Beginning to suspect MS

I’m reaching out here in an attempt to get some clarity and support. I have been experiencing lots of different symptoms for quite some time, the most recent of which have been serious constipation and memory loss. I have been to my GP for the constipation and abdominal pains, suspecting ovarian cysts and just today had an ultrasound. Frustratingly, they didn’t find anything. I have had a partial hysterectomy (and been through the emotional mill over the past four years, including a bout of depression and anxiety). Something recently nudged me into looking at MS. I have read lists of symptoms and found that many apply to me. I find that the most difficult thing is that most of them are very transitory and I don’t know how to approach my GP.

My main concerns currently are the bowel issues, urgency in urinating (most days - I did well holding in 1L of water for nearly 2 hours today, when my appointment ran 40 mins late!). I am also experiencing frequent memory lapses. I have a 3 year old daughter and I’ve been joking about ‘mumnesia’ since she was born…but now it seems to be getting worse. My hubby often complains that I’m not listening to him when I had honestly been trying to and then promptly forgetting what he said. I am also stumbling over words when I speak, getting sounds or words mixed up, nearly daily. I used to be very fluent. I am also often dizzy and have mentioned this several times to my GP. (The response after some investigation was ‘Can you live with it?’. Well, yes, it’s not like the world is spinning, it’s just a bit wobbly. Concerning though.

I have a recurrent prickling sensation in my back, under and around the left shoulder blade. I also get random pricking pains, twitches and tingling around my body, as well as a recurring tingling sensation of my right scalp (it’s happening right now). My calves are prone to tenderness and the left one has been very crampy. My daughter stands on them occassionally, when I kneel and it’s agony. I’m good at spelling but my typing is getting worse.

Then there’s little things like the random pains, twitches, feeling like someone is poking my upper arm. I get migraines now after having given birth (emergency c-section followed by emergency hysterectomy). Before I was released, I also had one episode of split vision. They examined me for stroke but put it down to migraine. I’m now wondering if it was MS related. I get a little sideways twitch in my eyes now and again (and have done for years). I also see tiny pinprick light flashes and have a ‘floater’ in my right eye (which is also where I get the migraines). I’ve a little tremor in my ring fingers (mostly the right) and get occassional unexplained pins and needles. My right big toe is numb on the inside edge and has been for years.

So what do I do with all this information? Do I tell my GP the lot and go right ahead and ask for an MRI? I’m reluctant to. I don’t wish to come across as a hypochondriac but neither do I wish this to be dismissed due to my history of depression and anxiety. I really want answers. I need to know what is causing my abdominal pains (twitches, aches, that are so transitory but repetitious). Something is not quite right. The way all this matches to MS symptoms is oddly reassuring - as much as I would rather not have a positive diagnosis, if it does turn out to be correct, I’d feel some relief. Right now, I’m in ‘limboland’. Help?!

Hi Reiki, and welcome to the site…

Some of the symptoms you describe are MS-like, but there are a whole bunch of conditions that have similar symptoms. Normally a GP would do some blood testing to eliminate some of the other conditions first. Some are as simple as vitamin deficiency (esp vitamins D and B12) and are easily treated. Thyroid problems is another that can be found in the blood test and can have similar symptoms.

So before MRI you would normally have this blood work done.

I would think the best way to go with this would be to make a list of your symptoms and go to your GP and explain how worried you are. Don’t make the list too long… so don’t put on the small random pains and twitiches… but put your main symptoms… dizziness, memory loss, bowel and bladder, tingling, numbness etc. I would expect him/her to then order blood test.

If you say you have been on the internet and believe your symptoms are like MS the GP is very likely to put this down to health anxiety… so right now I would avoid saying that if I were you. GP’s are never happy about people going on the internet and coming up with a diagnosis, so best not to tell him/her.

Just take your list and say that you are concerned that something is wrong, especially as nothing showed up on the ultrasound. Hopefully the doctor will then order the blood tests. If he/she doesn’t, then at this point maybe you should say you would like blood tests. Is there someone who could go with you to back up your concerns? That can be a help.

Then wait and see what shows up in the blood tests. As I said, there are a lot of conditions that have similar symptoms and these need to be eliminated before you would be sent for an MRI.

I’m sorry you’ve had, and continue to have, such a rough time. Very difficult for you and scary. I really hope you get some answers soon.

Take care,

Pat x

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Thankyou for your advice, Pat. My thyroid was checked a little while ago and found to be fine. As for taking someone with me…I don’t wish to worry anyone unnecessarily. Perhaps if I had just cause to see the GP a second time after having presented my list of concerns…

I’ll be making a follow up appointment soon. Thanks for your support, I really appreciate it.

Reikiblossom

Hi, I think PatB has covered your questions quite well. Don`t jump to thinking this is MS…it could be one of a huge number of other things. Do see your GP and see what happens then.

If he./she thinks there is a neurological problem, you should be referred to a neuro.

So sorry to hear you had to have an emergency c section and then a hysterectomy. These things alone can take some recovering from.

Look after yourself, yeh?

luv POllx

Hello, and welcome

Great advice from Pat, as always - I do hope you will follow it.

