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Advice on possible misdiagnose

I was diagnosed with PPMS back in 2010.

My original symptoms was pins and needles in my right foot after running for 20 mins on a treadmill and optic neuropathy that originally I thought was some sort of retina problem, but the eye specialists said my eyes were fine. Being an IT nerd I started reading up and suggested I might have MS. Which the neurologist laughed at. But he did tests and a lumbar puncture and then announced that I have PPMS. Bugger!

In Jan this year I had a major event that meant I couldn’t lift myself off the floor for two days. And from using crutches to get about bought a wheelchair. Again reading I saw something about PRMS and got an appointment with my MS Nurse. Who basically said I was silly and probably had a urine infection. So got my GP to do some tests…nothing wrong with my waterworks.

I’m now so bad I’m permanently in a wheelchair, but as I work I’ve been told the council won’t fund any adaptations. So have been living with urinal bottles, a commode (all bought by me) and might struggle holding my whole weight on stair bannisters to get upstairs to do my bowel routine every three days, and then be able to sleep in my own bed. So much my five year old gets put out when Daddy wants to sleep in his own bed. I’m virtually housebound, which is difficult when I work, only with getting over the steps at the front and the back of my house by having to fall in our out into a second wheelchair. But applying to the council they say I’d need to fund a £38k loan before they’d even help with a penny!

I’ve gone from the strong one in my relationship, to the dependent. And my girlfriend doesn’t like that.

Falling down the stairs twice my GP demanded I see my Neurologist. So I saw him, and even though he seemed to be falling over himself to help some 80+ year old in the waiting room, even calling in some social workers to help her as they wanted to give her morphine (pah pain! constantly in it and just deal). And then she walked off, no stick, no wheelchair, just a normal 80 year olds gate!!! My appointment I felt I was being rushed out. Suggested he would admit me to build a case to help me get funding, but no beds, so assume that won’t happen. But because I had a list I said about relapses, so he gave me s five day course of steroids.

And just after one dose I felt amazing. Bit light headed. But I can stand. I can get up the stairs when I want, I answered the door to the Postie standing when normally I have to ignore him or crawl to the door and greet him sat on the floor (just a bit demeaning), I can pee like a racehorse, I can do s number two, I can fart (God I’d just forgotten about farting and when I realised I could do it again was a surprising victory), I even manged a shower, yes my legs are weak but sitting in a wheelchair for the last year is going to cause loss of muscles.

Now as far as I’m aware steriods don’t do anything for someone with PPMS! Was I misdiagnosed? Do I have an aggressive form of Relapsing MS? If I’d been on drugs to handle relapses might I still be running, no stick, no crutches, no bloody wheelchair?

Should I be seeking legal advice and sueing somebody? My life is likely ruined, and you can’t get your life back. The only reason I’m still here is I didn’t want my daughter to grow up with no Dad. A crippled Dad is better than a dead one. But should I be this disabled? I’m elated to have some function back. But that’s tainted by ‘what if’, I’ve had five years of “you have PPMS, so there’s no treatment, better get used to fading away”. But what if doctors have thrown away my life because they couldn’t be bothered?

Sorry for the long rant. But I’m at my wits end.

Hi HC and welcome to the board.

What a rough time you’ve had!!!

You are absolutely right, steroids do not work on PPMS… so it seems you MIGHT have either RRMS or possibly PRMS (progressive relapsing… which I don’t know much about and don’t know if steroids help).

I would say you have been misdiagnosed… but it’s really tricky as MS is SO difficult and can present itself so differently in every individual.

I think you would be wasting your time sueing anyone… it is such a difficult thing to diagnose or work out what ‘type’ you have I don’t think you’d have a leg to stand on (excuse pun!) in the law courts.

What you do need to do is see the neuro again and sort out what’s going on. IF you do have RRMS then there are other DMDs (disease modifying drugs) that could help you stop having relapses.

In your shoes I would consider changing my neuro. Research online and see if you can find another neuro which you could travel to who is also an MS specialist (not all neuro’s are MS specialists). Then see your GP and say you want to be referred there. I think you’ve got good reason to be referred to another neuro!

Best of luck… let us know how it goes.

