Starting investigations

New diagnosis and before diagnosis
1

Hi everyone

I posted a question here last week, and had some really useful messages in reply. I now have my first neurology appointment booked in, so thought I’d post my story so far here, and update or ask questions as I go along. For info, I’m a 36 year old female with 3 children.

A neurology referral was recommended a few weeks a go, as I have a collection of symptoms that I don’t think can be ignored, and blood tests have now ruled out any deficiencies as being the cause of my problems.

My current symptoms include:

  • strange sensations down my right side, such as some numbness, heaviness, tingling and crawling feelings in right arm and right leg, tightness around upper arm and thigh, shooting pains down arm, clumsiness in right hand, tightness and pain in right shoulder and around ribs, muscle twitching.

  • problems with memory, concentration and thinking, which is now really affecting my job as I have a job that requires a lot of thinking through problems logically. My husband also commented recently that I do seem to be forgetting simple things a lot recently.

  • headaches and blurry right eye. This started about 3 weeks a go, and the headache has gone but my right eye is still blurry to varying degrees. I noticed it was particularly bad again yesterday after an exercise class.

  • constipation, feeling like I don’t always empty bladder completely, some extreme heart rate issues (I recently saw a cardiologist and he said I have all the signs of POTS, which means my heart rate rises excessively and I get dizzy, sweaty and breathless just from standing up).

Although this has been at its worst for the last month or so, I’ve had issues for at least 4 years when I look back. I was hospitalised with a bad throat infection 4 years a go, and after that I had a few months where I was constantly back at the GP about fatigue, tingling, pain around right side of face and jaw. At the time I had a nerve conduction test and saw an ENT but no obvious issues were found. It eventually just got better on its own.

I then woke up one morning 2 years a go with horrible lower back pain and right hip pain, and again ended up feeling constantly tired, cold, had problems with disturbed vision etc. I had an MRI of my spine and pelvis but it didn’t show anything other than minor wear and tear. Again, it eventually just got better in its own, although I do still get the odd niggles with my back and hip.

Then in December last year, I was diagnosed with multiple PEs after going to the GP with right shoulder and rib pain. I now take anticoagulants for life as it was subsequently discovered that I have a gene that makes me more prone to clotting. After the PEs, I struggled with fatigue and general achiness and was found to be low in folate and vitaminD. Despite continuing to take supplements and my levels now being fine, all the symptoms described above have developed or come back over the last couple of months.

Sorry for such a long post, but it’s useful for me to write it all down in once place, and may help others to read in the future as I update my progress.

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2

I have a question if anyone could help.

Can altered sensations related to MS be made worse by position, muscular fatigue or other triggers, or do the sensations/numbness tend to be more constant or spontaneous?

My right arm and right leg always feel heavy and achy, sometimes with shooting pains and tingling, but my leg is particular bad today and it seemed to start when I’d been sat in a reclined position for a few minutes and my right bum cheek and foot went numb. It eased when I moved around but is still worse than normal. I had a similar problem with my arm after a cardio class yesterday.

3

for me, stress is the trigger.

very stressed recently and my MS has gone mental.

4

Things can definitely trigger them. For me tipping my head forward, sunshine but weirdly no other form of heat sets off head tingling. Eyes are awful - painful and occasionally altered colours when tired.
I think if it’s continuous that’s when it’s indicative of a relapse, but day to day fluctuations related to stress/heat/fatigue are fairly common from what I understand so far x

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Hi, the thing about MS is that it isnt always constant.

Pains, feelings, altered sensations come and go.

Fatigue is a big factor, but not for everyone.

I would think change of position would have an effect on a certain sensation.

My back pain often improves when I use better support or change position.

My nerve pain is kept at bay with amitriptyline.

Boudsx

6

Thank you for all the replies. Somehow I’d turned off notifications for this post so have only just seen the comments.

It seems like MS symptoms are so varied that pretty much anything could be related, but also may not be, so I’m just keeping a log of everything to mention at my appointment. Only 10 days to go now and I’m looking forward to it in a strange way, but also slightly nervous that I just won’t end up covering what I want to. If I come away with him wanting to investigate further, then I think that’ll be a good outcome.

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I had my appointment this evening. I’m glad I read other posts warning not to expect too much from a first appointment.

he took a bit of history and then did some neurological examinations (reflexes, muscle strength, checking I could feel pain prick and vibrations etc). The examination was all normal so he said he’s sure there’s nothing neurological going on and that all my symptoms are related to migraines (he called it a typical migraine, I think, because it’s not often accompanied by head pain). He has requested head and C-spine MRI, and a nerve conduction test, but is confident that these will be normal and said it’s to put my mind at rest.

