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Just don't know what to do now

Sorry feel like a bit of a moan. At the end of my tether now. Since my wierd “attack” last week symptoms are worse. I wnet back to work today, I barely manahed to stay upright so tried to avoid moving around too much and only spoke when I had to as my speech was slurred. Walking home I had real difficulty making my legs move and walking in a straight line and diced with death crossing the busy road as my vision was so blurred I couldn’t see the cars until they were pratically on top of me. I desperately don’t want to take any more time off work but i also know in my heart of hearts that I just can’t do my job properly at the moment. Now i’m home i#s so dizzy i can barely walk and have got really bad tremors. So damn fed up with this. based on the fact my neuro still insists it’s stress i took an online stress test and snwered all the questions really honestly. My result is “low stress” which I know anyway. Stress did not trigger all this though it probably has a small part to play now because of this “limbo”. Jusy hoping that the vestibular tests i’m having on friday show something, though from what i can see, a vestibular diorder would only really explain the vertigo, not the weakness/speech and tremors. I have seen mentions on here of neuros who specialise in MS, does anyone know how to find one? I have no idea if this is MS or something else but I need an answer of some sort. Arrrggghhhhh, hate this!xxx

Not much I can say so will send you a big hug. Hate the way they put everything down to stress when it’s being in limbo that is stressful not prior to the symptoms. Really hope you get somewhere soon Axx

Hi,

It is horribly stressful, sorry you’re having a bad time.

My understanding is that once you have an official diagnosis, you automatically get transferred to an MS specialist neuro, but during the horrible limbo-land assessment process, it can be a bit ‘pot-luck’ as to which area your neuro specialises in (mine specialised in Parkinsons!). I was initially discouraged from asking to be assessed by an MS specialist, as I was told that the assessment process could take longer if I was only prepared to be seen by a particular consultant (I guess it is a bit like asking for a GP appointment, when you sometimes need to wait longer if you request a particular doctor). I was advised that unless they thought it was either ‘definite’ or ‘very probable’ that I had MS it might be quite difficult to get an appointment with the MS specialist… so it does seem that if you don’t have a specific diagnosis of MS or ‘probable’ MS, it is more difficult to ensure you get assessed by an MS specialist. Which makes me so mad! Don’t even get me started on that one!

But that does not mean you cant get seen by an MS specialist, it just means you have to be specific with the hospital that that is what you are requesting. My advice would be to ask for the name of the consultants at your hospital who specialise in MS, and then ask specifically that you be put on their lists, as opose to staying with a neuro who doesnt specialise in MS. But be prepared that this might increase the length of time you have to wait for your appointment - and maybe a bit extra waiting time might be worth it in the long run if it means that when you do get seen it is by someone who knows specialises in MS? xx

You will find the info you want about MS specialists on this MSS site. Click the ‘near me’ tab at the top of this page and then you can look for who is an MS specialist neurologist in your area.

Sorry you are having such a horrid time.

Alison

Hi there, What is the difference between CIS and MS? Based upon clinical symptoms alone, CIS and MS appear the same. However, definite MS can be diagnosed only after occurrence of a second episode of MS-like symptoms (or magnetic resonance imaging (MRI) signs) that meet specific diagnostic criteria. It is not possible to predict with certainty if an individual with CIS will develop MS. Studies show that 85% of individuals with clinically definite MS initially had CIS. How is CIS diagnosed? Diagnosis of clinically isolated syndrome (CIS) is based mainly on clinical findings, including your reports of “invisible” symptoms. Your physician must also rule out other conditions that may mimic CIS . An MRI scan is performed to look for signs of inflammation and demyelination (i.e., lesions) in the CNS. What does a CIS mean for me? For many individuals, CIS predicts a second attack of symptoms that confirms the diagnosis of MS. This possibility is difficult to come to terms with. However, experts who treat MS believe CIS presents a valuable window of opportunity – the chance to set in motion the tests and imaging studies that can rule out or confirm MS sooner rather than later. Taking action is one way to manage the anxiety of waiting for a final diagnosis. An individual’s level of risk can be suggested based on findings of an MRI scan performed at the time of the CIS. Those with no lesions detected on MRI are at low risk of developing MS; risk increases with the number of lesions detected. Trials of CIS patients with two or more lesions on brain MRI (which were not causing symptoms) found that over the following 2 to 3 years, 45% to 50% of patients had a second attack (i.e. met the clinical criteria for MS. Unfortunatley, there’s no way of knowing if or when an m.s attack will or won’t happen. Do try to get your symptoms treated and have regular eye test in the interim. When you have blood’s make sure you get regularly screened for vitamin D, as most G.p do not do this routinely and it’s linked to m.s. The rest is going to be a waiting game, very familiar thing for all of us. Normally your neuro consultant or G.p that would refer to m.s consultant, but as with all you need to meet a criteria. I wish you well

Hi, why did your doctor sign you as fit to work? It sounds like youre not well enough at all. I think I would go back to your gp and definitely get your eyes checked at the opticians. I was only referred to the ms specialist after I was diagnosed, mainly to get DMDs. Take care.

