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Horrible neurologist/Tysabri experience

Please let me know what you think about the horrible experience I had when I last went for my four-weekly Tysabri infusion.

I turned up early and answered the usual questions about the state of my health. Since my last infusion, I had experienced one new symptom, which was not being able to straighten the fingers on my left hand if I had my palm facing upwards (able to do it fine if my palm was facing downwards). I also had had the recurrence of one old symptom, that is not being able to lift my feet off the floor when sitting. By the time I was answering the questionnaire, I could do both these things again - I demonstrated them.

Rather than filling out a prescription for Tysabri after giving me the questionnaire, the junior doctor (the minion) went off to consult the neurologist. When he came back, he said I was not going to be given Tysabri that day. I was to go home and I would have to come in again for an MRI and hopefully be given Tysabri two weeks later. My last MRI was in June this year.

I am very scared of having more than four weeks between infusions. I feel as if Tysabri is barely keeping my MS under control and also that losing much more function will impact hugely on my life. I can still walk and get up stairs but I can only just do these things and life will really change for me if I can’t do them. So when I was told I couldn’t have the Tysabri, I started to sob and beg the minion to let me have the drug. I promised that I would come in for the MRI whenever they wanted me to (I have objected to what I saw as unnecessary MRIs in the past). The minion told me the neurologist made the decisions but he would get the neurologist to come and talk to me.

The neurologist was in a (long) meeting and then had a consultation with another patient but I waited for about two hours and then I got to see him. I cried again and I think I begged - I definitely meant to but it’s a bit blurred in my mind. I couldn’t understand why he wanted me to have an MRI before I could have the Tysabri but I didn’t want to put him on the spot about it because I was terrified that if I antagonised him, he would never let me have the drug again. He insisted I must have an MRI and he arranged for me to have the MRI right then. I know this sounds unlikely but it is absolutely true. A nurse visiting the ward accompanied me to the MRI scanner, in a different part of the hospital. I took off my watch and metallic bits of clothing and had the scan and went back to the MS outpatients ward.

By this time, I was calm because I knew that having got the MRI out of the way, I could come back the next day for the Tysabri. In fact, I didn’t even have to do that. I hung around on the outpatients ward, wondering if I should just give up and go home and then one of the MS nurses came in and said the neurologist had looked at the MRI and said it was fine for me to have the Tysabri right then - it was mid afternoon by this time. The nurses on the ward said they had never seen anyone have an MRI and Tysabri on the same day, so I should clock it up as a ‘first person to’. I always feel a bit rough after Tysabri and I felt a bit worse than normal after all the crying (swollen eyes and a bit of a headache).

I had to cancel coffee with a friend because my afternoon was all used up. When I told her what had happened, she was completely incensed. She thought the neurologist had acted in a totally unjustifiable way. I thought I had caused the trouble by telling the minion about minor symptoms that had come and gone away again, giving the neurologist an excuse to force me to have an MRI that I didn’t want. What do you think?

Sorry about the ridiculously long post - didn’t look quite so long when I was typing it.

I wonder if there were concerns about PML hence them wanting another MRI? Regardless it doesn’t sound like their decision and rationale was explained to you which is likely why you found it so upsetting :-(.

I kept asking them about PML - or rather telling them that my new symptoms couldn’t be caused by PML because they had gone away. If you’ve got PML, the symptoms you get never lessen or go away.

I think they were just being very cautious, and that it was with your interests at heart, even though you saw it as unnecessarily officious.

I think they did extremely well to manage an MRI and to proceed with the infusion on the same day, in the light of how upset you were.

I’ve not been able to get an MRI the same day in the past, even going privately - though the neuro did tell me to try! He said: “Call in at Radiology on your way out, because if the machine’s not in use, you might be able to have it right away!”

I did ask on more than one occasion, but never succeeded. The best I ever managed was later the same week.

Despite your anger and resentment about it, I think I’d rather have an over-cautious neuro, than one who says: “Well, it sounds as if it’s probably OK - we’ll go ahead anyway!”

