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Undiagnosed
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Undiagnosed

I am new to this site and was wondering where and how to get help with my problems ? I was admitted to the hospital in 2006 after being dizzy , lightheaded , falling over and numbness , tingling in rt arm, leg and face. I did have 2 MRI's , one w/contrast .I was later referred to a neurologist who advised me that my Mri showed 4 white spots on my brain and when I tried to do the tests like walking I still was not able to do them w/o falling over. The dizziness and weird head feeling lasted for 3 weeks. After several weeks I was still getting dizzy and tingling and numbness constantly along with stabbing muscle pain and dimished vision. Since then I have been fired from my job , and now all of a sudden , the neuro has decided I don'thave MS , but I definitely have a neurological problem that he can't put his finger on .  I just recently had another episode of the same proportions , my family and friends tell me I need to go to a dr or hospital , but now I don't have insurance or the resources to get medical attention. I don't know what I have , I do know that over the past year , my memory , speech have gotten worse ,I have changed jobs so that I don't have to talk on the phone or try to remember scripts that were necessary at my last job.The other thing that bothers me is that the neurologist suggested that maybe at my age , these things were normal ( I am 49) and am very active , when I am not having symptoms. So any help would be very much appreciated.
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420469_tn?1217650963
You need to find a way to see an MS Specialist. ANYONE who suspects they may have MS should see an MS Specialist.

Heather, Quix or Rena I'm sure will have a bunch more to say about it. I'm Canadian and don't understand the american medical system very well. So I'm sorry I don't have much to offer.

Good Luck
Christine
(un-dx)
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335728_tn?1331418012
Hi Abbie and Welcome to our Forum!  I am so sorry to hear of all the problems you have been having including losing your job but if it's any comfort I can relate to somewhat to your dilemma.  While we here are unable to make any diagnosis, we can try to help to guide you in the direction of a diagnosis.

First of all, you are going to have to try to get to see an MS Specialist.  An MS Specialist is trained and has the experience to read an MRI in a way that a Neurologist or a Radiologist is not.  The MS specialist can see things in an MRI that the other's cannot and that is the first step.  If you can, you should obtain a copy of your MRI and keep it on hand for when you get in to see the MS Specialist.

A full history will need to be provided to the MS Specialist and the best way to provide this is through a time line written by your self.  This way you will ensure that nothing is left out as we all know that it is difficult to remember everything while sitting in the office.  Also, this way you will have a copy and a copy will be on your file and this is backup should the dr. try to say that you didn't provide him with a full history.

The next thing is the in-office examination.  This examination is very important in diagnosing MS as it will tell the specialist about your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses.  An extensive examination will last at least 30 minutes in performed properly and if it is much shorter than than you have every right and are obliged for your own health's sake to question why a thorough exam was not performed and demand a full one.

If the MRI is inconclusive in the eye of the MS Specialist, the next step would be a Lumbar Puncture.  This is a procedure that involves removing spinal fluid from your spine to be examined for Oligloconal banding as well as a myriad of other disease.  It sounds a lot worse than it is and other than the possibility of a wicked headache that is easily remedied by complete bed rest for a few days, the instance of any other complications is small.

If in the instance that the LP is inconclusive, the possibility of having Evoked Response Testing is very real.  I can discuss this with you at a later date if required.

So, the first thing will be to try and get a referral to an MS Specialist from your pcp.  I understand that you are between jobs right now and because I am from Canada, I am not sure how you are going to do that but I am sure that someone else will pop in and give you some ideas.

I hope that this information will help you some Abbie and I am wishing you all the luck in the world with your journey to a diagnosis.  Please know that we are here for you 24/7 and should you need to rant rave, laugh or cry, we are a good bunch of people that have been there and understand ok?

Lots of Hugs,

Rena

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147426_tn?1317269232
Hi, and another welcome to the forum.  You come with a story that we hear all too often.  I'm sorry you seem to be caught with a neurologist that doesn't know where to turn next.  Did this guy seem to think that you had MS 2 years ago?  If so, were you treated?  What kind of follow up did he do?

Did the symptoms ever completely go away?  Did your neurological exam return to normal?

Your history is classic for MS, but other diseasess that can look like MS have to be ruled out.  Did the neurologist do this?  Did you ever have a spinal tap or a VEP - Visual evoked potential of the eye that you had decreased vision in?

If your answer is that the neuro didn't do any of these things, you need to dump him right now.  The work up of possible MS is no place for a lazy, unknowledgeable or uniterested neurologist.  

As far as the MRI maybe being normal (that the white spots were caused by your age) I have this to say.  It is true that a certain percentage of people do have White Matter lesions (bright spots on MRI) as they pass they 40's, those studies were done on people with NO SYMPTOMS!  In the face of severe and suggestive neurologic problems it is folly for any neurologist or doctor to think that a person's MRI lesions "are probably normal."  That can't be determined without a thorough workup and long-term follow up, if even then!  The lesions that are seen with age are rarely "symtpomatic."

Is there anyway you can qualify for temporary Medicaid, and get a new evaluation - by a new neurologist?  Given your history I would recommend the same thing Rena has suggested, that you see an MS Specialist.  You clearly need an updated MRI and also one of the spinal cord.

I recommend that you read two things here on the forum.  The first is a post here on the first page (by me) called, "How Can a Person with MS ahve a Negative MRI?".  The second is on the Health Pages (the link is in the upper right hand of the page right under "Discussions."  Look for the essay called, "Why an MS Specialist."

I hope you find a good home here and that we can help direct you toward answers.  Your symptoms are worrisome and it seems this neurologist has wasted your time.  Welcome again,

Quix, MD (not a neurologist and here unofficially)
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Avatar_f_tn
Well where do I start, I'll try keep it short but it is hard.  
il do my best. Two years ago I had a tia stroke, I was only 38, I also found out I had very high blood pressure 189/169. I also was referred to the eye specialist at the hospital cause I had headaches and other symptoms who then did a mri scan of the brain which picked up white matter hyperinsensitivities on the brain and a lesion . They weren't sure if it was a tumor luckily is not but this is where it all starts um well I was referred to neurologists who then suspected I had Ms as I had the foot dragging pins and needles on left side etc then was put in hospital for tests ie lumbar puncture which turned out fine phew.  Sincethen I have had six monthly scans which again each time picked up a new lesion I now have two on the left one is dorment other is 1.2cm in size and one new one on the right side my lat mri showed concerning for demyeliminating disease ie Ms etc and signal abnormality on my calaseptal interface what ever that means.  My own doctor picked up vitamin b12 defiency which requires regular injections.not the neuros. My health is deteriorating because I have depression they were trying to blame that for my hundreds of symptoms which I even went and saw a councellor who did I want that depressed just lonely. I had pins in needles which started fin my right fingers then spread all over my hand then stated going up my wrist this lasted for a good ten mins which was scary  had it the times since.  Im short sided and have been back to my optometrist six times in the past ten months as if I want to paint my nails or cut them or read I can't see properly and have to take glasses of I don't need reading glasses.  my eye sight had not changed one bit and I now get constant spams under eye socket area is like a twitching spam.  I'm awaiting my appt to see eye specialist at hospital and sing my neurologists next week.  Sorry for long post guys.
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