I am not sure if anyone can answer this question for me, but with new members on this forum and others passing through with a wealth of knowledge to share I am hoping that some one can.
I have had neurological symptoms now for over 15 years with my first neurologist telling me that my symptoms and the way that I described them and my examination etc. led him to believe he was certain that I had MS. He told me that my symptoms were text book, at this stage I new nothing about MS.
I was placed in hospital with my first lot of IV steriods, brain MRI and a lumbar puncture. All my testing was normal, incl. bloods etc. of cause this MRI machine was an older style one.
Fast forward to now, I have had over 7 MRIs of my brain, thoracic, cervical, lumbar spine etc. over the years, with my last MRI being of my lumbar and up to T11 last week. Latest MRIs have been on T3 machine. I know MS does not occur in the lumbar spine. My report was "normal" which is great, but I found myself crying as yet again I had nothing to confirm my numbness and other sensory issues etc. My symptoms, my reflexes etc. all indicate upper spinal lesion, I have bladder issues etc. my latest symptom is a banding of numbness in my lower back, but I still feel it has to be related to a fall I had, but nothing confirms this, but it is worse when I seem to have done more bending etc.
I know that MS doesn't always show up on MRI and that some lesions can be invisible to MRI until further down the track when more appear etc. but after having this many MRI would there really be a chance still I could have MS?? Thoughts anyone???
Is there anyone out there who has gone this long in the process of being diagnosed? with normal MRI and then eventually that lesions coming into view? My neuro reckons my lesions are there, but on my spinal cord, but he does not think I have MS.
(MRI last week)
I think the poor tech was sick of seeing me, They did T1, T2 and heavily water weighted (stir) sagittal and parasagittal images from T10/11 to S2/3 and Axial fat and water weighted images were acquired from l3/4 to L5 and S1. (this MRI was ordered by my GP not to check for MS or TM but I had a nasty fall and was convinced that was why my back was going numb, but apparently other than some arthritis I am all good, so it was not that.
My previous MRI was of my thoracic and Cervical, similar protocol and again normal.
My pins and needles and sensory issues have gotten worse, but I felt like i was in remission for years and then now it seems to be getting worse again. My neuro seems to think I had an isolated incident or maybe two all those years ago and that I am just getting left over symptoms and that's the way it will be, I feel I am getting worse, albeit gradually, so could there still be a possibility of MS or should I just forget it.
I in the same boat? and three mouths ago I got ON in my left eye? I had this before, so I get another MRI hate them, Nothing show up, the said he needed to talk to my eye dr, like he didn't believe me. I don't care anymore I think the mri doesn't pick up all of you brain. I don't think it see the gray matter in there and I drs don't know the much about ms. I'm so over it. I know I have it and have been told like you that I have it with out the mri so good luck to you.
Something real is going on. There are some strange Neurological syndromes out there. The nervous system is like our electrical system. Sometimes it is not like wires are cut more like they are melted together. Talk to anyone who has been hit by lighting they have all kinds of weird stuff Doctors can't understand or explain. Sometimes it feels like Doctors are blowing us off when really they just do not know. In my case it took dozens on Neurologists over 40 years to figure I had MS. You get into gray matter and that can't be seen in a MRI.
PPMS has few brain lesions, some folks only one or two. My theory and I am no Doctor is people have it all their lives and it is subtle then in their late 40's-50's it shows up. I think it is harder for Neurologists to diagnose. It usually is mostly in the spine.
I do not know what to tell you except what ever is going on is real. A Psychiatrist told me what ever you have is real and its Neurological. It may be MS it may be something exotic but it is real.
If you are like me I have MS but they can't do much about it but try to treat symptoms, so it does not really matter if I was diagnosed sooner or later. All I really got was a name and the same specialists who are just as hands off as they were before.
Hang in there my friend the Dalmatians and Coon hound send kisses.
Thanks for your support, sometimes having someone validate that they believe you makes you feel better. Emotionally it is difficult to go through tests and not have something that can be seen for your symptoms.
I am lucky that my neurologist both current and my past one (who has now passed away) both did think that I had something neurological going on and my GP also does, but it's me that has the difficulty with the lack of conformation on the test results.
