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One Foot in Limboland

Although I have received a diagnosis, I still cannot shake the feeling that it might really be MS. I would appreciate your thoughts. My story in a nutshell: my adult working life has been interrupted by periods of sudden illness and fatigue. In 2008 I gave birth to my daughter - a wonderful pregnancy, it even relieved back pain, but the birth was difficult. My uterus just wasn’t contracting properly and after an emergency c-section, I needed a life-saving hysterectomy because that motherly muscle wasn’t contracting as it should. Aug 2012 I began to get heat intolerance, fatigue, started having trouble with getting words out, tripping over, dropping things, terrible memory. Nov 2013 finally saw a neurologist who dismissed the GP’s suggestion of ME, suspected Functional Neurological Disorder and sent me for an MRI. Full head, cervical and thoracic MRI on a less powerful T 1.5. Results came back ‘within normal limits’. Neuro had basically said LP wouldn’t be helpful. Diagnosis finalised as FND with Chronic Fatigue Syndrome. I’m still waiting on treatment via a Chronuc Fatigue services group therapy course. I remain unconvinced that it isn’t MS, despite my GP saying that with my symptoms, something would have shown on the MRI. I’m seeing my GP again very soon as since March I have developed gait changes (my now 5 year old says I waddle like a duck). I get episodes of ‘the morning stares’…often whilst waiting to cross roads. According to the website the neuro gave me to look at (www.neurosymptoms.org) it might be derealization. I’m also now getting involuntary movements (myoclonus?) sharp sudden head movements, my arm(s) will fly up, knees buckle for a second, hip jerks forward, shoulders shrug. I feel so wobbly I got myself a stick. I get facial nerve pain, in my tongue too; have trouble understanding what people say sometimes, mix words and sounds, have tinnitus…just too much going on and in a relapsing/remitting pattern. Waves of symptoms come on and never completely go away. If I bring up MS again to my GP, I’m worried he’ll think me overanxious. My main point will be my altered mobility and involuntary jerks. Thanks for reading all this!

Aw what a pain in the backside! Persevere Hun, they will get to the bottom of it, whatever it is. I think that’s he worst bit, the not knowing! You know we are all here for you whatever the outcome and I hope someone who is more informed than me will reply soon. Take care xxx

Thanks, Beverly. These ‘diagnoses of exclusion’ (FND, ME/CFS etc) don’t feel like a real diagnosis at all. The CFS treatment is only because nothing exists for FND specifically. Don’t get me wrong, I don’t want medication, not even just paracetamol, but would take it if it would help. My next GP appointment can’t come soon enough…but to see the one I trust, and for continuity’s sake, I need to wait a bit longer.

Yes I’m the same, I will wait to see my GP as he knows me and my health history. There’s no way a locus can look at my notes in the few mins between patients and ‘get it’. So I know what you mean there. I’m always here hunni. One day you will get the answers you want, just in time. Big hugs To you xxxx

I’m counting the days to my GP appointment - one week tomorrow. The odd numb but not entirely numb feeling has spread. It was in my right toe, my left foot to the knee and on my left cheek and the tip of my tongue. Now, it feels like I’m wearing an odd pair of tights, with the left leg, all the way to the hip, being a thick fabric and the right, a fine fabric. Even my bottom isn’t as sensitive anymore!! I don’t really want to admit it but my left arm and hand are feeling a little less sensitive also.The tingly tongue has spread back farther, too. Surely, something would show up on an MRI now?! I’m quietly anxious…

My GP was helpful and attentive. I’ve been referred to a neurologist again (a different one for a second opinion) and he apologised to me for not being able to help me further, himself. So, I’m firmly back in Limboland again but very relieved to have another opportunity to discuss things with a neuro. I bumped into a friend this morning. She has RRMS, diagnosed a year ago but with years of issues before that. Admittedly not all of our symptoms match but we still have a lot in common. It’s good to chat face to face with someone who understands. I’m also very grateful for this forum. Honestly, it has been like a friendly, familiar waiting room! There’s been so much waiting…but for now, the summer holidays are coming up and I have some lovely family daytrips to look forward to! May you have a lovely (cool!) summer too :heart:

Hi Reikiblossom

Just wanted to say I hope your new neuro referral comes through soon. It sounds as though you have a good, supportive GP - they’re worth their weight in gold aren’t they?!

I hope you get some answers soon xxx

Hi Pandagal, thanks. Yes, I’m lucky to have tbat GP. I had to wait weeks for that appointment and once there, had to wait nearly an hour over my due time but it was worth it to be listened to and treated so well.

hey reiki, i’ve just had FND today. bit of a kick in the face and frustrating.

