Final diagnosis after a decade with PPMS

Primary progressive MS
1

Hi after a long journey a big chunk of my life, I have finally got it in writing progressive MS, I am assuming he means PPMS.

Its taken such a long time, but slowly now in the last year my mobility is worsening, the pain is dire and I am exhausted with fatigue, its just on going all the time, some days are easier then others, but the nights the worse.

Is there anything i should be doing now to make it easier for me to cope with? I have just been offered Cymbalta, and seeing the pain clinic. I dont do drugs very well and have to see my GP as there may be an issue with the drugs the neuro wants me on as I have high blood pressure too, and a rare form of epilepsy.

I would love some respite from pain is it normal in PPMS to have ongoing pain all the time?

I am relieved i have finally got a diagnosis, but a bit scared i suppose to go from not MS to PPMS lol, at 65.

I still have mobility but cant go out now to walk as its exhausting but i do in the house i furniture walk and try to keep mobile as much as i can. I would love to go out for a walk. I dont drive anymore either not just because of the issues with the MS but the epilepsy thing as well.

Anyway just wanted to say hi and in a way its kind of nice finally belonging somewhere. xxx Rosie

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Hello, Rosie.

Yes, I suppose itā€™s a relief to actually know. My diagnosis took about ten years. It seems as though doctors are very reluctant to diagnose this. I was given a variety of rather flimsy reasons for my developing conditions. As for the pain; your symptoms sound familiar to both mine any many others. By pain, Iā€™m assuming you have cramps, stiffness, spasms and inflamed nerve endings as well as the fatigue. One of the best things to do on here is to just ask because someone will always have some good suggestions.

Are you getting any DLA? Iā€™ve found it really helpful, especially after retiring through ill health. Have you tried a mobility scooter to get around outside. There is such a variety out there.

My brotherā€™s partner, also called Rosie, has recently been diagnosed with epilepsy. Thatā€™s the end of her driving days.

Anyway, thanks for introducing yourself, I hope you will find this site helpful.

Best wishes, Steve. x

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Hello Rosie,

Welcome to the club. There is a heavy entrance fee but no dress code.

Your story is very familiar. I am 62 but I was only diagnosed with PPMS in 2014 after a long period in limbo. I found my diagnosis a relief as it confirmed my thoughts and placed my life in perspective.

Like you, my walking has worsened together with my balance. I use a rollator and a scooter now, but not at the same time.

As for pain, I suffer from pretty constant neuropathic pain in my right leg. It responds to Gabapentin if I have a quiet day, but if I am moving a lot then I do suffer. Today I walked to the library, using my rollator, and crippled myself. Serves me right but I did enjoy the walk.

To help with fatigue I have started taking 2500mcg daily of Vitamin B12. I believe it works better if given by injection. It is something you could discuss with your MS nurse. There are prescription pills for fatigue which might be worth asking about.

I also take 5000iu daily of Vitamin D. I will be requesting a blood test soon and discuss the results of my plasma levels with my GP. Please see the link below.

http://multiple-sclerosis-research.blogspot.com/2016/01/researchspeak-moderate-dose-vitamin-d.html

I am sorry to hear that you have other health issues, in addition to your MS. As if MS is not enough in itself.

I assume that you will make contact with your MS nurse now that you have a diagnosis. It is worth establishing a good relationship with your MS nurse as he/she can provide accessible support and can recommend/prescribe medication.

If you are able, I would recommend seeing a physiotherapist; I have a number of easy exercises to do to help with core strength, walking and balance. They make me feel better, if nothing else.

Alun x

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Hi Rosie

Welcome to the ā€˜clubā€™ that no one really wants to join, but there are lovely people here, always willing to listen, and offer advice when they can.

I completely understand your feeling relief on DX, that was how I felt, to know you werenā€™t loosing your marbles having such strange symptoms, and this forum is great cos we all understand.

Sounds like you have neuropathic pain, which I can feel most days, just varying degrees, it has a mind of its own. There are medications you can have to help me amitriptyline, gabapentin and pregablin, have a word with MS nurse, neuro or GP, you do not have to suffer in silenƧe.

Mine always appears worse in bed whilst trying to sleep, but I donā€™t fair too well with medication, so do not take sleeping tablets. I think itā€™s easier to deal with during the day, as you can find distractions, but not so easy at night.

Take care, look forward to seeing you here again.

Pam x

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Hi Rosie, welcome to our friendly club x.

Yes it is a good thing to have a diagnosis and confirms itā€™s not your imagination. A lot of us have been in that limbo land and even though the dx is horrid, at least we know for sure that itā€™s a real medical issue.

