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Frightened & unsure of future

Hi

where do I start. I noticed a heaviness in both legs & arms after working out in Jan2018. Over the passed 7 month this fatigue has gradually got worse. I played golf last month and could hardly walk after completion. I informed the doctor in March and he put it down to stress. I since revisited last week and he has now referred me to visit a neurologist.

I have no problem walking - just heavy & tired legs at the end of the day. When I stress or think about the symptoms the tiredness & fatigue seems to get worse. No other symptoms.

I am sure I have PPMS as the symptoms never go & are always apparent. I am 46 .

Does anyone one have any advice or thoughts ?

has anyone experienced the same symptoms.

I’m going out of my mind here with worry. I’m tearful on a daily basis and slowly sinking to rock bottom. If it wasn’t for my supportive wife - god knows where I’d be.

Many advice would be gratefully appreciated.

Regards Gavin

hi gavin

i have heavy legs and quite severe spasticity.

these weren’t my original symptoms though.

it was pin and needles that made me go to the gp.

as for PPMS forget about it because you need a diagnosis first.

also one of the latest drugs is for PPMS (ocrelizumab).

as you have noticed stress just makes symptoms worse so calm yourself.

deep breathing whilst counting helps me.

inhale 2 3 4 - exhale 2 3 4 5 6 7 8

it’s better to exhale for longer than you inhale.

exhale as if you are blowing.

it wakes up parts of the lungs that are a bit lazy.

let the neuro do his job.

good luck

carole x

Hello Gavin

First of all, don’t count your chickens before a neurologist says how many you’ve got. (Ie you don’t have MS until you’ve seen a neurologist, had at least one test - likely an MRI - and the neuro says the words!)

Secondly, even if you do have MS, it’s much more likely to be relapsing remitting. Only 15% of people diagnosed with MS have PPMS.

In terms of MS, there are lots of disorders that share symptoms. So it’s not actually even likely that you have MS. There are may people who come on this forum convinced they have MS (and often that they have PPMS) and it turns out that they don’t.

With regard to your symptoms never getting better, you’d need to have the same symptom for about a year, with it never letting up before you can say it never gets better. And even then, many people have RRMS diagnosed and they never recover from their first symptom. (I think Carole as well as me fall into that category.)

So, as Carole said, relax. Wait for your appointment, (you are going to have to learn some patience here and learn to live with the worry, answers won’t come too fast) and let the neurologist do her/his stuff.

Best of luck.

Sue

It’s primarily a young adult disease.

Might be something else.

I was 24yrs when I had my first symptoms - 47yrs seems a bit old.

Have you had a burning pain at all? Like your nerves are melting.

I was diagnosed with progressive MS when i was 65. Mind you not sure what type of progressive it is, neuro just wrote letter with progressive MS. I had my first symptom which made sense to MS in 2000. 16 years later… i know a lot of people diagnosed in their forties.

Thanks everyone for their support. I can’t believe how positive you guys are compared to me.

I visited my GP yesterday and he thinks I could be heading for mild depression (given these uncertain circumstances). He asked if I wanted a SSRI anti depressant - which I agreed.

Additionally. he tried to reassure me that it was only a very minor chance that MS was the underlying issue.

Took the pill and woke up this morning feeling terrible. Dull pain in head & a bit shaky.

Has anyone else tried the SSRI medication & how did it affect them

regards Gavin

keep an eye out for any other side effects, that is assuming you’ve started taking them.

there are lots of different SSRI’s available so if the side effects outweigh the benefits ask your doctor for a different one.

maybe give it a week as side effects often settle down.

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i was put on citaloprim lose dose and it made me feel a bit rough, it takes time for it to settle in your system.

I disagree that it’s a young adults disease. Rarely children are diagnosed. Frequently people in their 50s, 60s, and older are diagnosed. As CC says, sometimes it’s progressive from the date of diagnosis because of years when it might have been relatively quiet, but relapsing anyway.

People at all ages of life are diagnosed with all forms of MS.

For late onset MS (which generally means over 50, so Gavin doesn’t fit this demographic), see https://www.mstrust.org.uk/research/research-updates/update131014-can-ms-begin-over-fifties

Sue

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I was diagnosed with PPMS last autumn aged 66. Even looking back carefully through my medical records and thinking back over the years, I can’t find any possible symptoms before 2013 and really none that I can fully recognise as ms before 2015.

