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Avatar universal

Frustrated

Hi-

I am new here and not quite sure how this works... I have been sick off and on for the past 20 plus years with a variety of different symptoms with the worst being unexplainable and horrible fatigue. After a lot of reading it is clear that my history is typical of remitting and remission MS and my doctor finally ordered a brain MRI that showed a cluster of lesions in the periventricular area of the brain. He also ordered an MRI of my cervical spine and my thoracic spine. My cervical spine was apparently awful with severe dengeratiive disc  disease and he wants me to see a neuro surgeon. I asked if there were lesions present and he said it was unclear??? I'm confused as to how it can be unclear. My thoracic MRI showed disc but not located on the spinal cord. He told me that I can't be diagnosed with MS because I don't meet the McDonald criteria even though I have many clinical symptoms. I am both confused and frustrated and don't know what to do. Oh, I also had a special vision test which was also negative. Any advice would be appreciated. My gut and my family both say MS! Any advice? Thanks so much!
22 Responses
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667078 tn?1316000935
My LP sealed my diagnosis. I never would have been diagnosed without it. I resisted having it for several years. My MRI showed MS but my MS Specialist wanted a positive LP before he would call it MS. Other people have LP's which come up with no O-bands that is what they are looking for for MS. I had 12 others have 0 and still are diagnosed with MS. 0-bands are like tree rings so if you are early in the disease you have fewer or none. Once you get them they don't go away. They could tell I had MS a long time over 40 years. No one can guess how your LP will come out.

Alex
Helpful - 0
Avatar universal
Hi-

Sorry, I had a bad couple of days. Yes, I am seeing an ms specialist who is very thorough. He confirms all clinical symptoms point to MS but must follow McDonald criteria. He wants me to have a LP next. Do you know the percentage of accuracy in this procedure?

Thanks!
Nat
Helpful - 0
667078 tn?1316000935
Then just keep trying. Are you seeing a MS Specialist? I had a different form of MS and it took a MS Specialist to diagnose it. It turned out I had had MS since childhood and so they missed it they were looking for attacks or relapses I just have constant symptoms. My MRI's don't change either. The LP is what finally got me diagnosed I had 12 o-bands they could no longer ignore it. Many people with MS have negative LP's so I do not know. We need a blood test for MS.

Alex
Helpful - 0
Avatar universal
I get what you are saying and I know it is a very tricky illness to diagnose and that there are many mimics, but I also have had a millions tests and have seen a million specialists, but most importantly I know myself and of course my history better than anyone. I guess what bothers me is this McDonald criteria to confirm the diagnosis...I want to enjoy the rest of my years the best I can and I think it would be awful if I'm not even offered the option if I decide I would like to give meds a shot. I'm not even sure I would...if it turns out MS is not the correct diagnosis, I do want to know what the hell has been causing all these symptoms for so long that are getting increasingly worse the older I get. Hopefully, I will get some sort of answer soon. Thanks for your input and also for volunteering for the study!

Nat
Helpful - 0
667078 tn?1316000935
Try not to lose hope. The medical field is daunting. My doctors laugh when I say no more specialists but I am not kidding. I saw dozens of Neurologists trying to get a MS diagnosis. I thought they were going to say it wasn't MS because I had had my symptoms since I was a toddler so I thought they were normal they were to me.

I just volunteered for a  Genetic study I am giving them blood 4 times a year in hopes they might find a better way to diagnosis MS.

Many things are hard to diagnose. Doctors are specialized so they only know their specialty. You have to almost know what is wrong with you to see the right kind of doctor.

Even Neurologist Specialize. I was sent to one and it turns out her area was headaches. All the evidence showed MS but all she saw was headaches. I had to go to a MS Specialist.

I felt better when I found out it was just not me that many people go a long time being tested before they find out they have MS.

There are over 800 Neurological disorders and over 30 non neurological MS mimics.

Alex
Helpful - 0
Avatar universal
Thanks Kyle- I do know that as soon as I start to feel better and am able to do the things I love, I will have an easier time dealing with all this. This particular round has been the worst and the longest... I'm trying not to lose hope!

Enjoy those rides, I'm a rider as well!

Nat
Helpful - 0
1831849 tn?1383228392
I was diagnosed just shy of my 52nd birthday, about 2 1/2 years ago. A little archeology discoverd that my first relapse had been 20 years prior. During the intervening years I had several niggling things that  seemed unrelated. I spent some time chasing these issues. They didn't severly impact my quality of life so I just assumed they were part of aging and let them go.

