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MS or stroke?

For many years now (at least 10) I have suffered from ill health and have often wondered why I have so many apparently unrelated symptoms. They include the following: burning feet and legs at night, painful left leg, numerous falls, burning pain round thumb (quite recent), mild electrical sort of buzz in fingers,crawling feeling and numbness in right thigh (quite recent), sharp pain in eyes, blurred vision, deterioration in sight to point where can only read enlarged font Kindle and have to increase size of font on computer to at least 150%, chronic back pain (for 15 to 20 years), fingers going into spasm, spasms in right arm and leg, coughing fits and swallowing difficulties (endoscopy last year was clear), bladder problems, numbness and tingling in both hands (nerve conductivity tests showed ‘very severe’ carpal tunnel syndrome but operations on both hands have failed to correct it), general itching and deep itch in two particular areas, chronic fatigue, severe pain in big toe (this may be gout), hot sweats (long past menopause), cold shivers, sleep issues.

Blimey! Even I hadn’t realised how long the list was until I came to write it down.

As I say many of these have gone on for years, varying in degrees of severity. I did go through a particularly rough patch about 5 years ago and then again last year. Then in September I had two or three episodes of my right leg giving way, almost as though it’s strings had been cut. My left leg held me up and prevented me from falling as I grasped onto something. This distinguished it from many previous occasions when I had fallen completely for no apparent reason.

On October 1st my leg gave way about three times in succession and I rang 111, they sent a paramedic, he called an ambulance and I was admitted to the Stroke Unit that night, where I remained for the next seven and a half weeks.

I was treated as a Stroke patient right from the start but there were anomalies. I had none of the warning signs from the F.A.S.T advertising. My face didn’t fall either then or later, I could raise both arms for the first few days and only gradually lost the use of my right arm, and my speech only started slurring after a few days (and only lasted about a week before recovering rapidly.) The thing is with a stroke (the clue is in the name!) you are usually struck down suddenly from the start. With me it happened gradually over a week to ten days. The first night I walked to the toilet but gradually lost all mobility in my right side. I seemed to lose a little more each day - mobility, speech, ability to swallow (naso-gastric tube for a fortnight), bladder control. And throughout I had a recurring sharp pain in my left eye.

As you will have guessed I am querying whether I’ve had a stroke at all or whether I’ve got MS. Or possibly both? The hospital where I was admitted, though not particularly small, has no Neurology department and of the three consultants on the Stroke Unit only one is listed as a Neurologist and his specialisms do not include MS. There is a big Neurology dept at my nearest city hospital about 30 miles away. All my hesitant attempts to discuss the possibility of MS have been dismissed out of hand and one doctor at least has said I definitely haven’t got it, although what I have read suggests it is difficult to be so certain.

So what do you think? Could I have MS or am I kidding myself? Would it be acceptable to ask my GP to refer me to the MS Neurologist? And would they be prepared to arrange ambulance transport for 30 miles away (I am now in a wheelchair).

I already feel better by getting this off my chest!

Hello

Although the neurologist you’ve seen isn’t an MS specialist, s/he is presumably a stroke specialist, given that you were on a stroke ward. Added to which, even a non MS specialist will have seen MS before and be familiar with the neurological symptoms.

I’d be tempted to believe the neurologist who’s seen you, conducted neurological tests and diagnosed stroke rather than a random group of people with MS who don’t know you or your symptoms. And aren’t neurologists to boot.

If you feel you really need to have MS considered, then yes, ask your GP to refer you to the MS specialist. As for whether they’d provide transport, you’d have to ask them.

You may feel that this is all a bit hard hearted of me, but I honestly think that the doctors and nurses you’ve been in the care of for weeks will have a better idea than us.

Sue

I’m sure you don’t mean to come across as brusque (and this is perhaps the problem with the written word rather than the spoken) but to be honest I do feel rather slapped down by your response.

I have tried to state my situation in a calm and rational manner but in reality I am feeling quite emotionally bruised by my situation. I was sent home from hospital with a urine infection which took six weeks to clear and without being taught how to transfer from chair/bed to commode. I was given a Ross return and instructions that I needed two carers to transfer. I live alone so could only use the toilet 4 times a day when carers could be present. The rest of the time I had to wet myself - or worse. My carers were absolutely lovely but the humiliation of that time will stay with me for a long time.

Eventually, thanks to the efforts of a brilliant Community Matron, I was admitted to another hospital for rehab. In only two days they had taught me to successfully transfer using a gutter frame. The first hospital also managed to mess up my physio referral so I didn’t have any physiotherapy for the first 7 weeks. Nevertheless I have worked hard to regain independence and have gone from 2 carers 4 times a day to 1 twice a day to now none. As I say I am in a wheelchair and life isn’t easy but I am coping.