Definitely not only a young person’s disease.

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I was put on Mirtazapine and it did make me a bit woozy headed - more than usual! - for a few days, with a buzzing sensation on lying down after taking it. I found taking it at night better than daytime and it all settled down and had no other side effects, but my mood seems better a few months on. It can take a month or so but if it doesnt suit you then ask to be changed to something else, there are plenty of alternatives. Keep going with it but dont be afraid to go back to your GP.

I know what you mean about the anxiety of having something wrong, it doesnt sit well with anyone, but then thinking of the worst that can happen will make you anxious too. Try to take a day at a time and enjoy your family and do something different to try to distract yourself when you find yourself thinking about it. Easier said than done I know, but advice for myself too.

Regards

Julie

Thanks again for all your comments. I wish I’d found this forum months ago. Your knowledge & advise are deemed a lot more beneficial than my GP. I’ll post any progress as and when it happens. Regards Gavin

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My first symptom was when I was 44. Diagnosed RRMS at 45. I now know personally people around my age and older who had first symptoms in mid forties and early fifties and are RRMS. I’ve actually seen a graph now, of age of diagnosis and the peak age diagnosed are mid to late twenties, but the 30s and early forties weren’t far behind.

I briefly took amitriptyline, not for depression, but mainly as a sleeping aid, I was sleeping terribly at the time.Other benefit for me was it can prevent migraines and help with nerve pain, I was getting these funny spasm feelings in my thighs at the time. I was only on a low dose, 10mg. I was at the time feeling dizzy before I took it and it tripped me into feeling really dizzy. I stopped taking it, but it did seem to re-boot my sleep pattern and the thigh sensations got better, not sure if I took for long enough for it to be the meds or whether they would have gone by themselves anyhow. My GP did say that the side effects should decrease over time, but for me it had done its job. As others have said, you are now referred to a specialist and hopefully you will find the cause of your issues. I did find all the waiting very stressful, but as others have said try to distract your mind with planning things you enjoy doing.

Just been given my appointment for the neurologist

November 13th. Absolutely gutted.

How can it take so long ?

12 weeks is about standard time…most neurology depts v busy these days. Try ringing the booking office and register for a cancellation, works sometimes. It is a long time to wait… If you have any new symptoms in meantime could try his secretary, she may be able give earlier appointment. Julie

Hi Gav

As Julie suggested, try to see if you can get the date moved up at all by phoning the appointments team and/or the neurologists secretary. Sometimes you can get lucky with a cancellation or a shorter wait.

Meanwhile, start to keep a diary of your symptoms. Try going back as far as you can (and ask your wife to help with this, sometimes it’s hard to remember) and see if you can put symptoms together with time frames. So if a symptom began in January and got a bit better by June, then write that down. If any symptoms have just stayed the same or only slightly improved, note that down too (keep in your mind that a symptom not getting better does not mean you have progressive MS, or even MS at all).

Try from now till the appointment to at least weekly do a round up of how your various body parts feel. So do your legs feel extra heavy this week, or is your bladder especially urgent? Do you feel bilious or nauseous? Have you had bad headaches or eye strain? Just keep some basic notes on what is happening for you, it helps you to note how things are changing and then when you see the neurologist, you’ll have some useful data to describe to him/her.

Sue

In the mean time the MS Trust is a good source of medical info:

All the best.

Well, I’ve now been in hospital 2 weeks, I’ve had that many MRI scans that I’m on first name terms with the radiographer, I’ve had the lumbar puncture and awaiting results, anyone got any idea how long the results take? Anyway, reason for my comment is I am awaiting diagnosis, the consultant says it’s likely MS, but these forums are full of letters, PPMS, CCMS etc and I haven’t a clue what any of them mean, so some help would be appreciated. Thanks.

hi charabanc RRMS is relapsing remmitting multiple sclerosis SPMS is secondary progressive multiple sclerosis.(which usually a progression from RRMS) PPMS is Primary progressive multiple sclerosis which is a more steady decline without relapses. also you’ll get more replies if you start a new thread or new post (can’t remember which). there is a button one third of the way down the front page of the forum - NEW THREAD (or post). you have tagged onto the end of a different thread. carole x