MRIs in PPMS

Primary progressive MS
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I’m posting this again because last time it didn’t show up. Apologies if it shows up twice! Not sure what I’m doing wrong!

MRIs in PPMS

Hi everyone. I’m new here. I’ve been reading a lot as you have a nice PPMS community over here. I’m actually from the US, so I hope you don’t mind me jumping in here.

I’m currently still in limbo, trying to figure out if this is or isn’t MS. So far my neuro is great and really wants to get to the bottom of things, but not an MS specialist. I’m 31, female, mom of 3 kids.

My question is about lesions in MRIs in PPMS. Everything points to PPMS for me, I’ve had no relapses, just a slow gradual progression of symptoms. Mostly in my legs and eyes, although my arms and cognitive functions are affected, too. At my last appointment my exam showed babinksi reflex on the right (no reaction on left), hyper reflexes in both knees, ankle clonus on both sides, spasticity and weakness. Also have an abnormal eye exam but need to see the neuro-opthalmologist to figure out what it means. Eyes aren’t working together well at all. Tremors in left arm (although I’m wondering and going to ask neuro if it’s actually clonus, it feels just like the clonus in my legs). EXTREME fatigue, heat intolerance, double vision, etc, etc. Obviously something neurological going on.

So I have had MRIs with and w/out contrast of my brain and spine and I have no lesions at all. Nothing. Some minor degeneration in my spine, but nothing that is interfering with my spinal cord, just some basic wear and tear that everyone gets. Other than that MRIs look great. Neuro said in my letter with results that there is nothing to explain my symptoms. I go back to see him in 3 weeks.

So, is this typical of PPMS??? Is there a chance that it is still MS even without any lesions? All my clinic signs seem to point to it, and most everything else has been ruled out. VItamin d is good b12 is good, no antibodies for lupus or any other things they have tested for. I take magnesium, vit d, calcium, coq10, and a daily vitamin, and still have the spasticity that gets so bad I take muscle relaxers at night so I can get some sleep. I would say that it’s been probably at least 2 years since things have been going on. Maybe more, but things started so subtley I was able to brush it off for quite a while. Now I am having trouble walking, can’t take a hot shower without turning into some mixture of jello and lead!! And am sooooo tired I’m having a hard time keeping up with my kids.

Also had a grandmother with RRMS, a second cousin on the same side with PPMS (both have passed), and now a son of a second cousin has been diagnosed with MS, not sure which kind, although from what I hear he was ignoring things way too long and is now pretty bad off.

ANyone have any insight? Did you have clear lesions when you found out it was MS? Is it possible they just can’t be seen yet? Or are looking in the wrong direction? Next step I believe is the lumbar puncture, but will find out more when i see neuro later this month

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Bump

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Hi Wendy and welcome to the forum…

Goodness me… I’ve read through your post twice and have to say it does sound like MS and yes, without relapses and with gradual progression it does sound like PPMS.

However it’s very difficult to diagnose without any lesions showing. No, that is not typical of PPMS. Like with all types of MS, there are usually lesions showing.

But of course that is not always the case. There are always people have all MS symptoms but no lesions showing… and it often means they are stuck in limbo for a few years (lesions might show up on a later MRI) or they get a ‘probable’ or ‘possible’ MS diagnosis.

It can sometimes be the scanner they are using that are not showing lesions… but as you are in the States and no doubt insured I would think they are using a good, up-to-date scanner. Read the ‘sticky’ at the top of the ‘Newly Diagnosed’ page by Rizzo… called ‘A beginners guide to the brain and MRI’. It gives more info on scanners and lesions.

The other tool that neuro’s use to help diagnose is a lumbar puncture (basically to see if the immune system has been active in the central nervous system… in the brain… and not in the blood). It might be worth you having one just to see if you get a positive result with that.

The other option would be to wait 6 months or maybe a year and have another MRI to see if anything is showing by then.

Very frustrating for you… I mean nobody wants a diagnosis of MS but if you have all the symptoms than actually it is better to have a name for it!!

I hope this helps. Do come back and ask any other questions you have… in the meantime, this forum is a mine of information and a great place for support and friendship… so I hope it will offer some comfort while you’re waiting for answers.

Take care,

Pat x

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Wendy… reading through your post again I see you will be having a lumbar puncture. That, if positive, could lead to a diagnosis of MS without lesions showing, esp considering your symptoms. So good luck with that. Px

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Hi Wendy, sorry to hear about your problems, its not nice when you dont know whats wrong. I cant really answer your question about lesions as i dont know the answer but im sure someone will be along soon that knows more about it. All your symptoms do seem to be MS but then again i know there are lots of neuro illnessess out there. I am supprised you havent had a LP already so yes i would think that will be the next step.

I first started having problems with my legs in 2009 (although looking back i think i had been having problems for awhile but just didnt pick it up) went in hospital, had mri(lesion in spine) and LP and was told i had transverse mylitis. had another mri in 2011(no change). but when i saw my neuro at the end of 2011 i told him i was worse. had mri in 2012 and saw him again in november(by now i was alot worse) he said the mri had not changed so i was sent to another neuro who i saw this January. He was an MS neuro who told me i had ppms, this was quite a shock as my first neuro had told me time and time again that it wasnt MS(even when i saw him in November). I now have loads of symptoms, cant walk very well, spasticity,hugs, numbness, bladder and bowel problems, foot drop, toes curling, fatigue and other little niggles. This illness is horrible but you have to put on a brave face else it will just wear you down.

Hope you get a dx soon, atleast then you will know what you are dealing with.