My neuro that I have at the moment said that with TM he would be treating me exactly the same now as he would even if I did have the lesion show on MRI, but I feel that I am getting worse, but decline seems slow.
Did your MRI show lesions? Like years ago? My neuro examination is abnormal, and my abnormalities match my symptoms and what I say (apparently) but I just don't get the magic lesions, I am grateful that I don't have lots of lesions on MRI, I am grateful I don't have MS, but I still have these symptoms so it would be nice to have something that validates the reason for them.
I always get depressed after an MRI, I think I build myself up for some hope that it might show a reason for my issues, then i feel sad when it doesn't. Venting on this forum does help with this. Other than a wonky bladder, some weakness in my left leg, some weird sensory sensations I am not too bad, I can still do most things I want to, I am happy for that, I am grateful that my specialist never blows me off, he is great, so is my family and husband, they are all supportive. Maybe I have PPMS? Could that be a possibility?
I should just put it all behind me and get on with it and over it, but when I have prickly sensations and a foot that feels like it's gone to sleep and a bladder with more leaks than a boat with a damaged hull I feel like I wanted an answer... :-)
I hope you are feeling better, thanks for the hugs from your dogs, my poppet is asleep at my feet.
Thanks again, I know you are right, doctors and scientists are still learning.
I have only had 3 MRIs of my brain and one of my C-spine. The 3 brains MRIs could be identical I have lesions on the venticals. Something called Dawson's fingers and a very old lesion on the pons. That is it. My c-spine was inconclusive. They told me I never need another MRI again it is a waste of money. The MS Specialist I have now says I am classic for PPMS. Few lesions on the brain. A very gradual progression which effects mostly mobility. It will probably start picking up in my 50's I am 48. I have talked to many people with PPMS and RRMS and until the real progression starts they act like different diseases. Once the progression starts it is obvious it is MS. In the last two years it has started to pick up. Before that I would not have believed I really had MS. Something Neurological but not MS.
I have had weird Neurological exams since the age of two. They always knew my brain stem had damage. They thought it was a birth defect or early injury. My MRIs and LP sealed it. My LP showed so much inflammation it proved I had had MS most of my life.
I was going to blow it off in the middle of the diagnosis process when a Neuro-opthalmologist said you can't just blow this off you will be diagnosed with MS. I thought she was crazy. From the beginning in 2007 half a dozen Doctors said I would be diagnosed with MS but no one would say I had MS. I was confused. This went on for two years. I was really frustrated. Then I had the LP and they decided I had MS, then Lupus, then finally MS.
When I went to my final Neurologist I thought he will tell me I do not have MS but he confirmed I had MS and told me it was PPMS. Then they took my Bipolar diagnosis away said it had been MS. They apologized for the labeling and the way I had been treated by the medical community.
I feel so fortunate to have doctors who want to give me my life back. One works at no charge what ever. Another at minimal charge. I have there home numbers. I do not call them or break that trust unless it is a true emergency. It is easy to talley up all the bad experiences with the medical professionals but I have met some really kind, caring people as well.
Humans are complex machines. I was a mechanic and love trouble shooting a broken furnace or refrigerator. Medicine is trouble shooting you see what works and go from there until you find what does not.. Humans have so many possibilities. Then there are so many specialties in medicine. It is a amazing really.
MRI can see gray matter. T1, T2 and FLAIR sequence can not. Same thing goes for lesions. MT-MRI sequences see about 20-30 times the magnetization transfer activity than the lesion development that shows on inversion recovery sequences like FLAIR or T2W/T2*. Studies have shown that MT-MRI can see changes up to 2 years before the lesion is visible on T2W. By the way, that is on a 1.5 T machine.
The current sequences have some diagnostic limitations. MRI has increased the number of diagnoses not deceased them, and your doctor has the option to diagnose with out MRI evidence.
my neurologist has given me a diagnosis of Transverse Myelitis, without MRI confirming it. I think he believes that the spinal cord is difficult to image, but the lesions are there because he can tell by my examination, I don't think he believes it is MS after all this time and no changes on my MRI.