One other thing - migraine can cause all sorts of neurological symptoms. If I were you, I would push for preventative meds and then see what’s left once they kick in. Of course, the migraines could be a symptom of something else instead of a separate condition, so seeing a neuro who specialises in headache could be a good move.

Good luck.

Karen x

Thankyou for your thoughtful replies. I’ve made an appointment but in order to see the same doctor as before, I have to wait almost three weeks. Perhaps this will give me time to be clear on what I need to say (and what to avoid saying!), to calm myself and also to keep listening to my body carefully. I have started to write down any symptoms that really bother me, though I won’t take this along to the appointment. It may prove useful in the future though.

I think the thing that bothers me most at the moment is the memory loss. It makes me feel less intelligent than I know I (still) am. It causes friction in my relationship, too. Another odd thing that I’ve experienced for a while now is having trouble remembering the timeline of events. I’m very much a live in the now person anyway, but occassionally when I need to recall a past event, though I can visually remember it, I can’t remember when it happened. Some things that occurred months ago are still fresh and clear yet others of just a few days ago can be vague, too. I have developed the good habit of writing anything like appointments and meetings down on my calendar. It feels like my brain’s filing system is out of order!

Aside from the cognitive confusion, I am being distracted daily by twitches, odd little stabbing pains, tingling and stiff muscles. I practice Reiki (Japanese energy therapy) and treat myself when I can. It helps keep me fairly calm and relaxes me to a point, but I can’t ignore this inner feeling which tells me that something is out of balance and needs addressing. I spoke briefly to a friend about my concerns - it is so important to be able to talk about things with someone who will take what you say in a balanced way, who can offer support. I really don’t like this waiting though. I’m sure many feel exactly the same. I’m worried that my symptoms might be too subtle for any significant testing to take place. I know that worrying does not help. I’m fed up of this dizziness and these odd feelings. If I had a clear diagnosis, then I could have a clear strategy of how to deal with them. Until then, my only strategy is to help myself where I can by making sure I look after myself, balance my life as best I can, pay attention to my body without becoming obsessed with recording every little odd sensation and to talk it out when needed. So thankyou for providing this space and thankyou for reading. I’ll navigate my way through this as best I can…and I’m not afraid to ask for help!

Wishing you all as much happiness, health and wealth as you can take!!!

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Finally had my DR appointment today. I took my list of concerns and she checked my eyes, ears, balance, reflexes and blood pressure. Still getting odd aches in my abdomen and memory still bad. Tripping over my words often, too. She said she wasn’t concerned and couldn’t find any neurological signs but not dismissing them either, so I was advised to write any concerns down and come back in if things changed.

Now I wait, I suppose.

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It’s a year later and I have kept having the same periodic symptoms, plus a re-occuring back pain/twinge/tingle, a new shotting pain sensation from the back of my head to my left cheek and I’ve noticed that all these little symptoms get worse when I’m hot, especially the dizziness, vertigo and twitches. I tend to feel generally wobbly. So, I’m going to make another appointment…just psyching myself up for it (I keep mis-typing as I’m writing this.) Do I tell my GP that I’m concerned about MS or nit ? Nit. Not. (See what I mean?) I’m mainly concerned because I’m a mum and alone with my daughter for much of the time, as my hubby works long hours, so these episodes of dizziness are what is worrying me the most. Fatigue kicks in hard sometimes too and I haven’t necessarily been very active beforehand. So I’m reaching out here again. I think I’m pretty sure in myself that this is MS (I’ve even dowsed it on several occassions…I take from that that at least I believe these symptoms to be MS). I’m almost hoping for more severe symptoms just to get some proof…so I can do something positive about it. I’d really appreciate your comments, thankyou.

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I’ve just phoned the helpline and will make an appointment, take my symptom diary and ask to be referred to a neurologist. Feels like the right thing to do although I’m quite nervous about doing it. Feel like I need to chat a lot about this!

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Hello Reikiblossom x

Welcome back is not really what I want to say under the circumstances!! But it’s good to hear from you anyway - it’s mad we are all in the same or similar positions a year down the line isn’t it!!

I think you are doing the right thing by going back down the same road - you have given it enough time for things to resolve themselves! xxxjenxxx

Thanks Jen, I know what you mean but I do appreciate the ‘welcome back’! Yes, I’ve given things plenty of time and the fact that I’m still getting the same niggly symptoms (plus a few new ones) gives me enough proof - for myself - that I need to take further action and deserve to be taken seriously. Having this forum as a touchstone is really helpful, too. It would be too easy to dismiss all these annoying symptoms separately but my gut instinct tells me they are all connected and that I need to explore this further. Thanks for all your support, folks :slight_smile:

I tried to make an appointment but my GP is away and booked solid for ages. Now what do I do?