My initial signs began in 2000, first MRI in 2005, dx RRMS in 2011(driving licence revoked immediately). On seeing a second Neurologist consultant in 2015, he confirmed PPMS.

So most of us on here have experienced the problems, difficulties, waiting around because of the vagaries in MS.

Neuropathic pain is the pits. I used to describe it as raging toothache in my legs. I was given Amitryptaline, then Gabapentin and then Pregabalin for the pain. They helped but not completely.

Good luck along the journey Rosie, remember, we all understand and thereā€™s usually someone who can give advice or answer questions.

Chrissie x

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Hi Rosie,

Just like you and the others I too am on this PPMS journey so Welcome Aboard. I too am in my 60s. I never thought that at this age I would develop MS never mind PPMS as I know there is no cure only symptom management. I had to press my neuro for a diagnosis as I could hardly bare living in limbo any more after a year of pains and wobbles. In retrospect I had severe bouts of fatigue for years which were never explained. I am so sorry you have had to wait such a long time for a DX. It is such a relief to give a name to all the symptoms you mention and more. Sometimes thinking I was imagining much of the troubles I had, ā€œlosing your marblesā€ as Pam says. As a fairly recently diagnosed MS sufferer, and I will say sufferer as this condition becomes your whole focus. You seem to be at a similar stage to me too. What with the furniture/walls walking indoors and the lack of ability outdoors.

I am on Gabapentine which I understand was originally developed for epilepsy. Please donā€™t waste time before discussing with GP/MS nurse/neuro what meds be be suitable to try. It can be a bit of trial and error but worth it eventually as easing pain even a bit can make such a difference to your emotional and physical well-being. And, yes pain can be ongoing and varying. Nights are worse for a lot of us too. Hereā€™s me at three in the morning, more usual than not, up for more pain meds and a cup of tea before going back to bed for another couple of hours sleep - maybe if Iā€™m lucky. Iā€™m getting used to this too.

You sound so brave. Sounds too that you are ready for some kind of electric mobility ā€œmachineā€ for getting out and about. Please give it some real thought. Welcome again on this journey with us. Just to be able to ā€œtalkā€ safely with those who understand what you are going through can be and is the best support I have known so far even with a super supportive family.

Big hugs.

Kindest regards, Anne

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Ah thank you all guys for lovely welcome, i am finally HOME. I said to my neurologist its not having a place to go and just socialise with other people that hurts so much too. I got so fed up with my family never taking me seriously.

I mean when you get a wedding invitation and you know you cant attend you are made to feel so guilty. Its why cant you travel an hour to see your niece get married. Well because it just isnt the hour there, its the 3 hours in between and the hour back, which puts you down for nearly a week in excruitiating nerve pain, like one other said above like having massive toothache in your legs all day and the fatigue so bad you just want to cry with it. Thats why i dont want to go, not because I am being awkward. They dont get it.

Sadly i have to face a terrible day tomorrow my mums funeral, i cant really talk about it, as it hurts too much, but i know that is going to wipe me out for weeks, BUT I am going to read her a poem i am determined to do it. She knew, she was always so good with me. Its my siblings who seem to just ignore the fact. I got the diagnosis right in the middle of the funeral arrangements I wonder if god is having a laugh at my expenseā€¦

I have always gotten DLA even without a diagnoses indefinitely, my DLA doctor told me way back in 2008 she was positive then i had MS, and could see a pale disc in the back of my eye. She was right all along lol.

I have mobility scooters, as i take my dog out for a walk, i live right opposite a large park, so we can go out together and i get fresh air. It was only 2 years ago i could walk out with stick, now i try with rollator and struggle to walk just up the outside path and back. I cant believe how it makes me feel, like i am walking in concrete and my stupid left leg is just dragging itself lol.

The neurologist has tried me on the meds, i think i am going through the alphabet lol. I have tried amytript, gapapentin, some other obnoxious thing, and now a new medication called DULOXETINE / Cymbalta. Besides the stuff i take for my weird epilpesy thing, Diazepam 2mg for the spasms at night, and Propanonol for my blood pressureā€¦

So can I get an MS nurse then? I thought perhaps they were only for younger people with RRMS dont know why i have that in my head. My neuro is sending me to the pain clinic for assessment for pain management but i expect that will take several months. Its daft though isnt it, as prior to diagnosis i was coping with the pain for years on my own, now i can get all this attention from specialists lol.

I have a good report with my nurse in our practice for my urinary issues which are dire. I read somewhere that is an issue with PPMS too.

I do keep happy and have always got loads of friends on the Internet and some we talk on phone now too.

