Where to go from here?

New diagnosis and before diagnosis
1

Hi all

So today I had my third neuro appointment and as predicted it was the normal speel from the neuro and I walked out from the appointment feeling as if this diagnosis will never come. (Not that I actually want MS, I just want to know where I stand.)

Up untill now, I have had a brain and spine MRI, which came back as showing lesions on my brain and also one on my spine.

I have had a lumbar puncture and this has come back as positivie for having O bands. The neuro really didn’t want to discuss the results in detail and just said that it shows that a further episode/ attack is possible, he just doesn’t know when it will occur.

He states that my previous medical history, points to what he believes were MS related but because he didn’t whitness them, (it was before i was reffered to him) he cannot say for sure that it was different episodes. (e.g. multiple) He does believe however, that the likelihood of me having further episodes is high.

He has offered for me to have “nerve conduction tests” and stated that if one of these tests were to show that a nerve impairment was present, then this would help me with diagnosis. The problem is he said that about the Lumbar Puncture. i didn’t want to have the LP, but I was led to believe that if I had it done and it came back as positive then he would give me a diagnosis.

He has suggested that my next appointment should be in 9 months time and its best “to wait and see what happens”.

The last time I saw him he said that I would probably be eligable to start on Aubagio, if my LP result was to be positive.

Today he said that there was no drugs which would be available for me to take and that my treatment for the “likely MS” would remain unchanged. Which I guess will still be sweet FA!

Is it time for me to ditch this neuro and ask to be refferred to a different one? Or is this the norm with them all?

Also, does anybody know what the qualifying criteria for a Macdonald diagnosis is?

2

Hi Anonymous

I think we are in pretty similar situation - I had one MRI showing lesions on my brain (nothing on my spine) and a second one showing slight improvement (no new lesions and somewhat less inflammation). I also had a lumbar puncture weakly positive for O bands (raised IgC and IgM levels - not sure if it’s the same thing).

The first neurologist offered interferon beta right away and the 2 others I saw afterwards suggested a wait and see approach and MRI every 6 months. I chose to go with the second opinion for now as I have other health issues going on and I was afraid the heavy treatment would make them worse.

Your neuro seems to be going back and forth about the treatment etc. which would confuse me. But the “wait and see” approach seems commonly recommended to people who seem to be in limbo. It depends on what your choice is deep down - if you feel more comfortable choosing to treat it right away then go for a neuro who would. I chose to wait but have changed my diet, take alternative treatments. At least for how long I can last on just that.

Good luck!

3

Hi Lara

I am sick to the back teeth of my neuro, I really really am. He dismisses every sensory and physical symptom and which I have had and wants me to wait for my next debilitaing relapse before deciding on my diagnosis (if it ever comes) and moving me onto a DMD. I understand that to get diagnosed you need two seperate episodes over time but he dismisses everything. He says that in his view a relapse will be something severe such as going blind in one eye or loseing the use of a limb or limbs.

What frustrates me is that is I am “highly possible” for having MS, then surely prevention has to be the better option?

Has anybody succesfully changed neuro and if so how do you go about it?

Thanks

4

Hello anon

If you want a second opinion, you simply go back to your gp and requet one.

Would you like to describe what some of your day to day symptoms are anon. The neuro seems to be doing pretty much the right things from what you say above. Of course, I don’t know the full story. I’m just concerned you may switch and be no better off.

Take care xx

5

Hi, I was given the run around re diagnosis for years. I saw 16 different neuros in as many years. I asked to be referred to a MS specialist and he didnt want to see me…he just advised a 2nd LP.

None of my many tests proved ms. But my clinical sypmtom were typical of PPMS.

But your`s sound more likely to lead to a firm diagnosis of ms to me.

I would say have the nerve tests and hang in there…swapping neuros now, would probably do no good.

luv Polx

6

Hi anon, I think I would be tempted to agree with Poll, have the nerve studies and take it from there, although nine months seems a long time off. I would take some one with you next time, who might be able to be a bit more forceful on your behalf. I always take the hubby because he is a force to be reckoned with if he feels I am being messed around. Sometimes you need someone like that with you. Hope you get some answers soon. J x

7

Thankyou for the replies, I just feel as though I am being left to “suck it and see” by my neuro, who tells me that it is highly possible for me to have another attack/relapse according to the tests I have had done.

