Forum

First questions

Hi all,

I recently posted under Newly diagnosed (ish) explaining that they say that I’ve had this for about 24 years with a numb torso for about 6 months 23 years ago, numb feet about 12 years ago, both lasting about 6 months and for the last ten years bowel and bladder issues and then burning feet and legs for about 3 years. Finally last November I had a brain scan revealing lesions.

My first question is ( more accurately questions are)what type might I have? Was the stuff years ago relapses? If so what is the stuff now that doesn’t seem to be going away? How are they going to find out? I think they’re planning on seeing me every few months and checking whether things have got worse, will they do any other tests. Is the only way to check MRI’s? ( hope not, now I’m in my forties it seems to me that the hole in the machine has got smaller, Surely I haven’t got bigger!). Is the question and answer stuff the only way they will find out? I feel like I’ve been in limbo for a long time before diagnosis and am now in another type of limbo.

Next questions are around DMD’s. Would I be a candidate for these considering it would seem to be that at this stage it is unknown what type I have? What do they do? How do they work?

Lastly, this burning seems to be permanent now and I am not enjoying the side effects and no relief offered by the drugs I am trying, first baclofen and now gabopentin. Last time I saw my Neurologist he mentioned that he thinks cannabis based treatment will become legal at some point but went no further. I saw somebody else mention CBD stuff on here and the CB brothers. What is it, has it had THC removed, does it work, are there any side effects and will it show up on drug tests should they be introduced at work?

Many thanks in advance and Happy Easter,

Derick

I should mention that I had those potential tests with the little electric shocks and one where I had to stare at a screen with patterns on, they both showed that the pathways are a bit slow.

Hi Derick, You said in your first post that you have been diagnosed. Your neurologist or MS Nurse will be able to tell you what type of MS you have. No one on the Forum can do that. All I can say is that MS has a sneaky habit of transitioning from one form to another over the years. People who have been diagnosed often realise that they have been showing little signs for ages without it troubling them (much). How do they going to find out what type you have? Your neurologist will use the McDonald Criteria to put a label on it. You can look it up if you’re a masochist for jargon. Will they do any other tests? There’s not much point, having already got a diagnosis. Is the only way to check MRI’s? No. Other tests used are Evoked Potential (flickering chessboard screen), Nerve Conduction, Lumbar Puncture and blood tests. There is no one laboratory, MRI, or clinical test that definitively rules in or rules out MS. Is the question and answer stuff the only way they will find out? Diagnosing MS is all about eliminating other possible explanations for neurological symptoms. Would I be a candidate for DMD’s? You’ll have to ask your neurologist or MS Nurse. It depends on which type of MS you have. There is no cure but some treatments halt or slow the progression of the disease. CBD is Cannabidiol. It is the LEGAL extract of the cannabis plant available in the UK as drops, spray, an oil or capsules. Some people find that it helps with neuropathic pain and spasms. It has had the THC, or “trippy” compounds removed. I have no idea if it’s use will show up on drug tests but it’s safest to assume that it will. I hope this helps. The Forum is a great way to get to grips with MS. Best wishes, Anthony

Thanks Anthony. I wish I had joined this forum a few weeks ago, it’s really helping me to focus on what I actually want to know. I have seen the nurse and consultant a couple of times since diagnosis and been unprepared and not really asked anything except whether I was ok to drive still. If I’m honest, when I saw the nurse after diagnosis my questions were all variations of ‘ARE YOU SURE ABOUT THIS ??? Only when I saw the consultant again did I say that I accepted his diagnosis.

I think I will have to push for some clarification on the type. The only thing that the consultant has said when I spoke to him about going on a course they do for the newly diagnosed is that I might find that I am rare. He said that I am a sub set of a sub set in that the disease is relatively rare anyway and I am male who has had it but been undiagnosed for a long time with relatively few symptoms.

Anyway, thanks again and I’m really glad I joined this.

Hello Derick

If the neurologist accepts that the occurrences you had in previous years were relapses, then you could only be diagnosed with either relapsing remitting MS or secondary progressive MS. These two could be considered as one ‘type’ of MS. People generally begin with relapses followed by partial or complete remission. Later in the course of the disease, many people move on to a progressive form, where relapses stop and any further disease activity takes the form of (often slow) progression.

If its RR, then you might be offered disease modifying drugs (DMDs). I say ‘might’ because you have to have had two relapses within the last two years to qualify for a DMD.

If it’s decided that it was RR but is now SP (ie has moved from relapsing to progressive) then you won’t qualify for DMDs.

The point of DMDs is to reduce the number and severity of relapses. If you have moved onto the progressive phase, you won’t be having relapses so a DMD wouldn’t work.

But it sounds like the neurologists are seeing you as an unusual specimen. In that you may have been having very few spaced out relapses over many years.

The fact that you don’t seem to be having any remission from the more recent disease activity, may mean that the neurologists decide that you have a progressive form of MS. Either that it was RR and is now SP, or that it is in fact what’s called Primary Progressive. This is the more unusual variety, whereby you never have a relapsing phase but just head straight into progression. If the neuros decide that the early problems were not in fact relapses at all, they could diagnose PPMS.

But, it could still be RR, just a very slow remission process.

Neurologists in general hate to diagnose PPMS in the early days of their testing unless they are absolutely certain. Essentially because until some time has gone by, they don’t know whether you are still likely to have improvements. And if there is any possibility that you might be RR, you could be eligible for DMDs.

You may not be able to persuade the neurologist to make a decision about what kind of MS you have. The point he might be making about you being a sub set of a sub set could be related to his feeling that perhaps you have some variety of one of the types that has presented very differently to normal. But anything said related to your diagnosis really needs to come from him.

And you are right, when you know nothing about MS, you have no idea what questions to ask.

What I’d be asking in your position is:

  • Does the neurologist think the early symptoms were relapses?
  • Does he think you still have relapsing MS?
  • If so, will he now prescribe DMDs? And if so, which?
  • Is he leaning towards your now having a progressive form? (If this is the case, to be honest it may not matter much whether it’s secondary or primary.)
  • If it’s progressive, are there any drug treatments, even drug trials you could be considered for?

Leaving aside the type of MS, I would also ask for a different drug for the burning feeling. At what time of day is it at its worst? If it’s the evening and through the night, ask for Amitriptyline. This in higher doses is a type of antidepressant. But in low doses it helps with burning pain. But you need to take it it the evening as it’s a drug that has a sedating effect. If the pain is worse during the daytime, ask to swap from Gabapentin to Pregabalin. It might work better.

If you don’t have spasms or spasticity (a kind of tight feeling in your muscles), then you could ask if you need the Baclofen.

Keep asking questions Derick. The more you know you better you will manage your MS.

Sue