Feeling Confused.

[Declan]

Hi all,
I’m feeling a bit confused about what I'm being told by Neurologist etc


I recently had my first neurology appointment after a brain MRI, in the report they mentioned lesion damage possibly caused by my chronic migraine but couldn't dismiss demeyelination. The neurologist pointed out 8 lesions!!! but said not to worry, she didn't think it was MS (I was over the moon happy) but thinks it is migraine related.
After going through all my other symptoms which are all possible MS symptoms she decided that I would benefit from 3 days of IV steroids - Methylprednisolone - to help break the symptom cycle as she put it.


Thursday I finished the third day and I was asked by the nurse in the infusion unit what other MS medications am I on? So I explained I was not diagnosed and told her what the neurologist had said. The nurse told me the same as what we all know and that MS can take a long time to be fully diagnosed and to contact the Neurologist in about 3 weeks if there is no improvement.


I'm really confused, could it just be too early for something to be confirmed, I'm really worried because after my last bad set back (as to call it) I've fallen three times, been left constantly with a bad limp/walking ability and blurry vision.


Anyone gone through something similar?

[22cyclist]

Hi Declan: It sometimes does take a long time to diagnose MS, however, if you just finished IV seroids you shouldn't be having symptoms (new ones) for at least one month. That is how steroids work. Since your lesions were not consistent with MS, its possible you may have a mimic and that is why the steroids did not work for you. Have you been tested for all of the mimickers of MS? There are about 400. Your neurologist will help with walking you through that. You need to call her and tell her you are having these symptoms.

Is the blurry vision in one eye or both? What other medications do you take?

Take care
Lisa

[Declan]

Hi Lisa, thank you for your reply.

My word 400 mimickers!!
No nothing has been mentioned yet, although blood samples have been taken.

I think the thing that can be seen is that I have suffered with migraines for a long time, for which I take Sanomigran, Immogran, and Naprosyn.
My vision is blurry a lot of the time but I was getting periods of extreme blurriness and double vision in both eyes. My walking was terrible, but today I'm in less pain (which is fantastic) and my wife said I was walking faster too.
Also the constant fatigue isn't as bad, so hopefully I'll see some benefit from the steroids or like the neurologist said, it may break the cycle.

Thanks again, Lisa

[jreagan70]

My vision is blurry a lot of the time but I was getting periods of extreme blurriness and double vision in both eyes.

Hi Declan:

Neurologists aren't trained or equipped to deal with visual issues. Have you been to an ophthalmologist to evaluate and quantify your blurry and double vision? If not, it would be a really good idea to do that. It might even help in speeding up the diagnosis process.

[Declan]

Hi jreagan70,

Thank you for the reply, and I agree it might help in speeding the process up. Yes I have an appointment sent up for later in the year. Getting initial appointments here in Ireland is a bit slow, but once you're in their system the service improves.

All the best,
Dec.

[Declan]

Wow what a difference!!

I don't know what happened today but it seems the IV Steroids have kicked in.

My usual day would consist of walking very slowly and after 50 yards the limp (as to call it) and continuous knee buckling would kick in. However today I walked at a normal pace for over a mile with no problems. I've cut the grass and feel really happy and good in my self. Don't get me wrong I feel tired, and my head is a bit swimmy but nothing like the previous couple of months.

I know it's only one day, and you have to take each as it comes but... Do the steroids have such a drastic change normally?

Is this a good thing considering the confusion as to why I was given the steroids originally?

[malaholic]

Do the steroids have such a drastic change normally?

Hey Declan -

I think that as in so many things, everyone responds a bit differently. But yes, it's entirely possible for the steroids to make such a dramatic change. For me I've only had them once and by the time I went home after my 2nd of 3 doses I already noticed a big improvement in my level of dizziness and blurred vision, which then continued to improve for several weeks (though I've never quite gotten back to "normal").

I'm really glad that you are finally starting to see some relief after your course of steroids and I hope that your symptoms continue to improve. I do hope that what you are experiencing is caused by something more easily "fixable" than MS, but either way you are welcome on the board and you are in good company here!

[Declan]

welcome on the board and you are in good company here!

Thank you for your warm welcome Malaholic.
It's been a good week, each day felt a little bit better. Hopefully it'll continue.
I hope you are keeping well, and again thank you.

[Declan]

Sorry for bumping my old thread but as it is related to the original post, I thought it was the best place to post...

Well it's been 6 weeks since the IV steroids and for 5 of those I felt great, like my old self. No symptoms other than headaches were present, and I had no problems walking, I was really happy. Spoke to my GP and he was pleased and when I told him about my original confusion, he told me not to be, that the treatment given is for MS.

Over the last few days I've been hit by fatigue again, my various pains are creeping back in and I'm starting to have problems walking again (right hip pain, knee buckling, and limping). I'm back to see my GP in the next week, so I'll let him know about the changes.