I’m not on Tysabri, but neither am I alright with: “Probably OK”. If there are any reservations at all about a proposed treatment I’m about to undergo (whether for MS, or anything else), I’d rather they erred on the side of caution.

I do hope this experience won’t put you off being honest in future, about anything that’s happened. I do think they need the fullest possible picture, to consider what’s safest for you. Although you don’t see it that way, I feel you actually ended up with the best of both worlds - maximum attention to safety, but still got the wanted infusion anyway.

I wouldn’t be very happy to receive a treatment, knowing my neuro had not wanted it without further checks.

Tina

x

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I agree with Tina in that the neurologist had your best interests at heart. However, what I don’t understand is why they didn’t explain why they wanted to a) delay the Tysabri and b) do the MRI. Surely it’s not that uncommon for a Tysabri patient to have a symptom that lasts a few days and then goes away? And why do some members of the medical profession persist in treating patients as though they are children? If they wanted to do the MRI, they could have told you what they wanted to look for.

If it was for evidence of PML, then surely it was because you have tested positive for the JC virus antibodies (and apparently the test has become more refined so they can pinpoint people at risk beyond the simplistic JCV+). Also, you would have needed to have tested + for JCV and been on Tysabri for more than 2 years. If this is the case, then they surely have a duty to inform you of your risk potential, advise you what symptoms in particular to look for and consult with you about staying on the drug.

If they were not looking for PML because you are not in the significantly risky category, then they should still have talked to you about what they were looking for. Just scaring you stupid is actually a bit irresponsible.

Having said that, it was fairly miraculous that they managed to do the MRI, look at the results and give you the infusion all within a few hours.

In your shoes, next month I would be wanting to know what it was that got them so worried, so much that they needed to do the MRI before infusing you. I would also want to know if the specific symptoms you described are a sign of something you should be concerned about if they return.

Sue

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My guess would be their rule is ‘any sign of new neuro trouble, you assume the worst until the scan shows otherwise’. If that is so, there is no way they were going to give you more Tysabri until they were sure you weren’t headed for big trouble. The speed with which they posted you in the scanner and had the scan written up and reviewed by the neurologist (unheard of in the NHS in my experience and yours too, I’ll bet!) might support this. But if my guess is right, why the blazes didn’t they explain! Maybe they just avoid reference to those dreaded three letters at all costs because they make people fall down in a faint on the spot. Or maybe I’m quite wrong and the cause of the delays was something quite different.

Never mind: all’s well that ends well. Whatever was going on, it is brilliant that you got it all done and dusted in a single visit. I am sorry that you had such a stressful day.

Alison

Can they see PML on an MRI? Maybe they can and that’s what they were looking for. I do have the JC virus but last time they tested my levels, they were in the very lowest category and I was told I was at very low risk of getting PML. I still think that my neurologist was trying to show me who’s boss by letting me know that if he wants me to have an MRI then I have to have one, whether I want to or not. He is pretty useless and practises extremely defensive medicine i.e. tries to make sure that no-one can even complain about him, no matter what stupid thing he does. I know this all sounds completely paranoid and I’m sorry, but it is what I feel.

I spoke to the MS nurse who delivered the good news that I could have the Tysabri after all, by phone the next day. I asked her what the neurologist had seen on the MRI that had lead him to letting me have the drug. She didn’t know but said that I would receive a written report about what was on the MRI, as normal. That did make me smile because no-one has ever said or written a word to me about what was on the MRI I had in June. That was partly why I didn’t want another - I felt like no-one even looked at the last one, which made me having it a complete waste of my time and NHS resources.