OK, I know he tells me that this might not be for another five, ten or twenty years and I can understand where he is coming from and not being able to give me a diagnosis of MS until I have another attack, (if thats what I have) but being left like this is like torture. Why can he not give me some indiction of what I have?

I have been tough with him, in fact, I am constantly apologising for sounding too argumentative in our meetings as I find him so fustrating. I feel as though I am only going to get an answer when something pretty scary happens.

I mean so far, i’ve had episodes of dizziness, which I feel is from a build up of pressure in the back of my neck, numbness in both of my arms, a right leg which literally keeps kicking out and going stiff. My bladder has caused me countless amounts of issues along with problems at time with my bowel. I lost some vision in my left and had burriness for about six weeks (which touch wood is better now) along with total numbness in my right arm and hand. All these episodes have lasted for ranging times from weeks to months, but he says that these are not symptoms.

8

Is this Neuro specialised in MS? Or is he a general neurologist? This is easy to check out on line on the GMC website if you know his name…which should be on your appointment letter. xx

9

Hi Blossom

He’s a honorary consultant neurologist working at MS clinic. I looked at GMC website and it doesn’t say that much. Well definatley nothing about MS, only that he is a neurologist.

Whenever I get a appointment letter form the hospital, his name is not on the doctors secretarys list so its hard to contact his secretary at the best of times. I know the names of the bigwig MS doctors at the hospital but this one isn’t a ame you hear banding around.

He referrred me to a MS nurse about six months ago, just to meet them, in case I need them in the future. Which I found (and still do) rather odd, without a DX

10

I have to say…giving it more thought. It is odd why he won’t give a diagnosis based on positive MRI and lumbar puncture. I was diagnosed with ms by a Neuro who wasn’t specialised in ms…he knew is stuff though. I still requested a referral to an ms specialist unit because I struggled with the diagnosis. Ask your gp to refer you for a second opinion, if that’s what you feel you need. Just make sure it’s too a Neuro that’s specialised in MS. Good luck xx

11

I know Blossom, I think that he knows its MS but just not what type it is! I looked on this site and found some info on the Macdonald criteria for diagnosing and it read:

"The McDonald criteria are the criteria required for a diagnosis. Although the McDonald criteria say it is possible to clinically diagnose MS without any tests, they recommend that investigations are carried out so test results can provide further evidence of MS. Diagnosis of relapsing remitting MS rests on: two relapses, separated by more than 30 days, OR one relapse and an MRI scan three months later that shows new lesions.

To determine if a person has secondary progressive MS, they must have: had relapses in the past, shown a steady increase in disability for at least six months, whether or not they continue to have relapses.

Primary progressive MS is diagnosed if there have been no previous relapses and if there is: a progression of disability over at least a year, an MRI scan that shows lesions consistent with MS, evidence of MS detected by examining the spinal fluid collected during a lumbar puncture (this is the only situation where a lumbar puncture is needed to diagnose MS)."

I just wish I knew what he was trying to do and if seeing which type I have, at least tell me that was what he was doing!!!

Thanks

12

Say yes. You haven’t run out of road yet, and the nerve conduction test results will be another piece of the information jigsaw. It does sound as though things are very finely poised at the moment, so any extra little piece of info leading in a particular direction might just tip the balance. Got to be worth a try, and these tests are way less scary than an LP. (Or so I hear - I haven’t had them myself, although I have had an LP!)

Alison

x

13

Hi anon, I wonder if like you say he does think ms is extremely likely, and doesn’t want to put it down to an isolated case, as you say, he would need to witness multiple examples of relapse to label it ms. It seems to me that rather than dismiss you, he is using a wait and watch approach so as not to send you off with a dx that might not fit. If it were an isolated case you wouldn’t get the ms drugs, and until he can see the type, as you rightly say, then he will know best how to treat you. My experience as a nurse as well as a patient, is that the ms specialists are really only a hundred percent fab when the dx is in place. Any neuro should be able to dx it, the guidelines and protocols are there, it doesn’t take a specialist to dx. However, a specialist is the best one to treat and monitor you. Take heart, you are in a better position than most, and it’s a waiting game whichever way you look at until the dreaded next relapse appears and then you may get the dx that gets you the treatment you need. Stay strong Hun, and I hope you get the answers you need soon. Take care J x