Good news and bad news today - saw GP and he said my MRI was clear, so MS is very unlikely, which is good news. However, when I asked what he could do now to try and find out what it was (or help me) he said there was nothing they could do. I just feel absolutely shattered and ill and have loads of weird symptoms and I want to know what’s wrong. I know I’m being a bit cheeky posting here now I’ve been told it’s probably not MS, but I know people here are experienced with the limbo dance and are more than qualified to help! What can I do next? I do have another appointment with the neurologist, but not until April - I’m really not sure I (or work, as lovely as they are being) can wait that long. Step number 1 is have a cry and a nap; what’s step 2?!
Hi Dagny - that is good news indeed that MS is unlikely. You can, however, take neuropathic painkillers to help your symptoms and your GP can prescribe these. I’m not sure what your symptoms are but have you tried gabapentin or ampitripine at all? You should ask for treatment because it can help. Have you read the www.neurosymptoms.org website? See if you fit any of the descriptions there.
Have you had any other tests? It’s good you’re going to go back to the neurologist. A clear scan doesn’t give 100% guarantee that it isn’t MS so if you feel things getting worse you should speak up. You also don’t need to leave here! You have unexplained neurological symptoms which is what all limbolanders have really. I’ve been on here a year now without diagnosis but am very much neurologically challenged!! I don’t fit anywhere at the moment; I’m not fitting any known box - not MS, not functional, not anything but suffering in MS style nonetheless. So, stick around if you find it helpful.
In exactly the same boat as you, had a clear MRI and been told that no longer looking to diagnose me but rather treat all my symptoms ( which are ever growing). I am taking Amitriptyline and Tramadol daily and coping ok most of the time. I have regular meetings with my GP to update her on new symptoms and check my meds but that is all. the last neurologist I saw advised that until something shows on a scan I will remain in limbo. I am back at work full time and although it is bloody hard im doing it. Dont get down hearted about no Dx, just make a note of your symptoms amd keep in contact with your GP
It’s such a cop out for neuros to say that a clear MRI means there’s nothing else they can do. If you have clinical symptoms and signs so that there is no doubt that there is something organic going on, then there are other things they can test for, e.g. genetic conditions, metabolic conditions, neuromuscular conditions, etc.
Making this happen is not as straightforward as it should be mind you
Ultimately, time will tell, but waiting is hell of a hard
Your post reminded me of this: an extract from Wong et al (2008), Myelopathy but normal MRI: where next? This is their list of conditions that can cause spinal cord damage that can be invisible on MRI:
Neuromyelitis optica (if scanned after recovery from acute attack of tranverse myelitis—that is, after resolution of spinal cord changes)
Metabolic and nutritional:
Chronic liver disease
Chronic renal disease
Vitamin E deficiency
Spinal arteriovenous malformation /fistula
Spinal cord infarct
Viral myelitis, including
Zoster, Ebstein-Barr, herpes simplex, cytomegalovirus, adenovirus, enterovirus, coxsackie B virus, herpes virus 6
HTLV-I or II
Fungal infections, including:
Post infectious autoimmune:
Acute transverse myelitis
Radiation induced (acute and chronic myelopathy)
Systemic lupus erythematosus
Stiff person syndrome
Intravascular B cell lymphoma
Motor neuron diseases:
Amyotrophic lateral sclerosis
Primary lateral sclerosis
Manifesting carrier X-linked adrenoleukodystrophy
Hereditary spastic paraplegia
Neurodegeneration with brain iron accumulation
Structural lesions outwith the spinal cord:
Dopa responsive dystonia
As you can see, MRI is not a perfect diagnostic tool: there are many conditions that cannot be detected on MRI.