Pat xx

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Tried to call the MS Nurse to ask whether they could at least extend my current course of steroids and she’s on leave. Now we all need a holiday, but her voicemail rather than directing me to another MS specialist just asks me to call my GP. Who as good as she is doesn’t have the knowledge to help me.

This just seems typical of the treatment I’m being given.

What really gauls me is when you’re diagnosed with PPMS the attitude seems to be “bye we’ll see you once a year and watch you decline”. Surely all MS patients should be offered disease modifying drugs to see if they help. In five years this is the first drug I’ve been offered.

The trouble is HC is that nothing works for PPMS. They’ve done trial after trial and nothing works and most of us agree with our diagnosis, we know we’ve got progressive MS.

Yes it is annoying that they only will see us once a year, but on other hand if there’s nothing they can do what’s the point in going more often?

Since I was diagnosed, only in 2008, there’s been a big surge in research and trials for PPMS worldwide, so it’s not as if we’re being ignored (which was the case previously). Look up ‘The Progressive Alliance’ (think that’s what it’s called)… they’re working hard to find treatments.

Have you looked into LDN? That does help lots of people. Very few neuro’s or GP’s will prescribe it because it hasn’t gone through tests for MS but lots of people swear by it.

Go to ‘The LDN Research Trust’ website for info. If you want to try it the site explains how you can get it privately for low cost.

Hope this helps,

Pat xx

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Pat xx

Sorry, off topic point. I’ve read half a dozen (at least) posts shere they say the ms nurse is on holiday. Are you all in the same area ? Or are there hardly any ms nurses about ? Or are they constantly on holiday ? Or have the same month off ? Hang in there H of C. Hope you get your answers… Andy

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Hi HC

Pat is right, I have had this for yonks and nothing has ever worked for ppms, but recently trials are happening and (hopefully) someone will discover something that will help, which will improve for newly diagnosed people.

I appreciate things are really difficult for you, but please hang in there, come on this forum, ask questions, have a rant or whatever helps.

I hope things improve for you soon, take care ((((hugs))))

Pam x

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Thanks for the comments, I’ll look into this LDN. I’m trying everything that I can, have even started vaping
CBD oils, no not a smoker but spasms were killing me, whole body would spasm if I lay down.

I’ve joined the Progressive alliance, seen some interesting developments that seem to be going on, really interested in Anti-Lingo and stem cell research, although tinged with concerns as I work with scientists and see some are more interested in grants that won’t really help. Obviously lots really committed, so I’ve volunteered with the MS Society to help in the grant assessment process.

Oh and I thought my name would be displayed, will remember to sign off with my name.

Thanks

Steve

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Hi, Steve,

Iv’e just read your post, and i have to say I’m both saddened and disgusted by the way you’ve been treated…I feel as if its been a long journey for me too and i’m no where near the end of it…Please don’t feel as if you’ve wasted your life, yes things may have been different but I’m sure your family love and value you. Have you thought of getting a second opinion, I’m in the middle of trying to do that at the moment, don’t let them fob you off, you have a right to a second opinion.

Take care Michelle x

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Hi Steve

I take baclofen for my spasms and stiffness, and whilst it doesn’t put an end to it, it does take the edge off.

Have a word with your GP or MS nurse if you have one, and also if you have nerve pain, ask for help with that, either amitriptyline, gabapentin or ssuchlike.

Hope this helps

Pam x

I’m also a bit in between on that, diagnosed with PPMS but after a conversation with my rehab consultant I got referred to London and it all went a bit mad - the consultant agreed ongoing bowel issues might have been relapses (plus there was a few things I remembered) and my MRI showed new active lesions and other resolved ones. Mobility wise I’m worse but the steroids sorted out bowels twice (urgency & frequency) - he recommended 3 x DMDs but then I qualified for a stem-cell treatment for rapidly evolving MS!! I was told by Gastro & Neuro that bowel problems couldn’t be MS related as I wasn’t that advanced. 2 years on from that Gastro have finally ruled out Crohns. I think anyone who suffers from IBS knows how much that can ramp-up when stress gets involved.

