5 years ago
Medical Mystery

Hi all, I was hoping someone could ease my overactive imagination please.

I received a letter from my neurologist just before Christmas that has troubled me. It is a letter to my GP and I have been CC’d a copy.

“As far as i can see from the notes, this lady has persistently raised lymphocytes and I could not get any sufficient information why it would be the case from the clinical letters. It is highly likely that she has some ongoing infection. I would start CT marker typing. I wonder if you would be kind enough to arrange this at your surgery”

OK, so i’m on Tysabri, JC + and I’m thinking ‘oh god brain infection’.
Thing is, I feel the picture of health right now.
Anyway, I’ve had so many blood tests since Christmas that I’m not sure I have any left in me! All my fluids have been tested.
After a wait from my GP, he came up with this answer for me today:

“I don’t know”

Arghhhhhh!!! Any ideas??!

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@moshy, from what I’ve just read, these Lymphocytes are the soldiers of your immune system. Basically, they seem to reside in your blood and increase in number when the body is fighting an infection.
Now, this infection could be viral, which is almost a GP’s favourite, as I believe there’s no treatment for a viral infections.
I’m sure both your Neuro and GP are monitoring specifically for any sign of PML. So, it could just be another run of the mill infection, which the body will despatch and then things will return to normal?
If you’re concerned, give your Neuro a call and see what he thinks.
I’m not medical, so these are just my thoughts.

Hear hear stumbler back to neuro to get full explanation ! Once you have ms you automatically think its related but it may not be we are still at risk to everything else .all the beat femke xx

Thanks @stumbler

I’m just highly pissed at the moment. Sending me a letter right before Christmas where I have to google search most of the key words before I can get my head round what it’s trying to tell me.

The first think I saw when i looked for lymphocytes was leukemia!!

The only thing my neurologist achieved was it made me panic for probably no reason.

This makes me angry sending you that letter being aware you wouldn’t be able to understand fully what’s going on ! I think you should mention this to your neuro what impact the letter had just before Xmas . Sorry to come across so angry but I really feel for you ! All the best femke xx

@moshy, being pissed is totally understandable. I’m sure there was someone else involved around Christmas time, who said, “forgive them, for they know not what they do”!
You’d think on their salaries that they would think about the impact of their “throwaway” comments.

Agreed. I don’t think the impact of that jargon filled letter was really considered.
Thanks for your support guys. I guess all I can do is be patient and wait for a verdict on this mysterious infection that I seem to have!
I’m hoping the results reveal that I have a secret super power!

Hi @moshy I am also on Tysabri (today was number 3!) and my lymphocites are also elevated. My neuro told me that around 6% of people taking Tysabri develop persistent neutralising antibodies, which are usually evident from around three months of treatment. However, a higher percentage have raised lymphocites from the 2nd to 8th infusion.

I agree with Stumbler that speaking to your neuro should clear up any confusion or worry you may have. Don’t let this get to you, this could be the way your body is adjusting to the medication.

Best wishes,

@moshy, if you do have a super power, will you turn up in a “Wonder Woman” costume? 💡

Oh for goodness sake some doctors have no idea what their letters can say to someone who is not medically trained. Both your neuro and your gp are at fault here I think. You are going to have to speak to them again to get it cleared up. You poor thing I sympathise. X

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