Thank you so much for your warm welcomes it really helps to know finally people understand me. xxxxxxx

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Ah thanks Anne, i am not so much brave as a survivor lol. I think to myself i knew it was MS all along, it was just convincing the neurologists lol. If I hadnt had lots of positive stuff i would have just given up, but i know tests dont like. I started with a positive VEP test showing Optical Neuritis bilaterally (which is quite unusual apparantely), then lesions in betwen, then finally at the end recently another VEP test as my left eye wasnt doing what it should do and it was positive again with high factor for ON, so i had the old VEP sandwhich lol.

I take a diazepam 2mg when my spasms wake me up. I determined to just snuggle back and go to sleep and it does work for me unless my dog wakes me snoring lol.

I tell you what has helped me, since i started this journey. A blanket cage over my legs. my GP ordered me one. It keeps the bedding off my legs which stops them getting too hot, it really works.

Sending you big hugs back. xxxxxxx

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Hi Chrissie, weirdly my first main symptom which scared the hell out of me was 2000. Although, i am convinced i have had it since 1981 as i used to wake up with dead left arm, for months and tingling fingers, but told it was smoking 5 cigs a day. When you look back on your life, do you remember having little pockets of weird things going on, as I do. It got to the point i felt i was going nuts lolā€¦I have fell 3 times down stairs over the years because i felt like i had lost time and space not sure how to explain it, one fractured coxic and twice fractured foot later lolā€¦and no i didnt drink ha ha.

I love your description raging toothache is exactly what I have described my pain as.

I remember too some years back watching a Charles Dickens story on the telly, and suddenly having the worse burning sensation which ran around my stomach right across to the back for about 5/10 minutes I didnt know what to do with myself. I wonder now if that was all connected. So many things that all make sense. Like having to ring my PA at home when i was working and asking her to take me to work as i couldnt drive as I had weird pins and needles in my legs. I saw the GP who said it was just my tablets lolā€¦for UTI.

Yes I had so many weird things I told one of my tutors i felt someone was sticking pins in me lol.

Thank you for taking the time to comfort me. xx

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Morning Alun, i am seeing my GP on the 30th, and will talk to her about MS nurse and perhaps physiotherapist. I know my GP and neuro took their time to get me here, but i do have to say they have been amazingly supportive to me. My GP even recommended i had a stair lift through a grant. I think she felt guilty as she was tied to constraints.

Looking at all the lovely people who have taken the time to answer it should be the Pensioner Progressive MS club lolā€¦its true then, it does seem to affect people older. Hey we not only get our pension we get free entry to the longest rollarcoaster ride in existence lolā€¦

Sorry my spelling is awful, it went down drastically when all this started lol.

Hugs i have a lot to think about. xxx Rosie. x

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Morning Steve, did you know you had MS? I didnt even know what it was to be honest, but kept having weird things happen. When it finally twigged I really did think it was that all along, and started to trace back on my medical notes (I bought them), all the things that suddenly made sense. The sudden onset of constant urinary infections, fatigue, myalgia in my legs, dropping things, balance off all the time like i was walking on shifting sand, weird sensations in my left leg and foot, like walking through wet freezing grass lolā€¦the list is endless.

When i saw my neuro for the first time in 2006 in November i paid for the appointment and the MRI as I wanted so much to get back to work after a crash in September where i coudlnt walk.

It was all left sided weakness, dead foot upto knee (he stuck me with pins and i never felt them until above the knee then boy he nearly got a thump lol)ā€¦so its always been left sided, with right side mostly burning, fizzing tingking etc you know the score.

I get the worse cramp now in my toe left foot ugh, it sticks up in a vulcan salute, its agony, it affects the ankle, and my calf they go into cramp, and my thigh too, like a vice. Up my left side, around my rib cage crushing sometimes even ended up emergency in medical centre for an EEG for my heart lolā€¦

Phew i am exhausted now, so will sign off. Never wrote so much in one day. Thank you again for taking the time to say hi. xxx

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Hi Rosie,welcome to the forum.

j x

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Hello Rosie, Ivā€™e just read all of the messages. Iā€™m glad that you have now got your diagnosis. It must be such a relief. Iā€™m still in limbo, Ivā€™e had to use a wheelchair since May 2013 when after months of wobbly legs and other symptoms the lot went following a minor opp. Thankfully ivā€™e got some of it backā€¦wall and furniture walking inside. At the time I was so scared and felt that i would be housebound, but after getting my power wheelchair and Frazer my assistance dog my life is so much better. I still get my black days and the lack of a diagnosis is the thing that probably gets me down the most, however iā€™m determined to make the best of what ivā€™e got. CBT really helped and having a good husband and wonderful children and of course my lovely friends on this forum.