The summer of my DX I had a major relapse. My path to DX was text book. They could have used me as an illustration of the McDonald criteria; old and new lesions in brain and c-spine, o-bands in my CSF, negative rule out blood work and a comical clinical exam. During the "touch you finger tip to your nose" thing I missed by 4 inches. Duriing the 15' heel to toe walk I hit the wall 4 times :-) Today I'm fine. Get up M-F and go to work. On weekends I ride my bike 20-30 miles...

I bring this up to illustrate that MS is progressive, but it is very slow about it. Even if you DX journey is not all that smooth, you still have plenty of time to figure it out :-)

Kyle
Helpful - 0
Avatar universal
Hi Lulu-

Thanks for the information. I agree, I do not want to force an incorrect diagnosis but at the same time I think it is important to be an advocate for myself. I have been to several different doctors over the years who would throw out a diagnosis relating to a particular symptom. For example, when I thought I was having frequent UTI's the urologist said I had mild interstitial cystitis...I left it at that until after many years and many other  symptoms my partner pieced all my symptoms together and we presented them to my primary care doctor who ordered the brain MRI. My history and clinical symptoms all point to MS which of course, I would prefer not to have. My current neurologist is incredibly thorough and has ordered a million tests to  make sure there is nothing else going on BUT he says he has to commit to the McDonald criteria. I am 56 years old and as MS is progressive, I was hoping to be given something to "possibly" slow down the progression of the disease.
So as the title of my post says, I'm just frustrated!
Helpful - 0
572651 tn?1530999357
Hi, Natalie.  Perhaps there will be new evidence to allow the neuro to call this MS, but at the same time you don't want to force a diagnosis of MS when it can very well be something else. We have several people who have been here for years without a diagnosis or thought they had MS and it turned out to be something else.

There are so many differential diagnosis possibilities and here is the link to one of our health pages which lists just a few-

http://www.medhelp.org/health_pages/Multiple-Sclerosis/What-Neurologists-Must-Consider/show/1219?cid=36

Good luck with this next round of tests -I hope you get some answers soon.
~Laura
Helpful - 0
Avatar universal
Thanks for your response. I will definitely follow up with the DDD diagnosis but I also don't believe this is what has been causing me all these symptoms for over 20 plus years nor would it explain the lesions in my brain. Though a different doctor than I'm seeing now ordered and reviewed the cervical MRI, he said I should go to PT and would be good as new... My new doctor is the one who wants me to see a neurosurgeon.

Anyway, thanks again!
Helpful - 0
8754215 tn?1399834273
lol at the Mcdonald Joke Natalie. I think that the criteria seems a bit harsh as well considering the ammount of pain you go through just for someone to admit you have something and put a name on it. I guess because the Drugs for treating MS are harsh on the body if you dont have it and such.

I honestly think its kinda rubbish the ammount of money we all have to pay just to be told this , not to mention these Garbage tests. I dont understand really who has the time and or money to stay off work for all these drs?

Anyways I primarily wanted to say about the DDD (Disk Disease) that you might want to read up. They say some have severe disease and have no symptoms while some have mild or moderate and they have many. The primary concern with DDD is Spinal Stenosis because with this you can end up with nerves trapped liked Sciatica which can be Debilitating and Crippling for many. Best Of luck to you.
Helpful - 0
Avatar universal
Thanks! I guess I will have to wait and see what they decide about by cervical MRI. So, if not MS, what has been going on for the past 2 decades. I think McDonald should stick to making hamburgers and fries! It is crazy to think I won't be able to get treatment if I don't meet this criteria! Ugh!!!
Helpful - 0
6881121 tn?1392830788
Either lesions in two different areas, or clear evidence of lesions, even in the same area, from two different times.
Helpful - 0
Avatar universal
Thanks! I read about the LP and my partner and I decided against it. If they can't an MS diagnosis without this test, I will have to live with it. I have simply had enough tests which don't really seem beneficial in the long run. Thanks again-

Nat
Helpful - 0
Avatar universal
Hi Kyle-

I am now seeing an MS specialist and he seems to be both compassionate and thorough which I appreciate. I have my next appointment in mid July but do know that he sticks to the McDonald criteria for a MS diagnosis. Am I correct that lesions have to be present in two different areas according to this criteria? I have many of the clinical symptoms as was as a positive babinski reflex and hyperflexia. I have lesions in the periventricular area of my brain and questionable lesions on my cervical spine which confuses me. I was told by the doctor that ordered that MRI that I have DDD and to go to physical therapy. My new guy had questions and this is why he wants me to see a neurosurgeon. I really, really do not want to have a spinal tap. Sorry for the long rant, I just want some answers...thanks for your input!

