Forum

Just joined not dx yet

Hello everyone, have been reading some of the messages on here and finding them really helpful.

I am seeing neuro on Saturday, at last! been on waiting list 5 months as they had a backlog!

Reading through the list of symptoms I can tick pretty much all of them, tired and fed up of not knowing what is going on, think I read a few people saying they just want some answers even if they aren’t the ones we want.

Got a fibro dx last year but am not convinced, don’t tick alot of those symptoms by Rheumatologst was bit of an a**e and I think he had decided on diagnosis before got in to the room!

Bit nervous about Saturday, am seeing a consultant that seems really prominent in the MS world so I am hoping he refers for MRI etc. without me having to insist.

Wishing you all the best day you can have today x

hi gypsy,

welcome to our band of merry men and women.

good luck for saturday

carole x

Hello and welcome. I hope you’re gonna fight your corner, as many on here have had to do, and find out what is going on. It sometimes takes ages, and sometimes it doesn’t . Mine took ages, and I’m still not sure what ‘type’ of MS it is, I have to wait till November :s keep strong and keep us postedxx

Hello and welcome Gypsy Just wanted to wish you good luck for Saturday. Do please let us know how you get on. Janet x

Hi Gypsy, welcome! Oh…today is Saturday. How did it go? With your fibro diagnosis, did you have an MRI? Wishing you clarity :heart:

hi there, and please may i add to the welcomes. this is a great place to chat to other people, and everyone is friendly and supportive. hope all went well today, and would love to know. best wishes, fluffyollie

Hello and thank you for the warm welcome and encouragement.

So didn’t see the consultant I expected to see, they had shipped a different one in to help deal with the backlog.

He was very thorough but didn’t give any clues as to what he was finding and I didn’t think to ask!

I have been referred for a Spinal MRI and to Addenbrookes in Cambridge for nerve functioning tests. He said he would prefer to do brain and spine scan together but hospital don’t allow that. If nothing shows on spine one will then be sent for head one after.

I discovered that I can’t hop on right leg and that on that side there are areas of reduced sensation with the pin pricks. Other than that I don’t know what he saw. I am assuming he picked up something in order to send me for further tests!

Feel relieved he referred me without a fight, a little apprehensive about what the tests show but mostly just glad I am having them at last!

x

Hi reikiblossom

No I didn’t have an MRI when I was dx with Fibro. Had bloods done at Drs then ref to Rheumatogist. He didn’t ask about things in general, literally just asked specific “fibro” questions, did the sore spot test, dx me and sent me on my way with advice to “exercise like an olympic athlete” and take amytriptline!

When I asked about my weakness on my right leg and that if I move in wrong direction falling over he replied " well walk in the right direction then like you are supposed to!!"

Helpful lol x

Hey, well that’s good, you’re on the journey at least. I think it’s a lot better to be on your way to knowing that not at all. Well done for getting through it. The first one is quite nervy as it’s a bit stressful making sure you don’t forget things etc. you did it :slight_smile: so now, get your tests done and see what happens. Keep us posted along the way xx

I’m glad you have a way forward, Gypsy. Odd that your hospital don’t do brain and spine scans together - I had mine done together at Peterborough City Hospital. It could be that they use different strengths of MRI. Apparently the lower powered T1.5 is better for getting pictures of the spine. Also, doing both together takes the best part of an hour! I don’t know how I got through it and was glad I know some visualisation meditation techniques! You had me doing your ‘hop test’ :wink: I can, just, but not very spritely on my left (most affected) leg. Here’s hoping you don’t have to wait too long for your test appointments. All the best :slight_smile:

Thanks for your replies. I have got a date through for the MRI on11th Sept so not too long to wait at all.

Also got a copy of the letter from Neuro today, can’t say I understand it all but basicaly he is saying that if thoracic and cervical scan is clear they will do head scan, conduction studies and blood tests potassium channel antibodies. If scan shows inflammation he may do a lumbar puncture.

Apparently reflexes etc were fine but showed “pyramidal weakness of right leg on the couch at 4+”. no idea what that means really despite googling it ! I think he is just saying I am not imaging the weakness lol

so he is being really thorough, have tried googling what he said and realistically I am not going to get any “clues” as to what he is thinking so I have stepped away from the search engines as it just really doesn’t help!

xxx

The best place to go for help in understand your neuro’s letter is your GP. He is medically trained and should be able to translate the medical-speak into plain English. I agree with you, the “pyramidal weakness” bit shows he found evidence of weakness, you are not making it up, he could see something for himself.

It sounds like things are moving slowly and your MRI is only 3 weeks away - that’s not long, really. Keep us posted on how you get on.

Hi Gypsy, I was going to suggest seeing your GP to translate all the jargon, I’ve asked mine on various occasions!

Not to much longer to wait for the MRI, good luck.

Rosina x

thanks thats a good idea! I hadn’t thought about doing that :slight_smile:

Not too long to MRI etc, I am just really relieved that things are happening now and that the Consultant took me seriously and I will get some decent tests done now

Wishing you the best today can be xx

Hi Gypsy,

good luck with the MRI. Do keep us up to date.

Janet

x