Hi everyone! I
ve been reading a number of posts on the subject of "limboland", and at least I feel I can identify with the fear and frustration of having MS symptoms but no diagnosis due to absence of lesions showing on MRIs. I also have a number of symptoms, but was beginning to feel a lot better, and thought it must just have been a virus or something. Then I received a letter which my neurology consultant had sent to my GP, indicating there was a possibility of some inflammation of the brain having been detected on a recent MRI scan. Of course we looked this up on the web, and read that inflammation of the brain is central to the diagnosis of MS. Now Im unsettled and anxious, and not due to see the neurologist until April. Has anyone else had a similar experience, or been diagnosed with inflammation of the brain?
Hi elizabeth i have been doing exactly the same and reading almost all of the posts just to see if there are other people out there the same. I have hardly had any symptons, just some numbness and pins and needles, went for an mri scan in october. I thought it would come back clear but the results came back like you that i have “evidence of inflamation on thd brain and spinal cord” i have a follow up appointment at the end of jan to talk through what this might mean. I have had all sorts of emotions and finding it quite difficult to be in limbo. Reading alot of stories though it sounds like everyone is the same. What were your first symptons? And how are you feeling? Lainey x
Thanks for the replies - especially Karen’s long list of possible alternatives. Not going to look into them and get myself paranoid, but it’s nice to know that just because nothing showed up on the MRI it doesn’t mean there’s nothing wrong. Does anyone know if swollen joints is a symptom of any of those possibilities? I have one really swollen and sore joint, and was told there was no way it could be connected, but I’m wondering if they’ve got that wrong and it could be another ‘clue’. I’ve also wondered if the fatigue could be causing the pins and needles/burning sensations - it’s possible, right?
Deb, I have considered the possibility of functional neurological disorder - in fact I thought it was entirely possible. I did demonstrate Babinski’s reflex and a couple of other abnomalities in the clinical exam - would that fit with functional neurological disorder?
I am on pregabalin as well, so at least I haven’t been left completely in the lurch. Just want to stop feeling so ill - I was so tired today I was going to get something from downstairs and ended up lying down on my landing and having a nap (I couldn’t even face making it the 10 steps or so into bed).
Some of those conditions listed by Karen can indeed be linked to swollen joints - Sjogren’s syndrome for example is often secondary to rheumatoid arthritis (as in the case of my lovely uncle) or can be secondary to lupus. It really does depend on your range of symptoms though. Have you had blood test to look at you ESR, C-Reactive Protein levels and for Rheumatoid factor? I am currently in limbo land too suffering from numerous symptoms but my GP has decided to go down the rheumatology route 1st due to family history and to test me for thyroid problems, diabetes and B12 deficiency. I wish you luck finding an answer to your problems.
well that was reassuring! lol xxx
I would say positive Babinski’s is never a normal sign and doesn’t fit with functional. You need to keep pressing on for an answer - could you ask for a 2nd opinion? If you’re on drugs already and they do nothing for you it might be worth trying something else but in the main you need to be patient and sit out the recovery which can be slow and long!
If you’re not referred for a 2nd opinion you will need to wait for time to tell as Karen says - time will make a change to the MRI as well if it is MS. So in a year’s time for example, if you have MS and another MRI something will show.
Stick around here - it’s the best form of help I’ve had certainly.
Thanks for the responses, I’m feeling a bit more positive today at least
The pregabalin is helping somewhat - I really only get burning pain/pins and needles when I’m due for my next dose at the moment (which is a good way to make sure I remember to take them!) Unfortunately I don’t have anything to help the fatigue or the vertigo, and neither my GP nor my neurologist seemed that interested in giving me anything to help.
I’m seeing another GP next week about my swollen joint - I’m hoping he will be able to decide whether the symptoms could be related or not, and if there’s even an off-chance that they might, arrange for more blood test. I’ve had lots of blood tests, but I don’t think they were really looking for anything rheumatological (though I might be wrong). I know that I had a full blood count and they checked for vitamin deficiences (including D and B12), anaemia, platelet count and probably other things I’ve forgotten about. At the very least I hope that he’ll be a bit less dismissive and maybe even a bit sympathetic - that’s all I ask.
I am trying to be patient, it’s just been a particularly bad week and I reached the end of my tether yesterday.