  • Thanks everyone. Daisy I always pressure my GP to let me go back to work. I get 13 weeks paid sick leave then on half pay for another 13 weeks and then have to rely on SSP. I have already had a fair amount of time off and I don’t want to use up all of my sick pay entitlement unless I desperately need to, we just wouldn’t be able to cope financially. My managers are fantastic and a lot of the time don’t officially register my sick days with HR, they just put “working from home”, bless them, that really helps. I love my job and as long as I can physically do it I want to keep working, staying at home sick makes me feel really down so doesn’t really help matters. At least my job gives me something else to focus on. Thanks Alison for the Near Me tip, hadn’t thought of that. I am due my vestibular test on Friday and in my follow up apointment I am going to really pin the neuro down to giving some answers and taking some action, These will be: (1) My MRI identifies Demyelation, why has this been ignored. (2) My blood tests showed a high positive level of anti nuclear antibodies which according to things I have read are a strong indicator of either an auto immune disease or valscular disease, why have these results been ignored and not been followed up? (3) why had he never asked about my family medical history? (4) How has he come to such a firm conclusion that this is all down to stress when he has only ever met e twice for 20 minutes at a time and has never asked about my family/work/emotional life? (5) Why is his interpretation of my braim MRI so different to 3 other doctors who have seen it, all of whom say it is not conclusive to rule out MS? (6) if he is so convinced I am just suffering from stress why has he not discharged me? (7) Can I have another MRI as the last one was 6 months ago and I have had 2 “attacks” since? (8) Can i have a lumbar puncture? I have also put in a complaint to BUPA about him, and if he is of no help in the next consultation I will be putting in a formal complaint about him to his hospital. In the mean time I shall research a different neurologist, I think that’s all I can do, just have to keep plodding on
  • Thanks everyone. Daisy I always pressure my GP to let me go back to work. I get 13 weeks paid sick leave then on half pay for another 13 weeks and then have to rely on SSP. I have already had a fair amount of time off and I don’t want to use up all of my sick pay entitlement unless I desperately need to, we just wouldn’t be able to cope financially. My managers are fantastic and a lot of the time don’t officially register my sick days with HR, they just put “working from home”, bless them, that really helps. I love my job and as long as I can physically do it I want to keep working, staying at home sick makes me feel really down so doesn’t really help matters. At least my job gives me something else to focus on. Thanks Alison for the Near Me tip, hadn’t thought of that. I am due my vestibular test on Friday and in my follow up apointment I am going to really pin the neuro down to giving some answers and taking some action, These will be: (1) My MRI identifies Demyelation, why has this been ignored. (2) My blood tests showed a high positive level of anti nuclear antibodies which according to things I have read are a strong indicator of either an auto immune disease or valscular disease, why have these results been ignored and not been followed up? (3) why had he never asked about my family medical history? (4) How has he come to such a firm conclusion that this is all down to stress when he has only ever met e twice for 20 minutes at a time and has never asked about my family/work/emotional life? (5) Why is his interpretation of my braim MRI so different to 3 other doctors who have seen it, all of whom say it is not conclusive to rule out MS? (6) if he is so convinced I am just suffering from stress why has he not discharged me? (7) Can I have another MRI as the last one was 6 months ago and I have had 2 “attacks” since? (8) Can i have a lumbar puncture? I have also put in a complaint to BUPA about him, and if he is of no help in the next consultation I will be putting in a formal complaint about him to his hospital. In the mean time I shall research a different neurologist, I think that’s all I can do, just have to keep plodding on

Wow, from that list it definitely sounds like an alternative neurologist is in order! Good luck with the work thing, I am currently signed off sick so I understand the dilemma.

Hiya, what a horrible time your having.

I hope you get the tests and treatment you clearly need soon x

Sounds like you’re having a rough time at the moment. Good for you for continuing to work as much as possible.

I would definitely be researching another Neuro if I were you, and pinning your current one down next time you see him!

I just wanted to say thank you, too, to Alison for pointing out the ‘Near Me’ section of this site. I hadn’t spotted this before, but ave now been able to establish that the second Neuro I am waiting to see is in fact the MS specialist for this area, so I’m really pleased!

Good luck with everything, Bunnythecat.