Finally got back on the forum! Anyone else had trouble? My latest news: I’ve ordered myself a wheelchair. I’m still waiting for CFS, Neuro and now Physio appointments, but having used one in a big shop and today on a day out to a tourist spot, I’ve found it so helpful, reducing fatigue, dizziness and the anxiety of falling over! I’m looking forward to my new wheels arriving :slight_smile:

Yay! I have a physiotherapy appointment for next week :slight_smile: I will be taking my stick to get it checked but I wonder if I ought to take my new wheelchair, too, or just mention that I have one for when I need it? I’m glad that came through quickly.

Excellent news. Can you give the physio a call and ask if they want you to bring your wheelchair? They may prefer to have a separate session for that, but it’s one of those things: if you don’t ask you’re likely to guess wrong which way they’ll want to play it - it’s Murphy’s Law!

I think I’ll just mention it and make sure I get a pit-stop rest at my parents. I need practice on pavements!

Rather than starting a new thread, it felt best to continue on this one. Well, the second neuro showed me my old MRI (that had been taken before the onset of vision disturbance and involuntary movements) and told me I had a ‘pristine’ brain, offered me Duloxetine (not after reading about it, but thanks anyway), sent me for a VEP test - clear. Oh…that neuro has left, the reply came from another. My GP had not received the report.

So, I did a ten week CFS/ME course (very helpful, now I have some tools to manage the fatigue and a lovely new group of local-ish friends), bought a mobility scooter to help do the school run after having tried once with the wheelchair and seeing ‘good’ pavements in a whole new light.

I’ve tried to accept my FND diagnosis. I even took part in a research project at Addenbrooke’s because more FND research desperately needs to be done. Then the radiologist found ‘a couple of structural things’ on my fMRI. So I waited to see my good GP, he’s agreed to try and get the fMRI records available and refer me back to neurology.

My daughter recently commented on how I was meandering all over the path when I was trying to just walk in the middle. My dystonia, as my OT called it, has reduced but not gone away (my brother said “Vidal Sassoon!” after I suddenly did a head jerk to one side, which swooshed my hair around!)…the dizziness and tinnitus is still with me, the cog-fog and bowel & bladder issues still there. Some days it is all low-level, enough to almost ignore. Others, everything plays up. Still, I’ve joined a gym through being referred by my OT and have made some progress but think I’ve hit a bit of a plateau.Finally, my dear hubby is having health problems now and I’m trying not to worry about him, though I did burst into tears in front of my doctor (honestly, I’m not depressed!).

The problem with getting an FND diagnosis has been that the neuro’s discharge you back to your GP, who can do little to help. Some FND patients that I know of have ended up with an MS diagnosis after all. So, I’m being tenacious. It still might not be MS…but I have not as yet been given a satisfactory explanation of the diagnosis they’ve lumbered me with. Hopefully, this time, I’ll get the clarity that I’ve been yearning for.

Hi Reikki,

I am sorry about your troubles and frustrations. I too am in Limbo and never really expect to get answers.

Did you actually have a LP ? and was it negative too. If you didnt then I would ask for one.

If it was negative and your MRIs were clear then it really cant be MS.

FND seems to be a dx you get when they just dont know!

Moyna xxx

Hi Moyna, I did ask about getting an LP with both neuros and both said that there was no point. They didn’t want to do it without evidence on an MRI. I joke that FND stands for Found No Diagnosis…but some strongly argue that it is a condition in and of itself. I do actually tend to agree…they just haven’t satisfactorily ruled out MS for me.

Hi Reikki,

Rarely some people can have MS with a negative mri but their ms must be very mild if there has not been much damage done. your symptoms ae quite pronounced so if it was MS it would show up on MRI. That is my guessing anyway. People do recover from FND after a while I think dont they?

Moyna xxx

We are told that it is possible to recover from FND but on a group of 2000+ FNDers, I’ve only once heard of someone recovering. Mostly, it seems very relapsing/remitting and in many cases, seems to progress.We need more research. You think my symptoms are pronounved? I have quite a few but none (aside from the fatigue) are all that drastic by themselves. Even the involuntary movements are few and far between, especially now. I just want them to check again. If still unremarkable, then I’ll try to forget about MS. Its hard though, knowing family and friends who have been diagnosed with MS and sharing symptoms. We’ll see what the third neuro says…

I’d swap my lesion loaded brain for your pristine one Reikiblossom. Honesty, your normal MRI can only be good news.

It isn’t pristine though, humbug. The last scan I had found structural changes but as it was done as part of a research project, it doesn’t ‘count’ towards my diagnosis. That is why I’m due to see a neurologist again. My brain certainly isn’t working properly in several areas. They just haven’t found out why yet.