Is there another GP at the practice you could see? I changed tack like this and it eventually led to my diagnosis. A fresh eye and all that. Sam x

Hi Sam, yes, there are several and the one I previously saw isn’t actually the one I’m technically registered with but I felt comfortable with her and felt that she was really listening to me and taking me seriously. I’m worried that if I see another GP I might not be able to express my concerns as easily. Sounds a bit silly but I suppose I’m worried about seeming over anxious. Because I don’t know how serious this is, I’ve no idea how to prioritise it. Should I wait to see the doctor that I trust or do my symptoms need attention asap. Just for the record, at the moment I am experiencing: dizziness, sensitivity to heat, poor memory, losing or mixing up words (including making lots of ‘smelling pistakes’ whilst typing :wink: shooting pain sensations in my arms, legs, on my scalp and rarely across to my face, a repetitive tingling or stabbing sensation in my upper back, sluggish bowels with occassional pain in the abdomen, fatigue, involuntary eye movement, tinnitus and a degree of numbness in my big toes. Save for the latter, the fatigue and dizziness, everything else is quite fleeting and don’t occur necessarily at the same time. Taken separately these things are mainly irritating sensations that are fairly easy to ignore (again, except the fatigue and dizziness) but together they are quite honestly a bit scary. But just how serious is this? Do I rush to the GP? Who else has been through something similar?

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Hi Reiki!

Once or twice in the past when relapsing I got Acephalgic Migraines - possibly Hemiplegic as my toungue, face & whole right side often goes tingly then numb x

My aura lasts exactly 30 mins - quite a spectacular visual display I must say! - the numbness can take longer but no more than a day - then I feel totally washed out and odd for up to a week no longer xxx

No headache whatsoever!

I saw the MS guy a month or so ago and asked him if my brain lesions could be caused by these - he said no - probably the other way round! He said that the lesions associated with true migraines present in a certain way x

What were yours like? Do you still get them? xxxjenxxx

Hi Jen, well I didn’t get migraines at all until late pregnancy. My mum and brother both get pretty severe ones that they call ‘sick headaches’ that really put them out of action. My first was a painless aura - just a pretty zigzag pattern floating in my vision. I got another the day before I was due to come home from hospital after giving birth through emergency c-section and then an emergency hysterectomy due to post natal haemorrage…so I was still drugged up and didn’t notice any pain. BUT my vision split horizontally, though people couldn’t tell by looking at my eyes. I had the aura and couldn’t walk unless I closed one eye because it was so disorienting. They checked me over twice for signs of a stroke but eventually put it down to migraine. I can’t help but wonder now if it wasn’t an MS relapse as I’ve been experiencing some symptoms for years. I’ve had maybe a couple of painful migraines since then, with pain always behind my right eye and around to the base of my neck.I get odd shooting pain or pricking sensations on my scalp (feels like I’ve got needles poking my brain!) I’ve also had times with no pain but that eyelid goes noticeably puffy and a bit droopy. I haven’t had what I’d call a migraine in a while. Tension or sinus headache, perhaps. My head doesn’t feel right. It’s hard to explain. I’ve had two wonderful short holidays (one Live Roleplay weekend, one family camping trip) and have been fine during but totally exhausted afterwards. I drink loads, that seems to alleviate the headaches but too much computer or smart phone use does not help. The weather affects my head too…pressure like before a storm or very hot weather tend to encourage headaches or general ‘fuzziness’.

I’ve added an avatar: my daughter’s hand showing me a buttercup - that reminds me to look on the bright side and also to be strong in myself.The colour yellow relates to the solar plexus, in holistic thought, which is all about self-worth and willpower. Very fitting, I thought. I still don’t have an answer to my question: do I wait to see the GP I trust (at which point these current symptoms may well have subdued) or do I book one as soon as I can with another GP? I need your thoughts on this so I can decide. I’m taking my daughter in for her pre-primary school booster on Monday and that seems like a good time to book with another GP if I’m going to…help me to decide please!

Hi I personally waited to see the GP I trusted who was lovely and very concerned about my symptoms however when I went to see neuro they all got dismissed as anxiety. I’m now waiting to see a different neuro who I’ve seen in the past for migraine and trust. Guess my thought process there wasI wwaited 4 weeks to see gp I liked to get dismissive neuro so need I have bothered with my initial wait could have seen any gp A

Hi Arwen, thanks for your reply. I’ve decided to make an appointment to see any GP as soon as possible. From another forum member’s suggestion, I’ve attempted to condense my symptom diary into a short overview - it’s still not that short but now I can at least start by going into my main concerns and know better which symptoms are frequent and re-occurring and roughly how long they last. It does seem that multiple things happen in a short space of time and then gradually fade (such as feeling dizzy) but keep on coming back. Other things, such as fatigue, poor memory and mixing up words or the beginning sounds of words seem to be almost daily occurrences. I’m so glad of this forum and the lovely, understanding people here. I have spoken to my hubby and brother about my concerns but it’s not quite the same as speaking to others going through similar experiences. Anyway, I’ll keep you posted!

Just had my GP appointment. I took an abbreviated version of my symptom diary - which he has kept to put with my records. I now have appointments for a blood test and a follow up appointment with that same GP. I did ask to see a neurologist but he went through various different possibilities, mentioning anxiety several times but did say it may come to seeing a neuro but he’s checking everything thoroughly. So on the one hand I’m relieved to be taking further action, on the other I’m well and truly in limbo land now!