back and all of them my eyes are off. This is when I figured out something was wrong. I could barely walk with my legs shaking so bad and I got laryingitis and could barely speak. I had bruises all over my legs from icthing so bad. I thought after the wedding it would go away but I was still shaking a week later. Once I went online I realized I had many more symptoms through the years. Do these symptoms go away for a while? I am vary athletic and really struggling coming to terms with this. I was a ski instructor before moing to the bay area two years ago for my husband. It has been hard working out because I feel I should be stronger and doing yoga is super hard as my balance and shaking is tough to do in class as well as embarassing. Praying I do not have but trying to be prepared. My husband is not interested in talking about it which makes it difficult. Thanks for listening.

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faemoon, Community Member
11/11/12 10:54am

Thank you so much for posting this.  I obviously do not need to tell you how scary having these symptoms are without a diagnosis.  I also find the article referenced about EBV and low vitamin D.  I have very low Vitamin D but I don't know if I ever had contact with EBV.  My MRIs with contrast have come back negative and I did have an LP a year ago when I had my first very big attack which landed me in the hospital being observed for a week and it had some abnormal proteins and very high white blood cell count, but they discounted that.  They found a protein that diagnosed Sjrogren's syndrome but told me that Sjrogren's always piggy-backed on another virus, it never came in alone.  I also found out that people who have Sjrogren's Syndrome have elevated EBV....Why is it that I seem to be better at putting the pieces together than these silly neurologists? 

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Evie, Community Member
12/10/12 4:42pm

I have had only 3 numb spots on my body for 12 years, 2010 my big toe went numb and 2 weeks ago my thumb, now yesterday my tongue became tingly and all these things are constant now including the tongue. I have had pins & neddles, dead arms, shakiness at times, unexplained pains in rib cage, wet spots, burning spots, I have bad balance, I am forgetful, I have poor concentration, I get tongue twisted and sore feet. I am not saying I have ms, I am curious. I had an MRI 1 1/2 year ago and it was negitive, my GP sent a fax to the hospital for an app. with a neurologist but I don't know how long that will take, could be years at the rate of our hospitals. I was just wanting to know what anyone thought, am I right to wait for a Neuro opinion if MRI was ok?

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Teresa, Community Member
9/ 5/13 7:16pm

Hello Waiting - my story is too long & fatiguing to share. Started over 14 yrs. with balance disorder (got a dx of Bi-lateral Vestibular Failure. Sent to many neuros (just met #7 yesterday) - most all the symptoms you have - many have gotten worse. 4 MRI's, 1 CAT, spinal tap, Evoked Potentials of every sort!! Used a cane for 13 mos. due to no ballance - too many falls so a walker for next 3 yrs. & 3 mos.. Last yr. with walker was hell on Earth because of the left leg weakness getting worse & all over body fatigue that feels like death!! I have foot drop in left foot & was walking more on the side of my foot. Fast forward!! I've been in need of a power chair for the past eight years ... wall walk & use walker at home. I STILL DO NOT have a diffenetive DX after more than 14 YEARS!! True I had given up searching for the answer for the past about 7 yrs., but due to increase in symptoms I am back to find out what the hell is wrong with me?!!! I will be going for #5 MRI - 1st in 7 yrs. ... spine, inhancement dye- the best state of the art machines etc. This time, I am going to get copies of all my records!!!! At times I've been sooo discouraged that I was ready to throw in the towel, but NOT worth it! NEVER GIVE UP!!! Keep us posted. :)

 

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By Shell, Community Member— Last Modified: 10/01/13, First Published: 09/22/09