Forum

PPMS - Coming and Going?

Hello

I am going to keep this as succinct as possible.

I am a 26 year old male currently undiagnosed. I have had symptoms since june now. I have ticked nearly every box on the list.

I believe that I have ppms (I know you shouldn’t jump to conclusions). My symptoms (generally quite subtle) always tend to come and go ie foot drop for a few days, mild speech diffculties, tremor etc etc. Nothing stays for that long but nothing entirely goes away (sounds vague I know). I have had no ‘acute’ attacks which would point to RRMS.

I have also had eye pain and slight blurring (ON?). From what I have read this is uncommon in PPMS?

Is it normal for PPMS symptoms to wax and wane?

My apologies if this is in anyway presumptious or unclear.

Advice appreciated.

RWTP

Hi RWTP, yes it is normal for ppms to wax and wane… although symptoms never entirely go. It can see-saw like nuts. One day really bad… the next not so bad. Or bad periods (like a few weeks or months) and then a ‘better’ period.

But don’t go jumping across those bridges until you come to them. I assume you are going through the normal route of seeing a neurologist and then going for MRI?

It’s important to keep an open mind as there are literally hundreds of conditions that cause symptoms similar to MS. Some are very easily treated… for instance lack of Vitamin B12… so hang on in there and see what the tests come up with. I assume your GP has done blood tests?

ON isn’t as much of a problem with PP as with RRMS… but some do get it. I do not have ON (have never had it) but I have double-vision and blurring most of the time.

It’s simple to see if you have ON. See an optician or your GP… they can tell simply by shining a light in your eyes. Another good home-made test is cover one eye and look at something bright red… and then the other. If the red looks brown or dark red through either eye it might be ON. But a small warning… you can get obssessed by covering an eye and looking at something bright red! If it is ON you will see the difference immediatly… so no need to do the test a hundred times a day… Once is enough!

IF you do get a dx of MS it might still be some time before you are told if it’s PP or not.

For now, as I said, keep an open mind. It might well be something else causing your symptoms. I know the wait is very frustrating but there is no shortcut to a dx.

And also keep in mind that IF it is PPMS it is really not the end of the world. It affects us all differently… we have one user on here who was dx over 40 years ago and is still living an independent and happy life. Some people with PPMS carry on working for years after their dx. For others of us it’s more of a challenge… but life is still worth living. Different to what we had planned… but still a good life.

Take care and let us know how the tests go (and if you are not being referred to a neuro you need to be just to find out what is causing the symptoms).

Pat x

Thankyou for your response.

It has made me feel alot better. I am going to see a neurologist next week. I don’t know how I feel. On one hand it is a step forward from the constant uncertainty I have existed in for the last 9 months. On the other hand it feels like a step closer to a diagnosis and confirmation of all my fears i.e change in lifestyle & outlook.

It has been a long road to even get this far. I have been to my GP several times insisting there is something wrong with me and finally got a referral. I have had some basic blood tests done and all of which showed nothing unusual unfortunately.

It’s all very surreal. I feel like my life has only just begun. I can’t make head nor tail of it.

I suppose either way I will have to equip myself with the emotional and psychological tools to deal with it.

What should I expect from my neuro appointment? how should I prepare?

Thanks

Hi again, glad you feel a bit better. I know how scary this can be. Below is an explanation of what is likely to happen at your first visit… hope it helps. (I’ve been meaning to write this out and save it for ages, so I can use as copy-and-paste… and you inspired me to do it!).

1st visit to neuro

Firstly, make a list of your main symptoms and how they affect you. Don’t make the list too long… the neuro will not have the patience to read it all and might think you are suffering from health anxiety. So keep the list short and to the point. Do not rely on memory… it’s very easy to forget everything once you are there!

Do NOT tell the neuro that you have been on the internet and believe you have MS (or PPMS). They hate self-diagnosis and will not take you seriously.

They will go through your health history with you… so if you can remember any episodes of unexplained symptoms in the past make a note of them… it will help.

They will give you a physical exam… but nothing that is painful or invasive. They will look in your eyes, test your reflexes, look at your muscle function, etc.

There is not one single test for MS. They look at a combination of things together… a bit like putting a puzzle together… so they will look at your symptoms, results of the physical tests, an MRI and possibly an LP (explained below). So be prepared for a long wait for a diagnosis (dx) if indeed it does turn out to be MS.

IF they think your symptoms are neurological (ie MS), they will ask you to have an MRI (scan of your brain and / or spine). They will refer you for that and it might take a few weeks to get the appointment (sometimes longer) and then you might have to wait a few weeks or even months for the actual appointment. Then another wait for the results.

If they see anything on the MRI that concerns them (they are looking for ‘lesions’ that show that your central nervous system in your brain has affected) they might then be able to dx MS… but quite often even then they are not sure.

If there is nothing showing on your brain, and they have eliminated everything else that can be causing your symptoms, they might ask that you come back in a year or so for another MRI. They will also want to see how your symptoms develop, or not, during that year.

If, even after seeing lesions on your brain, they are still unsure, they might then ask you to have a lumbar puncture. Again, a wait for an appointment date, then a wait for the appointment, then a wait for the result.

I’m sure you are getting the picture here… it’s one hell of a waiting game!!!

The lumbar puncture (LP) is to see if your immune system has been at work in your central nervous system (in the brain) but not in your blood. So they take a blood test and then take some spinal fluid from the base of your spine. If the blood is clear but there are ‘oligoclonal bands’ in your spinal fluid they will most probably dx MS (there are a few other conditions where this could happen… but if they have already suspected MS this will confirm their suspicions).

To dx PPMS, they will probably want to monitor you for a year or so to see how your MS progresses and if you have any definite relapses. Sometimes because of your history they can dx PPMS at this point, but for most people there’s another wait.

Very occasionally people do get dx with MS much quicker. This is when their symptoms are aggressive and present very much like MS. For most people it takes anything from a few months (unusual) to a year or two (more usual) to even longer.

So… a lot to take in. But by going to see a neuro you have started the first step of this journey. While all this is going on, take good care of yourself. Remember, anxiety makes symptoms worse… so get plent or rest and try to take a ‘one day at a time’ approach.

Hope this helps, (and hasn’t put you to sleep… )

Pat x

Hello again.

Thank you for writing such a long post.

I’ve done a hell of a lot of reading around this topic now. I feel pretty well versed. I have been floating around these forums for a while now.Its good to have it all written in one place.

Its when people say take one step at a time and get plenty of rest that i feel uncomfortable.

I am very active still i.e I go the gym and run long distances. I dont want to have to stop doing this. It hasn’t affected me in this respect. Touch wood etc etc.

I’m trying to continue as normal as possible where possible!

Thanks again. I may have more questions!

Appreciated

KRWTP//////

Keep doing what you’re doing!

Remember… it’s different for everyone… so absolutely no need to change your life one little bit.

Px