Michelle x

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Rosie,

Thank you for your reply. I like your interpretation of PPMS.

Yes, you are entitled to all the services you will need such as the MS nurse, Physiotherapist, Continence nurse and the OT team. The way you are referred is a postcode lottery, regrettably.

Where I live I can refer myself to all those services. Speak to your GP or Neuro receptionist and they will advise you.

The OT people came out to assess my house and within weeks all sorts of grabrails had been fitted, raised toilet seats installed, perching chairs issued, sofas raised and all for free.

The Continence will provide valuable advice over your bladder issue, once the UTI possibility has been eliminated or confirmed. Mine helped me a lot.

I appreciate that this is not the best time for you to take on these tasks, with your Mumā€™s funeral looming. I hope you get through your reading and the rest of the day.

Please ask about anything and one of use will do our best to help.

Alun x

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Hi Rosie,

So sorry to hear you ate struggling so much at the moment.

Just wanted to let you know that I take Cymbalta although it generally seems to be called Duloxetine in Englandā€¦itā€™s a great medicationā€¦Iā€™ve tried Amytryptaline and Gabapentin for pain but in my opinion Cymbalta is much better. I have no side effects from it at all.

I really hope it helps you,

Take care,

Nina X

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Hi & welcome.

I think the types of MS are a bit blurry to be honest. I was diagnosed with PPMS and after a lot of pushing I somehow got to see a consultant in London and he was right on it with DMDs and drastic action was requiredā€¦ MRI somehow got me on a clinical trial and then that fell thru as my stemcells didnā€™t grow. Went back to local doctor as I felt a bit bruised. On a DMD (tecfidera) but they still veer towards PPMS and I might get taken off it soon as I have still gone downhill overall. At this point I think PRMS but weā€™ll see.

Iā€™m taking pregabalin for pain. The definition of neuro pain is different to normal pain too. It basically mean the messages are wrong so you feel things that arenā€™t really accurate to whatā€™s going on.

Sonia x

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Hi Alun, i am so lucky i have had all the assessments by the OT, grab rails, the lot and incontinence nurse etc. Even though i wasnt diagnosed with MS, the neuro always said i had an Neurological Inflammatory Disorder.

I am so looking forward to seeing my GP on the 30th, so i can finally say well there you go I told you it was MS lol. Thank you for taking the time to answer me.

x

ALL of you. x

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Hi Nina, i am hoping to start the cymbalta, but there are certain things in the paperwork that tells me i have to talk to GP first, so have booked for 30th. I am on so many tablets lol, i shall rattle. xxx

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Hi Rosie and welcome. Iā€™m sorry to hear about your mum, you really didnā€™t need to get hit with that at a time like this but I agree, having a dx, especially a realistic one is a huge relief. Iā€™m 46 and was in limbo for only 2 years but it was totally unexpected, I went from a slipped disc in my lower back to a spinal cord injury in my neck that needed surgery and MS. Once I got the dx though I realised Iā€™ve almost certainly had it for a number of years but I was a stubborn fool that was really hard on myself for being a wimpy hypochondriac.

I also struggled with nerve pain and although it took many months of trying different drug combinations and doses Iā€™m now reasonably comfortable. It doesnā€™t take much to overdo it or hurt myself but I also have quick acting syrup I can take between doses if I need it. Fortunately I have a gp who listened and persisted with my treatment to get me to this stage. I hope your referral to the pain management team will be successful, they specialise in controlling all different types of pain so I hope they can get you comfortable.

As the others have said, itā€™s a nice group and everyone has helped and supported me, I definitely wouldnā€™t have coped as well without them. Their experience in coping with symptoms is much appreciated and they often have tips you wouldnā€™t find in any text book. You appear to have the relevant assistance from the OT etc and yes, you should be referred to an MS nurse. Theyā€™re a godsend when you have questions or are struggling.

Take care.

Cath x

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Hi Rosie,

I have been in limbo for a long time too. You said that you had an MRI scan in 2006 - was it clear which was why you did not get a dx then. Also have you had a lumbar puncture ? I am interested as to why your neuros were reluctant to dx MS.

I have seen 3 MS neuros locally who all were reluctant to dx MS as I did not satisfy the McDonald criteria. Saw a London neuro in in Jan 2016 and been told it is RRMS. Well I think it is more like progressive because my mobility is slowly getting worse. Although I have sensory relapses which I get better from which is why I have the RRMS Dx plus the fact that I had an enhancing lesion in 2013.

To be honest I think it is more difficult to get a dx the older we get !

Moyna xxx

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