Anyway, after my stemcells didn’t grow I asked to be referred back to my local hospital. The Doctor I saw still thinks I present as PPMS but given this is something that can’t be 100% proven and my preference of DMD (Tecfidera), he was happy to give me Tec for a year and he’ll take me off it if I deteriorate over that time - simplez

I’ve just ordered a CBD product too. I get Nabilone (man-made cannabanoid) off-licence, I had no idea such a thing even existed til I got it. If you’re in Scotland you can get it for MS tho. I find all this stuff is so bloomin’ complex. Anyway, the Nabilone really does work for me but can make me a little forgetful so I don’t even take my full prescription.

My tec is being delivered tomorrow so this weekend will be the test. Crossing fingers, toes etc. Good luck it sounds like MS has steam-rollered your life, it seems to make a habbit of that

Sonia x

Hi Steve,

Welcome to the boards.

You have already had fantastic advice from all the above people.

Obviously we can’t say if you have been dmisdiagnosed but I would be looking for another MS Specialist myself.

AS has been said, there isn’t any treatment at the moment for PPMS. There are treatments to help manage the pain etc, but no treatment for the PPMS. In England at the moment there are 11 treatments for RRMS.

My Specialist doesn’t want to see me either, just one every 18 months to chart what is happening. This is because he can’t offer any other treatment.

I understand that this is hard for people to get into their heads but there it is.

I was originally diagnosed with RRMS. Had a couple of years of DMD’s like Copaxone etc, did not help at all. In fact they made me very ill. That is because I did not have RRMS. I also had several courses of steroids which again did not help at all. That is because I did not have RRMS. I have since been diagnosed with PPMS. I have pregabaline to help with the pain and that is it.

I would urge you to get a different MS Specialist and get a second opinion.

I have learnt that you have to be hard in this game and really push for yourself. No one else is going to do it. You have to. That is not to say that your family and friends won’t help you of course. But you have to be the specialist in your disease. Many G.P’s know sweet Fanny Adams about this disease. My own GP honestly told me that and then read up all she could.She had never had a patient with it. I can understand that.

Regarding work. The Council, by law, has to make *reasonable adjustments" to your work place to accommodate your problem. I obviously don’t know anything about your work but examples might be : placing your work station nearer to the toilets, making a parking bay nearer to your office, adapting your computer if you have eye problems. They have to by law. That doesn’t mean that you will get everything you ask for but you will get “reasonable adjustments”. It may have to be fought for but you will get it. Do you have a Union Rep. you can speak with?

My other piece of advice would be. Everytine you see a Dr. or a Specialist, take someone with you. They can take notes on what is said. You will be listening but believe me you don’t always hear or listen to it all. You wil then have notes to refer to when you can’t remember things.

Hope this has been useful. Please stay on the boards and let us know how you get on. Life with this disease can be difficult at times and you will ALWAYS find someone on here who can give you advice, tell you where to find things or just listen to your rant. We all need to rant some times. Even our other halves, who don’t have the disease, don’t understand fully what this can be like, even though they may try.

May I wish you luck and hope to hear better news from you soon.

Anne

x

Steve LDN is the best thing I’ve tried…it doesn’t suit everyone but it certainly suits me…it’s improved my bladder, my bowels, my relentless skin problems( itching and soreness) and my walking has very very slowly improved…I’m sure it must be the LDN because until recently that was all I was taking that could possibly improve my walking.

I’m now trying Biotin as well…as yet I’ve seen nothing that I can say has improved but neither have I had any side effects and it’s thought it can take nine months to help.

To research LDN the best place I can recommend is the LDN Trust.

Hope that helps, take care, and by the way…a huge welcome to the forum…I found it a godsend to find so many kind and helpful people that really understand how I’m feeling!

Nina x

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Steve LDN is the best thing I’ve tried…it doesn’t suit everyone but it certainly suits me…it’s improved my bladder, my bowels, my relentless skin problems( itching and soreness) and my walking has very very slowly improved…I’m sure it must be the LDN because until recently that was all I was taking that could possibly improve my walking.

I’m now trying Biotin as well…as yet I’ve seen nothing that I can say has improved but neither have I had any side effects and it’s thought it can take nine months to help.

To research LDN the best place I can recommend is the LDN Trust.

Hope that helps, take care, and by the way…a huge welcome to the forum…I found it a godsend to find so many kind and helpful people that really understand how I’m feeling!

Nina x