MRI scan tomorrow due to GED. at private hospital due to 7 months waiting list. Neurololgy or Ophthalmology docs have discussed.

[nezzykins]

Hi to you all. I have previously posted that I have decided to pay for total head scan that has been advised my Ophthalmology dept in NHS hospital. After calling the scan dept, they could not find my referral letter from NHS ophthalmology dept, but then they realized that the referral had gone to the neurology side for assessment. So......at present, I don't know who will be reading the scan reslults. Can anyone tell me what neuro's will be looking for in relation to Opthamology? Since my last post, my tongue has skinned or shed itself twice, and is very red, swollen and sore. Before it shed its lining, there appeared to be something like a map of GB on it!!!!!! My hand tremors are getting worse and leg weakness and 10/10 anxiety/ tearfullness at the stroke of a hat, are still with me. After my physical/mental melt down at beginning of January following 5/6 weeks on quetiapine ( due to another diagnosis of Ciclathaemia from a psychiatrist), I have been left with hand tremors ++++ 18LB weight loss, high pitched noises in my ears, and eyes feel as if they are turning full circle in my head ( although its only the feeling and not that they really are. Can anyone enlighten me as to what Neuro's are checking out???? many thanks as always guys for your input/suggestions/advice on this wonderful website. x

[Fruitandnutcase]

Afraid I can't help with any of your questions but I really hope your scan goes well tomorrow, good idea to pay to go private you couldn't wait all that time feeling as bad as you do. Are you being treated for your Graves at the moment?

[nezzykins in reply to Fruitandnutcase]

Hi fruit and nut case. Yes, I was diagnosed with Graves about 6 yrs ago. discharged from endo following RAI due to agranularcytosis from Carbimazole. My own GP has been " managing my case "since and misread my thyroid profiles. was being over replaced and went hyper" I have never had a T3 done since. Endo does not work with T3, so i dont know whether my T4 is converting properly. its only since joining this website that I became a little confused as to why they in South Wales( GPS and endo's are all ignoring any free T3 involvement and its conversion to T4!!! It all just seems like a total mess and now an added diagnosis of Ciclathemia due to mood swings ( which I feel is all down to the Graves). Thank you for your interest. I have posted many things on here if you are interested in the bigger picture of whats happening now

[Fruitandnutcase in reply to nezzykins]

Oh dear, 'misread your thyroid profiles'! You just couldn't make that up could you. I've never had my T3 checked either even though it has been put down most of my blood test request forms. I hope you get your eyes and your other problems sorted out soon, your tongue sounds SO painful, I know what it feels like when I get a cold sore on the roof of my mouth, so your poor tongue must be agony. Will look back at your posts

[nezzykins in reply to Fruitandnutcase]

thanks. I'm wondering about pernicious anaemia TBH as the tongue does this with one of its signs and symptoms.I have been reassured once again by my GP that I do NOT have this autoimmune disease. I am finding that I do not trust doctors anymore and it could be a case of " humoring" me yet again and again. There is also a white shape on my tongue that looks like a raised map. It gets coated and then it sheds its skin and the map comes back? Maybe I am turning into an alien, or worse still, maybe I have always been one lol x

[Fruitandnutcase in reply to nezzykins]

Have you spoken to your dentist about it. They can refer you to hospital too and it might be something they have seen before or know of?

[nezzykins in reply to Fruitandnutcase]

Im due for dental check soon. I will deffo ask him for his advice. Thanks x

[Fruitandnutcase in reply to nezzykins]

Think it would be worth it, I always think dentists take mouth health very seriously. x

[shambles]

Bless, you sound so much like I did a few years ago before I started to get some proper treatment. It's desperately hard the whole process.

What can I tell you? I have had 4 MRI's relating to Grave's eye disease. It is simply to see the 'fatty deposits' in and around your eyes.

It is all so scary and exceptionally scary when your eyes are involved but this test is a normal first line test to check how much, if at all your eyes are being affected/attacked. Might be not at all. If there was any front line worry about your sight, they would have sent you for a CT scan first, this being necessary for surgery preparation.

As for the test itself. It takes about 20-30 mins. They put a cannula in your arm, ask what music you would to listen to, tell you its going to be very loud, which its not really then after about 15 mins they come put some dye I think it is in your arm and then not long after that it's done. For me, it has always taken 3 weeks to get the results and I have had sight threatening problems.

Have a read of this:-

rnib.org.uk/eyehealth/eyeco...

and there is a small closed facebook group for us TED's (although beware that it is mostly people who need surgery)

facebook.com/groups/3129984...

I hope it goes well for you tomorrow and I can tell you it does get better :0)

[nezzykins in reply to shambles]

Thank you Shambles. they did want to do a CT scan initially on the first consultation, but then decided to do a full head MRI It went well and I was able to tollerate the noise and the keeping totally still bit. my next appt with ophthamologist is tomorrow. The private MRI radiologist told me that he would do his best to report on the MRI, and transfer results to NHS appt by 11.30 for me. How nice they were to me. almost felt alien to my past experiences!!! x

[silverfox7]

Yes hope it goes well

[nezzykins in reply to silverfox7]

T Y silver fox x

[oldgreybird]

Good luck with trying to get things sorted out and I hope you start feeling better soon. It sounds awful. I know from experience that if thyroid meds are not appropriate or at the wrong level then it can have horrendous repercussions.

However, don't worry about neurology getting involved. It's probably so they can dismiss the possibility that your symptoms could be due to Multiple Sclerosis. Eyesight problems, tremors and leg weakness and balance problems can be signs of multiple sclerosis and the MRI will help to clarify if there needs to be further investigation into this or not.

It was only when the neurology department got to see me that my symptoms were looked at as a whole instead of what had happened in the previous 2 years when different departments did their own thing and never joined the dots!

[nezzykins in reply to oldgreybird]

Thanks for your reply Oldgreybird. My MRI scan was ok with minimal damage to my eyes....fatty deposits.Since joining the forum, I realized how very little I knew about thyroid problems, the involvement of vitamins and minerals AND no one told me to to take my thyroxin on empty stomach and waiting 30 mins before eating! I only found this out from the forum. I used to take it with lanzoprazole, estrogen and sustained dihydrocodeine due to fibromyalgia pain control! I now take my thyroxin at 7am on its own. How come these doctors were even unable to give me this advice EVER.My last endo told me that he wanted to see my TSH as low as 0. It is now .7, so i wonder why this has been ignored since the letter was sent to my GPs! No doctor has checked my T3 for years. Im wondering why? Hope you are able to give me your take on all of this. I have really bad hand tremours with anxiety....very similar to the first time I was diagnosed hyper 6 yrs ago. Lynne x