Has My neuro Missed Something?

Everyday living
1

I had another MRI last October and was told there was no change from previous ones. As a result they are still unable to diagnose me.

I had this done privately and while passing the other day I decided to call in to the clinic and get a copy of the scan report.

Now on it the radiologist has said that there is a 2cm lesion on my thyroid which was not there on my previous scan and he recommended that I have an ultra sound on it. This lesion was not mentioned by my neuro to either my GP or me. I have shown the report to my GP but his theory is that the neuro must have thought it was nothing to worry about. I have no appointments to go back to go back to neuro as I have been put in hold until I have more or different problems that may warrant a new MRI.

I know that I should not google but thyroid lesions can be a sign of thyroid cancer. In some ways I feel the neuro should have followed up the radiologists recommendations.

What should I do now ? I feel that my doctors feel that I am a pain in the butt !

Regards from someone with dropfoot and spasticity and still no diagnosis !

Moyna xxx

2

Hi you could write to your neurologist and ask them about it. I would do that if it was me.

xxx

3

Hello there,trying times for you.When I was diagnosed oh so long ago in 2001 there had to be positive results in three tests: Lumbar Puncture,Visual Evoked Response and MRI.It was various symptoms which initially triggered the six month long investigation.

Are these tests still required or are there other ways of diagnosing MS? May I humbly suggest this is the question which you need an answer to. The appropriate tests need to be performed,then a suitably qualified individual needs to draw a conclusion from the results.

I’ve learned that it is the secretaries who have the power to dictate how and when things are done…Top Tip

Best wishes,

Wb

4

I would think any lesion on thyroid should be investigated surely. They are useless hun really useless.

On my very first MRI, i paid for like you as i wanted to get back to work, they found a large area of high signal foci lesions in the deep white matter of my brain.

On my report it said these could be due to demylination BUT because of my age 1951 they decided it was more likely to be aging…i kid you not. Never mind all the symptoms I was having lol…just ignore them…even showed i had problems with nodes on spine, and disc degeneration yet not one person told me about either.

I was lucky i have an uncle in Italy who is a radioligist and my mother sent him my films, he told her if he had written the report he would have put it down to demylination event.

I truly realised after paying that no matter what you do, its always going to be a long road to travel and for me it has been but i got there in the end.

I would talk to your GP and get this looked at again personally. Also shouldnt you have another appointment anyway with your nuero.

5

Thanks All. I think that I will ask my GP again and maybe get him to write to the neuro. I have been discharged from the NHS so have resorted to private treatment.

Wb… my Lps have all be negative (3 in total) and so have my VEPs. There is a sign of possible demylination on MRI but not enough to be classified as “multiple” for MS.

Moyna xxx

6

As the thyroid gland isn’t nerve tissue I doubt your neuro would be the one to look into it. I wonder, does your neuro mean there are no changes to your brain/spinal chord tissue?

I’d see your GP and discuss the findings of your scan. I would hope that if a lesion on your thyroid gland would be investigated if it’s not a normal thing to ‘see’.

I do tend to forget that lesion means anything that is a change. So I must remember lesion doesn’t necessarily mean inflammation and/or demyelination of nerve tissue! This MS lark invades our thoughts so much I look track of what’s MS and what’s not!

Sorry, I’m in a ‘can’t sleep, must ramble on’ mode

7

Also, have your basic thyroid function tests been checked out? This is a very straightforward blood test to ensure its working right. It tests the amount of thyroxine being produced by the gland as well as the amount of thyroid stimulating hormone. These tests are usually a first step if a person has a potential thyroid problem. And if the lesion on your thyroid were to be a sign of thyroid cancer, are there any other blood tests etc that would show up an urgent need for ultra sound testing? Maybe you could ask you GP.

I know it must be awful to be stuck in the land of limbo like you have been Moyna, but somehow, surely, you need to get some kind of diagnosis, even if it’s just for your peace of mind. I can’t see how you can stop asking the questions really.