What I wanted to ask was, is this normal for the symptoms to return so quickly?

I was so impressed with the results I now feel really down about it all, that things are going back to the way they were so soon.

[SNOOPY]

Hello Declan,

I'm starting to have problems walking again (right hip pain, knee buckling, and limping).

Have you had a MRI of your Lumbar area? This would not be for MS but to look for a back problem that could be causing your current problems listed above.

The confusion is you do not currently have a diagnosis of MS and the assumption is, since the steroids helped (temporarily) that what you are experiencing is due to MS. This may not be true, although your Neurologist is the only one that can determine it to be the case or not.

Steroids are anti-inflammatory and can be helpful, and are used, for many different conditions.

In the case of Multiple Sclerosis steroids are used for an exacerbation (relapse, attack, flare-up). They may or may not help and symptoms can come back. Steroids do not change the outcome of the disease. Steroids might allow for an exacerbation to resolve sooner than without steroids but, sometimes not.

Working with a Physical Therapist (PT) can be beneficial (for some) to improve mobility. If you are not walking correctly that can cause limping and hip pain. Many times knees buckle due to lack of muscle strength/tone and PT can help with that.

A PT can show you the proper exercises/stretching which will work all the muscles that help support the knee and leg, in doing so knee buckling can be stopped. This is true if you have MS or not. But, it is important to make sure you do not have a mechanical (herniated/bulging disc, ect) that might be causing a problem with your mobility.

[Declan]

Hello Snoopy,
Thank you for taking the time to reply, it is appreciated.

Have you had a MRI of your Lumbar area?

I was going to ask for this to be done, well a spine MRI to rule out demylination at the very least, I had not considered it for determining a back problem, so a good suggestion that I will mention to my GP on my next visit.
I will also look into working with a PT, I would benefit from it either way things work out. I do walk a good bit when things are working well, but extra exercises wouldn't hurt.

Just to end with a question,
Is it becoming more of a practice to use MRI than Lumbar puncture now a days? - I'm sure I read that somewhere, but it would be good to hear of people's experiences.

Again Snoopy, thank you.

[jreagan70]

Just to end with a question,
Is it becoming more of a practice to use MRI than Lumbar puncture now a days? - I'm sure I read that somewhere, but it would be good to hear of people's experiences.

Hi Declan:
"Becoming" isn't the right word. The practice of using primarily MRI to diagnose MS has been in place for many, many years. The 2010 revision to the McDonald Diagnostic Criteria for MS brought MRI even more to the forefront as the primary diagnostic tool and relegated other testing like VEP and lumbar puncture to supporting roles.

The results of a lumbar puncture are non-specific and can't be used in and of themselves to diagnose MS. MRI results aren't used as the sole determiner of an MS diagnosis either, but at least MS lesions have a particular way that they tend to look on an MRI, so an MRI can be more helpful in a diagnosis of MS than a lumbar puncture. MS is more of an overall clinical diagnosis, but MRI carries the most weight in making that diagnosis.

MS is only one condition in which MRIs are used for evaluation. MRIs are used even more frequently in the evaluation of mechanical issues like joint or muscle or soft tissue damage. In back pain and mobility issues, MRIs are used to look for spinal issues that can mechanically impinge on spinal nerves and cause symptoms in that way. So an MRI can be useful, even necessary, in evaluating pain or mobility issues that can't be explained by MS.

it can be interesting to hear about other people's experiences, but when you want to know information about diseases and how they're evaluated and diagnosed, it's best to stick to the straight facts. Experiences are only experiences, and the stories can be factually wrong and misleading.

For diagnostic facts about MS, it's best to stick to the original scientific article: http://onlinelibrary.wiley.com/doi/1...ana.22366/full.

[Mamabug]

Thanks for updating us, Declan. I don't remember that I followed your original Jine posts, so it was helpful for me that you updated on the same thread so I could learn some background.

It does seem somewhat unusual, to me, that you would have old symptoms recurring so soon after their resolution following steroids. Just keep your neurologist up-to-date on your symptoms. And, be patient. Sometimes, MS takes a long time to diagnose. That's why we have this Limbo Landers forum on MSWorld.

[Declan]

Thank you jreagan70for your reply and the great information, it alone can be confusing.
I'm heading over to the link you posted for a good read.

Thanks again

[Declan]

Thanks for updating us, Declan.

It does seem somewhat unusual, to me, that you would have old symptoms recurring so soon after their resolution following steroids. Just keep your neurologist up-to-date on your symptoms.

Hi Mamabug,

Thank you for taking the time to post a reply and catch up.
Yeah I thought it was quick that the original symptoms were starting to creep back in again. That is why I did feel a bit disappointed. And I will definitely keep the neurologist updated. I have an appointment next month with her.
I have found the help here on MSWorld fantastic, especially the Limbo Landers Forum.

Thanks again, Mamabug