Hello..I'm back in limbo land : s

Hello everyone. I thought I’d let you know what’s been happening. I saw my Neuro on Monday. I was told by my Crohns specialist that I don’t have MS. My GP tells me I have MS. Now the Neuro has seen my MRI and because I have several lesions in my brain he wants to have a definate MS diagnosis before putting me on treatment. I’m still on Humira withdrawal for 4 months now, instead of three. This is to rule out the Humira being responsible. In the meantime all he can do is treat the symptoms separately. I’m due to see ENT for my buzzing ears. I’ve got Orthotics next week to help my left leg and a wheelchair fitting next month. The Neuro said he can’t say a definate yes or no to MS as it’s still a possibility. It may also be the case that I never get a diagnosis. I’m also going to see continence nurses for catheter fitting. So, I’m back for a while I think in limbo land. It’s quite frustrating as only the other week I was rejoicing that I don’t have MS and now I’m back to square one.

anyone else been here? It’s getting boring I tell you. One week they tell me one thing, the next week another. Ah well. In the meantime I’ve been getting on with things best I can, my son has gone to Uni ( sounds like one big party to me to be honest!) and lots of things being changed in the garden, so been quite busy.

So that’s me. Hope everyone is well. I’ve also had a hard time being able to log in to my account for the last 2 weeks. Not sure what’s going on there. X

Specialism bingo is not a fun game to play, and it is very bad luck that you find yourself playing it. It seems to me that, when two big beast consultants, both masters of all they survey in their own specialism, and inclined to ignore the very existence of other (lesser!) specialisms, lock horns over what is the matter with a patient who has fallen into the clutches of them both, it can get a bit messy! I hope that they slug it out without causing you too much extra stress, and that you get some clarity soon.


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That sounds like an absolute nitemare Beverly. Going backwards and forwards multiple times a week. I had to do that once when they were trying to figure out why I have high blood pressure at 21. They gave up on me and just put it down to hypertension.

Im still awaiting a diagnosis too but the strange thing with me is Im getting so many symptoms that they dont point at one direct thing. Its turning into almost as much as a disaster as yours sounds like! xx


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Thanks Alison. I don’t think anyone could’ve put that more eloquently …you hit the nail on the head xx

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Oh yes, it’s become a bit of a joke in our household now. I’ve got a good mind to start a sweepstake and place bets on what they’ll come out with next ! So I’m back in the waiting game. I’m back in January to see Neuro and in between then I’ve got ANOTHER MRI. Boring! How many times do they want to see my brain? It cannot be that interesting that they want to see it over and over. This will be my 4 or 5th MRI now. I got a copy of my last one, I’m no expert but it looks like any other brain to me. Honestly, they crack me up. MRI scans cost a lot of money and I feel like a bit of a guinea pig to be honest. Well, I’m sure eventually they will figure it out. Thanks xxxx

LOL @ your reply! When I went for my MRI scan my family were joking on saying they wouldn’t find anything in my head! Im supposed to be seeing a neurologist for the first time in november but my doctor (bless him) has requested for me to pushed forward in the case of any cancellations. At least things are moving I suppose!

Yay for us guinea pigs! :slight_smile:

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That’s how it feels though doesn’t it? Guinea pigs! I hope you get sorted soon and no more messing about. It’s alright for them. To um and ah but it’s not them living with it, it’s us. In the meantime I’m getting on with things best I can. Always here if you want a natter xx

Hi Beverly,

Be prepared for the long haul. I still dont know what is the matter with me. Roll back to 1991 ! I had dreadful l’hermittes. Saw a neuro and had an MRI, LP and Evoked potential tests. All were OK and I was told it was a side effect of the radiation treatment I just had for lymphoma. It passed and I was fine until 2005 when mt left arm went numb. Back to neuro I went and had another MRI. It was clear again, arm returned to normal and I was sent packing. Then in 2008 I had a sort of attack. Numbness, l’hermittes weakness etc. GP thought all these neuro problems were in my head as I had panicked about them before and scans were clear all the time. I was given medication for anxiety and problems cleared up after about 8 weeks. A year later though the problems really started with the slow development of foot drop on right leg. GP didnt believe me so it was not until 2011 when I saw neuro again. This time a problem was seen on the cervical spinal cord. He said that back in 1991 I must have had damage to spinal cord causing it to age/deteriorate more quickly than normal. There was nothing they could really do except help with symptoms.

Then in 2012 I saw a new neuro who said no to radiation myelopathy and yes to MS. Yet he couldnt formally diagnose it because I didnt have enough lesions and a positive LP. He left my with the dx of transverse myelitis.

So all in all symptoms started in 1991. I have had 7 full body MRIs, 2 negative lumbar punctures and normal VEPs. 23 years have passed and I am still in limbo!


Moyna xxx

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Thanks Moyan, I’m sorry to hear you’ve had all that messing about, but I’m also glad I’m not the only one! I’m not going to stress out about it anymore, I gave that up the other week when I thought ’ right, this is gonna take some time’. It may be I never get an answer but my Neuro said he’s not giving up on me as there are lesions that shouldn’t be there. He said he will treat my symptoms individually for now. He’s been great really. He doesn’t believe I have fibromyalgia which is what my Crohns specialist keeps banging on about, he believes it’s a Neuro problem due to evidence and symptoms so all I can do is wait and deal with the probs as I go.

im hoping I don’t have to wait over 20 years! That’s ridiculous! But if it happens it happens : s

thanks again and we will hang about here for a while then :slight_smile: xx