Good luck

Sue

8

Hi thanks folks,

I have hashimotos hypothyroidism and am on thyroxine tablets and I get my thyroid tested every 6 months now. I am well aware that thyroid lesions are not neuro related but my neuro should have passed me on the someone else who does know about this stuff - rather that just ignore it. Basically if I hadn’t called in to get the report myself the whole thing would have gone unnoticed. I went to my GP and told him about this and said not to worry of neuro didn’t think it was anything to worry about. I also asked about the fact that Myelopathy (lesions on spinal cord) can be associated with Hashimoto’s disease but was told it was very rare and I was clutching at straws. I am so frustrated as I think whatever I have must be rare as they haven’t found a name for it in 5

Myelopathy associated with Hashimoto’s disease is treatable with steriods and plasma exchange and I first heard of it on the Barts Blog after someone was diagnosed with it after being initially suspected as having MS. I ju st need to persuade the doctors to test me for it, but as you all know the doctors hate us diagnosing ourselves! To be honest since I have been left on shelf for 5 years with no diagnosis I cant help myself googling and coming up with theories of my own !

Moyna xxx

9

I dont blame you for feel so frustrated. The doctors never look outside of the box.

I had to go to see a private doctor in london as I was suffering from two things, my neuro told me that. Something was clouding the issues with my diagnosis of MS. He said i have all the symptoms of MS, but then there is something else which is upsetting the puzzle.

I paid 4,000 for loads of tests to be done at breakspeare clinic they are specialists in Lymes. My bloods went to the states. When they came back they said although I didnt have every titer for Lymes, I had certainly MET IT, and was showing a co infection still which although not active should not still have been there, which was a puzzle for them lol…so basically i had 3 markers for Lymes but in England you need 5 i think for diagnosis. I also had a marker for Epstein Barr virus which although not currently active was showing 95, it should have been -5… and there were 2 other viruses i cant spell. Also i had aspiragilliosis showing in my blood jeez anything else and low B12. When i mentioned that to my GP she said well its on normal range for NHS. So privately they seem to worry more about us then NHS. LOL.

Dr Munro at the clinic said it was no wonder why i was feeling so ill. She diagnosed me with all my private MRI scans and a full neuro test which took 30 minutes as having MS and a coinfection of Lymes. She wrote to my neuro, and she wrote to my GP, who actually agreed for me to start on amoxicillin for the lymes. How ever i had a bad herxing reaction and had to stop, i still have the lymes and it still kicks my butt especially if i have to take antibiotics for my constant UTI. After receiving the letter from this doctor my neuro did a full review and one more test and gave me a diagnosis of MS its now on my notes. I also have now too a new one called transient epileptic amnesia. So i went from nothing to 3 major diseases lol… just because i had TO FIGHT for a diagnosis. THREE lol. the amnesia started 2 months after my big relapse with MS.

The thing is too, in uk the NHS only do the basic lymes test. If you have had it chronic which I had, it is hard to see in any of the blood tests. They will nearly all come back negative unless its an infection from that moment.

You have to fight for this Moyna, it sounds to me like that is what you have and it needs to be seen. I think its terrible they dont share this information.

I found on one of my MRI, it showed that my bone marrow was working too hard … i mean wow no one thought to check that out, why ? was it working too hard…I believe it means i have a bad infection or even worse going on but no one bothered to tell me.

It makes you wonder how much else they dont tell you. I bought my medical notes for 50.00, and was shocked at the things they hadnt told me. I even found i had a dodgy 2 stage vault smear, no one told me about that either, and lots of other things, all of which coincidentally fitted with my lymes infection…but no one bothered to join the dots together.

I know we get our treatment free but unless its all straight forward you have had it basically. Sorry for rant, but i went yesterday to my GP as i feel so ill now for 3 weeks, on fire, funny temperatures, burning, pain etc and she just said its your MS i will make an appointment for you to have a follow up with your neuro. That was it, no checking my chest, heart nothing. I know my illness and I feel rotten all day everyday for 3 weeks. MS. Nothing else, cant possibly be anything else.

10

Oh Golden girl you have been through the mill too. I had hodgkins lymphoma in 1990 and had radiation treatment for that. One of the neuros I have seen (privately) has said that the lesion on my spinal cord is a result of degeneration caused by the radiation treatment I had 25 years ago. The NHS neuro removed that diagnosis from my notes saying that it was not true and MS / CIS is more likely but couldnt diagnose me as not enough MRI evidence for MS and clear LP and clear evoked potential tests!.

I dont think that lymes had ever been tested for. Do you sometimes doubt the MS diagnosis ? Have you had a LP ? Some neuros think that you must have a positive LP for MS and they think that a MS diagnosis with a negative LP is a misdiagnosis. Until they find a definitive test MS there will be misdiagnosises.

Moyna