You seem to be saying I should trust the doctors absolutely but with all due respect, and not wishing to play the blame game, I do have my reasons for not putting my complete trust in them.

To me there are things which just don’t add up about my illness and of course I may be wrong, and of course I have sought professional help. I came on here hoping for a little support and perhaps even sympathy. I really rather wish I hadn’t because I feel quite down and tearful now which I wasn’t before.

I’m sure you don’t intend to come across as brusque but to be honest I feel quite slapped down by your response.

I tried to state my situation in a calm and collected way but actually am feeling quite emotionally bruised by it all. With all due respect, and without wishing to play the blame game I do have reasons for not putting my complete trust in the medics.Doctors can make mistakes like anybody else. I had a hellish few weeks when I came out of hospital but have persevered to regain some level of independence despite now being in a wheelchair and living alone. I have received wonderful help from some of the medical professionals I have come across - others not perhaps so much.

Some of the things about my condition just don’t seem to add up to me. I came on here seeking support, maybe even sympathy, from people who have been through some of the same things. Probably my post did not convey the message I intended but I wish I hadn’t posted because now I feel silly and rather tearful which I wasn’t before.

I did write a longer response but it seems to have been eaten.

I’m sorry I’ve come across as unfeeling. As I tried to say in my response, I feel that we (ie the various forum members, who either have MS or fear that they have MS) aren’t in a very good position to judge whether you might have MS rather than stroke.

And that your best bet is perhaps to get your GP to refer you to a specialist if indeed you do feel you need to have the diagnosis looked at again (which clearly you do).

It does sound like you have had a really bloody awful time with your hospital. Discharge from hospital without suitable assistance to even use the loo is obviously wrong. And particularly being discharged with a UTI. And of course you needed rehab physiotherapy. So it sounds like your community experience has been dreadful and I’m glad for your sake that you were re-admitted to a rehab facility.

I obviously wasn’t aware that you have your reasons for distrusting your diagnosis. But, having said that, the forum members can’t tell from your list of symptoms that it sounds like MS, or in fact the contrary. All we can do is offer sympathy for the crappy time you’ve had.

So I apologise for being unsympathetic initially. It wasn’t my intention to make you feel bad about reaching out to this community.

Sue

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BB, please don’t be offended, Sue is a most trusted & 1 of the most informative on this forum. You must be feeling very frustrated & low right now, but the way I read the response was not a slap down, but more a truthful fact. None of us are qualified in saying this or that, experience of the bloody illness we do have, but diagnostic gifts we don’t. I am fully aware that your fears are founded, stuck between the ‘what if’ is horrible. Personally, I would be constructing a whole pile of questions & asking them. Make a list of all the symptoms you have/had. Present them & ask how they have come to the conclusion it is a stroke you’ve had. You should have been sent for tests, MRI, lumber puncture to rule out or in possible MS. I hope you get some answers very soon Tracey xx

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Hi I am sorry you have had such a rotten time and if I was you I would follow my gut instincts and ask for a referral. At least this will give you peace of mind and you will know that you have done all you can to find some answers. You may have to fight for a referral but you are entitled to a second opinion and there is always a private referral if you can afford it which would speed things up. Sue x

Thankyou for your replies. I’m sorry if my original post gave the wrong impression but I really wasn’t asking for a diagnosis. Just wanted to know if my doubts and suspicions might have some basis or not. I was interested to hear, for example, that Grandma was thought to have had a stroke initially (lovely username by the way, its been 56 years since I called anybody Grandma!)

I don’t want to go into a rant about misdiagnosis but 25 years ago, following an operation for cancer I developed a lump which progressed quite rapidly from the size of a pea to bird’s egg to hen’s egg and 2 GPs and a registrar failed to attribute any significance to it. If I hadn’t been persistent I wouldn’t be hear tellingl the tale. Doctors do make mistakes. I don’t hold a grudge, these were all pleasant and competent doctors but they made a mistake.

I will ask for a referral and I have started a symptom diary on the computer. I have lost the ability to do handwriting so can’t really take notes and I don’t have anybody to take with me to appointments but I’ll manage.

Thankyou for your commiserations about my plight when I was first discharged. It was a hellish time but thankfully it’s over now. I have regained most of my independence. I can wash,dress and feed myself, deal with my own meds and, best of all go to the loo whenever I want! I have a cleaner for the housework but that’s one thing I am more than happy to give up.I can’t walk but manage to get around with a mobility scooter outside and an electric wheelchair indoors (albeit I’ve trashed my flat learning to use the latter!) And yesterday I used my moby to attend the inaugural meeting of my surgery’s Patient Participation Group so perhaps I will be able to put my experiences to some use. Even if I can’t at least it made me feel like a grown up again instead of the helpless baby I was six months ago!