BOB can I pick your brains my MRI technique was saggital T1, T2, stir and axial T2. this was of my entire spinal cord only.
The latest one last week was T1, T2 and heavily weighted STIR sagittal and parasagittal from T10/11 down to S2/3. Axial fat and water weighted images were acquired from L3/4 through to L5/S1. The only thing they could find wrong with me was mild facet joint arthropathy at L4/5 and S1. They could find no obvious reason for my symptoms.
So should I try getting a grey matter image done, would this shed any light for me??
I am getting worse, I rode my horse today and it was hard, my legs are getting worse, weaker... but I haven't ridden for a while.
thanks for sharing your diagnosis story with me, it must have been difficult to have doctors blaming your problems on depression and bipolar when this was incorrect. I think you are fortunate that you have found a medical team who are caring, I am not unhappy with my neurologist. Even if he did tell me I had MS, I wouldn't believe him without the proof, (I need it), I want some conformation for my symptoms. I am not looking for an MS diagnosis, I am looking for a reason for my sometimes bizarre symptoms that seem to match more MS than they do TM, but I haven't studied at med school either.
The strange sequences I mentioned (Magnetic Transfer MRI [MT-MRI]) might be available a a research or teaching hospital. STIR sequences (Short Tau Inversion Recovery is related to T2W Spin Echo on a 1.5T or T2* Gradient Echo on 3.0T machines. It also has some similarity to FLuid Attenuated Inversion Recovery (FLAIR) sequences.
MT-MRI is a very different animal. Rather than looking directly for the "echo", it looks for the energy transferred to other molecules by the magnetic spin. This requires an MRI with specialized software and the ability to offset the tuning of the RF Transmitter. You might have to call around and/or find a center doing MRI research stuff to see if they might be interested. Not sure what they may be doing "down under." Here in the States, I'd be looking at UCSF, Standford, Yale, maybe Duke. Places with 7 Tesla units and research budgets. In the PacRim, I think the AU govt is partnered with a facility in Japan.
I guess they could try some other imaging technologies, but I'm not sure what would be applicable. There have been cord imaging studies using fMRI and F18 FDG (Fludeoxyglucose) PET-CT. There may also be Nuclear Medicine studies like the Cobalt-57 (57-Co) Single Photon Emission Computed Tomography (SPECT.) Again, these are more cutting edge research imaging techniques, and not something you are going to find at a regional medical center.
Knowing some of the advanced imaging stuff that is out there and the fact the my company is a research partner with Mayo, kind of gives me some insight that most PwMS don't get. Maybe some day I'll get to go back to research in this area.
I have had MS for 20 years. Then my neurologist asked me to go to another neuro as they were starting an MS clinic. I went and this man told me nothing was wrong with me. The lesions I have had over the years aren't bad enough. I could prove I had MS if I wanted to do another spinal tap, but I needed to prove it.
I am still bothered by this.
It seems to me that you can receive a diagnosis of MS and then have that diagnosis questioned by another doctor and taken away, this has happened to other members on this forum. You are in my thoughts. This would be so frustrating and confusing. I was given a "I am 99% certain you have MS" from my first neuro, but because my MRI never confirmed it he then changed his mind, to You might have MS, but you might not! This is prob better for me than them changing their mind.
thanks for the info on MRI, I will talk to my son in law, who is a radiologist and is best friends with the MRI tech. I doubt if we have this kind of cutting edge technology here and I would have to find a Dr who would be prepared to order it, but I will talk to my neuro about it when I see him next..
Just thank you, you have been so helpful with all this, just understanding is great.
Thanks for your support, I understand how you are feeling, but keep going for those tests, as MS is never an easy diagnosis anyway, and sometimes they do have to wait for the disease to progress more to make a confident diagnosis. Take care of your eyes, see a neuro ophalmologist sp? optic neuritis can occur without it being MS, but is usually often one of the first signs of MS or many people with ON go on to develop MS. The optic nerves are not so easy to image on MRI, sometimes the slices can miss areas.
I hope you have had VEP test, and field tests and even photos of your discs for future comparions etc
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