Lisa x

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Hi Wendy,

In 2008 I had some sort of attack. My GP thought it was just a virus. I recovered well after a few weeks so didnt see a neuro. Nearly a year later I started to notice trouble in my walking after I had been out for an hours walk with the dog. This gradually began to get worse so in 2011 I saw a neuro/ I had an MRI and LP. The LP was clear but there was a lesion on my cervical spinal cord. He thought that it was die to radiation treatment that I had in 1990. Anyway in 2012 I went to NHS. I saw a different neuro who suspected PPMS. I had another MRI and LP. The lesion was still there and brain MRI and LP was also still clear. He disagreed with the radiation theory. Then at the ent of 2012 I read an article that Avastin helps with radiation myelopathy. I went back to first neuro and had a course of Avastin. Then in June this year I had another MRI and the cervical lesion had resolved. The first nuero thinks the Avastin has done the trick and the second neuro thinks that in 2008 I had an attack of myelitis which has finally resolved leaving me with spasticity in right leg. Some neuro symptoms I have been told can evolve over a period of time and still be present if the initial problem has ‘appeared’ to have resolved on MRI.

The second neuro now does not think PPMS as he said that lesions dont resolve with PPMS. Could it be possible that you have been unwell, thought it was nothing but damage did occur and by the time you had the MRI the lesion(s) have gone.

My current symptoms are spasticity in right calf and quads. Positive babinski, clonus and hyper knee reflexes again only on right.

Take care and hope that you get answers soon.

Moyna x

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Thank you for the kind replies. This is such a nice group you all have here!

I did end up having a spinal tap yesterday. Got a call today saying I need to go back in and get blood drawn as they didn’t get enough and need to have more to do the analysis against the spinal fluid. CSF was clear so that is good. But I won’t find anything out until I get the labs done and they get it all done. Of course, the hospital is over an hour away so I need to go down for the 5 minutes it takes for them to draw blood and then drive back! But hopefully I can do it tomorrow. They said as long as I get it done this week.

I also had an EMG and they said it went well and things look good. So I’m guessing that means it was normal. Although they also gave me a thorough neuro exam at the same time and I ended up with 3 different neuros kind of scratching their head asking me if I was sure my MRIs were normal.

I don’t go to my neuro again for a few months. So I am just waiting it out to hear the results from my latest tests. Neuro did a lot more blood work last time I was in and of course everything came back normal. So we have ruled out quite a bit. At this point I’m not sure what else it could be if it isn’s PPMS. I know it won’t change anything if that is the diagnosis I get, but I feel like I just want to know what is going on. If there is nothing I can do then at least I can accept it and move on and realize what is in store for our future. Like, right now we live in a 2 story townhouse and if i am going to keep progressing we will have to move into a one story at some point.

Thanks for reading, and I’ve been picking up so much info here. I’ll let you know when I find anything out about the spinal tap.

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Hi Wendy

I also battled to get a diagnosis. My MRI’ S showed lesions but not enough to give a positive for ms, neurological exam proved a lot was wrong but then I also got referred to a lovely Neuro who did all the tests and only the final test I.e. the lumbar puncture gave the definite diagnosis and with my history it was decided that it is PPMS. I hope you get answers, it does sound like ms, but as everyone tells you, neurological problems are hard to diagnose.

Take care and good luck.

Cath

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Min Pat has spelled it out perfectly I hope your Mum is able to ccope with the upheaval MS is bad enough but getting some help in place will make life more aceptable, even something as simple as a stool to go by the sink makes all the difference and by going to social services they are trained in helping make your mums day; to day living easier. Hope you can get some stuff in place for herand smile it dont half confuse the MS demons . XXX Don

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Wrong post so\rry trouble with the board it is playing up today and so so slow to accept posts grrrrrrrrrrrrrrrrr Sorry Don

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Sorry Wendy I posted the above for another post. I have now read your post and yes it sound much like MS and PPMS at that. I have a sister with PPMS who has lesions that show up like so great it is a MRI easy peasy diagnosis. My PPMS lesions shows now but did not for a couple of years when first diagnosed 20 years ago. Ihad a lumber puncture and that confirmed it but it was over 20 years ago I would hope with advances in technology they would be able to see the lesions easier now but mine were tricky little critters early on but are not so shy now. Hope that you get it sorted XX Don

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I was diagnosed 3 and a half years ago, it took 4 MRI scans a lumbar puncture and countless blood tests before i was confirmed as having MS,all in all it took 18 months from first sign of symptoms to diagnosis.

The first 2 MRI scans did not show any lesions at all,the third scan showed one lesion and the fourth showed a couple more which confirmed MS.

I think you have to have more than one lesion showing up to be diagnosed hence the name Multiple Sclerosis

Because it took so long it was torture not knowing what was up with my body and i was actually relieved to finally find out what was wrong with me.

Good luck Wendy, i hope you find out soon so as to put your mind at rest.

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I have had so many MRI’s, LP and blood test but it seems that my Neurologist is just as taken back as I am. No lesions on my brain or in the CNS. My LP came back as positive for a autoimmune disorder but they are going by my symptoms and not by what is saying MS. I’m in a wheelchair, bladder difficulties, a colostomy and also the numbness and tingling symptoms. I’ve got bad back pain and fatigue. I’m in physical therapy but this has been going on for years. Now I’m taking the new Ocrevus infusion. I see it helps, not as fatigued, no worsening of my symptoms but I gotta wonder if it is something else. Is anyone experiencing this type of problem? I always thought multiple meaning many and Sclerosis meaning scars, MS many scars. I just deal with it as I have one of the biggest MS specialist from the University of Miami. Any thoughts?

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Hi there, this thread is 5yrs old so you might get more responses if you start a new thread.

Also, I guess you might be in the US if you’re getting ocrevus?

Sonia x

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Yes I figured that would be the case but thought I would try anyway. Thanks for the tip. Yes I’m in hot and humid South Florida. The only one thing that’s good in the winter I don’t get to shovel sunshine. Take care.

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