Now I’m going to share a bit of psychoanalysis I’ve done on myself with you. I think I have big problems trusting my neurologist because of examples of incompetent behaviour that I’ve seen from him in the past. I feel that he made me humiliate myself to get the Tysabri. All that crying - I despised myself for doing it but I’d do it again in a minute if the same situation occurred. I distrust the MS nurses as well because I think they cover for him and they don’t know much (I haven’t forgotten the MS nurse who told me that my Trigeminal Neuralgia was nothing to do with my MS). At least I know that I should be safe to get Tysabri next month - the MS nurse assured me I was booked in for it. I’m not so sure what will happen the month after that.

One of my friends suggested going to my GP and telling him what happened. At least I might have a different medical professional on my side if I cross swords with my neurologist again.

Finally - if you can sob when upset, I’d recommend it as a way of getting your own way with your neurologist. Be warned that it may make you feel bad about yourself if you do it, however.

Yes, they can. As I understand it, it shows up clearly on a brain scan and looks nothing like MS damage. If it is the case that they wanted to exclude PML (and, if you really had been in trouble, start treating it double-quick) then no amount of pleading and begging for Tysabri and promising them rubies if they spared you an MRI would have made any difference, Sewingchick. :slight_smile:

Alison

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But there was no sign that I had PML. I had one new symptom that had gone away and and one old symptom that had recurred and gone away. Also, I was completely with it - sharp as a tack. They only needed to ask me who had recently been forced to resign from the government (Grant Shapps) or asked me to name three drugs that people in the room had been prescribed for MS (Tysabri, Gilenya and Tecifidera) to know that I didn’t have PML.

And I wasn’t trying to avoid an MRI, I was trying to get the Tysabri I had been scheduled to have that day. I’m chalking the whole thing up as a surreal experience that I hope I never have to repeat.

hiya sc

just to let u know that the longest i have went between tysabri treatments is 7 weeks. i didnt notice any drastic changes between the 4 and 7 weeks. i guess thats cos its still my system?

hope it goes smoothly from now on!

ellie

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Hi SC, I am JC positive and I am on Tysabri every four weeks. The team that look after me are concerned about potential PML and are therefore cautious if I mention any new symptoms. I think the Neuro should have explained things to you in a better and more professional way but I think the other guys are right, your best interests were at heart.

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I think he should have explained things better as well. He could have actually come into the room where I was and explained why he wanted me to have an MRI, rather than sending the minion, who didn’t know what he was talking about. And he could have come and told me why it was later OK for me to have the Tysabri, rather than sending the MS nurse, who didn’t know why it was now OK.

It may be true that most neurologists are benevolent creatures, with their patients’ best interests at heart. But do we really believe that there are no nasty neurologists out there? Really? I think some of them are horrid, and I’m unfortunate enough to be stuck with a horrid one.

With the NHS under funded, and under staffed as it is, I’m baffled why you are adverse to seeing a junior doctor! The Minion as you referred to him. As I do not have private health insurance and cannot afford to be seen privately, I am grateful to be seen by any of them!

In your first post, you say, after waiting for 2 hours you did see him and he “insisted on an mri”. (Wasn’t that the time to ask him why he felt this was necessary?) Yet in your second post, above, you say “he could have come into the room where I was and explained why he wanted me to have an mri”. I thought he HAD seen you…?

I think you got yourself into a state which led to you crying and begging and unless you were going to be given that drug then, there was going to be no placating you. He didn’t make you do any of this. You say you have “trust issues” with this Neurologist and your MS nurse and I suspect that shows. I imagine all of this and your recent incident at the outpatients appointment, is noted. (I have worked in the NHS and know this happens). I really hope your next appointment goes well for you, and you get Tysabri as planned, but you would do well to remember stress and anxiety are not good bed-fellow of MS.

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Very true - but I am feeling better now. You are absolutely right that I could have avoided getting worked up on the day when I was meant to be having Tysabri. I could have done as I was told and come home in a calm way. But there would have been a lot of stress around the corner, waiting for my MRI appointment to come through. This has always, in the past, taken months. As I said in my original post, it was almost unbelievable getting an MRI on the day. The whole experience was very strange. I hope I never have to go through it again.