Nat
Helpful - 0
5987839 tn?1381922502
Just keep in mind that even a LP is not a clear indicator. My MS was caught early, and the LP was negative. My MS Neuro said if we repeated the LP in a few years (WHICH WE WILL NOT) she would expect to have seen the O-Bands .... unfortunately nothing is crystal clear :( Agreed with Kyle .. when you see an MS-specific neuro, it provides peace of mind that you are in the right hands ... I went, expecting to *rule out* MS and it was the other way around, but I am so confident in my doctor that I once quipped to my husband, "Don't you wish YOU had MS so you could have her for a doctor, too??" .. I was joking of course but he said "actually, I kinda do." .. understand and appreciate our humor, just to get the power of having a good doctor that you believe in.
Helpful - 0
1831849 tn?1383228392
...hit send too soon.

and or positive LP results. There are various permutations and combinations of evidence that add up to meeting the McDonald Criteria. THe Natl. MS Soc. has a pretty clear explanation here:

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Paper-TipSheet_-2010-Revisions-to-the-McDonald-Criteria-for-the-Diagnosis-of-MS.pdf

You have brain lesions, you have clinical evidence of something, you may or may not have c-t spine lesions. You need help sorting all of this out. I think your best help will comne from a neurologist that specializes in the diagnosing and treatment of MS.

Kyle
Helpful - 0
1831849 tn?1383228392
Hi Natalie - Welcome to the group :-)

I'm sure your GP is a very good doc. MS can be very difficult to diagnose, even for trained neurologists.  As Alex mentioned, people often go through multiple neuros befor finding the right one. It doesn't see as though your GP is a neurologist.

The McDonald criteria looks for several things; clinical findings (symptoms), dissemination in space, disseination in time  
Helpful - 0
Avatar universal
Hi Bonnie-

Thank you, I am tired of endless doctor visits as I'm sure all of us here are. I am hoping that the neuro surgeon Im going to see will be able to distinguish the "necessary" lesions to confirm a dx of ms from the degenerative disk disease that is also present. If I was confident a LP would confirm the dx  I would move forward but I'm not.

My main symptoms are the fatigue, bladder and the infamous ms hug. New to the equation is the neck pain.

Anyway, thanks again!
Be well!

Nat

Helpful - 0
9291664 tn?1402902186
Please do not go without treatment. It is hard to deal with other's reluctance to face your concerns or commit to a diagnosis (particularly when they're supposed to be the experts.). But MS is progressive and your being brave enough to face it, and deal with it, could allow your future to be ever so much brighter!
Reading stories on the NMSS site, or the like, may encourage you.
Helpful - 0
Avatar universal
Thank you for taking the time to answer me. Maybe the neuro surgeon will be able to discern between "MS lesions" and age appropriate  DDD. I know the next step will be LP but I really don't want to do it. I don't know, I have lived with all of this for so long maybe I should just keep on going and not think about it anymore. I have lived without any type of medication up until now so perhaps this is the path I should continue to follow. My head is spinning, no pun intended!!!

Thanks again, Alex!
Helpful - 0
667078 tn?1316000935
The reason the thoracic was unclear is lesions are harder to see than disks. If you move at all and its hard to stay still it comes out unclear. Moree spinal MRIs come out unclear than clear. Mine have showed my 3 blow disks but unclear for MS. Sounds like your doctor is doing the right tests. It still might take awhile for a diagnosis. I had my first Neurological Hospitalization in 1965. MRIs did not exist. I saw Neurologists my whole growing up but my parents did not tell me. In 2007 my Primary Crae thought I had MS and sent me to a Neurologist. It took two years to be diagnosed with MS even though my first MRI shows MS lesions. I had 5 MRIs, Evoked potential test, Lots of blood work and finally a lumbar puncture which showed MS. Until the LP my Neurologist just said I would be diagnosed with MS in the future.

Neurologist are slow and thorough. Its not MS until they decide it is MS. Each case is different and each Neurologist thinks differently.

I had to go to a MS Specialist to be diagnosed. I had a rarer kind called Primary Progressive.

Many of us are confused and frustrated trying to get a diagnosis. I started with  a neurologist who said I had MS but he took a job out of town and sent me to Neurologist 2 she was a headache specailist and said I definitely did not have MS even though all the test she sent me for showed MS. Neurologist MS said I would be diagnosed with MS in the future and needed to keep going to Neurologist. Neurologist 4 said it could not be anything but MS but would not diagnose it for a year and a half. Once he diagnosed me he said he was not going to treat it. This confused me. I went to Neurologist 5 who said it was Primary Progressive.

Alex
Helpful - 0
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