I should feel reassured but I don’t know if I should still be prepared in case someone with MS or other neurological issues could have a normal examination and the MRI still show something up.

8

Hiya, I don’t wish to add to any existing worries you have, but after my first neuro exam I was told it was not MS, it was a disc issue in my back. So after my MRI’s to be told it was MS came as a massive shock. Fingers crossed you are given the all clear.

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Thank you for your reply, and please don’t worry about adding to the worries. This is why I made the post, as I didn’t feel completely reassured by what he said, and it seems I’m right to still have an open mind about what the MRI may show.

In my case, it seems that migraine will be the diagnosis if other things can be ruled out, so I just want to be sure he properly considers and rules out MS. My head and c-spine MRI is now booked in for next month, so even though he says he’s sure this will be clear and is only to put my own mind at ease, hopefully this would show up any other issues if there are any.

10

Good luck with the tests.

Boudsx

11

Hi,

I had to comment as I also had my first neuro yesterday. I went through similar tests to those you mentioned, as was quite shocked to find out he expected me to hear a tuning fork when it was placed on the centre of my forehead! How weird that was! He kept repeating this test over and over actually, as though it would change. I had had my MRI prior to the appointment, and found it so beneficial. The MRI was clear for me that it has to be MS, with 3 lesions in separate areas of my brain, however he did say the neuro exam backed up the results, so guess I ‘failed’ so to speak.

One thing I have seen in the short time I have been on here is that everyone’s MS is different, and that even though symptoms can be similar to others there are no 2 identically presenting cases. Your neuro could be 100% right in that it is atypical migraines, however like you I would think ‘there is a chance of MS’ to be prepared until the MRI comes back to say otherwise.

I hope everything goes well for you, and sorry that I didn’t really have much to say to help

12

Thank you for your message. I hope you’re feeling ok about what now sounds like a fairly definite diagnosis? Can I ask how you ended up having an MRI before going to see the neurologist?

I had the thing with the tuning fork too. He just asked if I could feel the vibrations against my forehead and then on both hands. Could you not feel it at all? The only thing from the examination that I noticed was that the pin prick didn’t feel as sharp on my right hand, but he seemed happy that I could still feel it.

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I think diagnosis can be difficult, if there are several issues. For me anyway, and earlier MRI scan of my neck has shown I have herniated discs. Orthopedics passed me onto neurosurgery. Unfortunately neurosurgeon does not think that while the issue with my cervical discs would explain the weak right hand / numb thumb etc, it would not explain the weakness in my legs / difficulty walking, so I’m now passed onto neurology.

A blood test a couple of months ago showed that I had low folate levels in my blood. Apparently this can cause neurological issues similar to MS, however despite being on the folic acid for 6 weeks, I can’t say I’ve noticed any improvement. But perhaps it’s too early to tell.

I think the key thing about getting a diagnosis, whether it is MS or something else, is just to be patient, particularly if you get passed between departments or between counties, my Neurosurgeon was based in NHS Edinburgh and Lothians, whereas my orthopedic consultant (original diagnosis was nerve impingement caused by frozen shoulder) in NHS Fife.

Apparently I’m a complicated case…

14

Oh dear, you can see why it takes years for some people to get a diagnosis. I’m sorry to hear that you’re getting passed around with no answers as yet.

Ive also had low folate a couple of times, so that halted any further investigation of symptoms those times. My folate levels have not been stable for a year, but then my vitamin D was found to be low back in May, so everything was then attributed to that. My vitamin D is now fine but my symptoms have worsened since August, so the GP then said it may be all be side effects of anticoagulants that I’ve been taking since having pulmonary embolisms last December, and suggested swapping my medication. At that point, I basically said no way, you’re not changing my medication without me consulting my haematologist. My haematologist said none of my symptoms are known side effects of the medication, and he was the one that convinced the GP to refer me to neurology.

I originally thought my arm numbness was due to a trapped nerve or similar. My PEs were on the same side and caused a lot of tenderness around my diaphragm and referred pain into shoulder, so it didn’t seem too odd at first to be getting some strange sensations in my arm too. But I’ve had a chest CT to confirm the clots are gone and there is no residual damage, yet my arm is getting worse and my leg is bad too.

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Thanks Bouds. I’ll come back and keep this thread updated as and when I know more.

16

I am a little numb about it still, but it is sinking in. I originally went to the opthalmologist 8 years ago with optic neuritis (quite severe). They sent me for an MRI immediately which came back clear. Back in February I experienced optic neuritis again, only not quite as bad vision-wise, but along with other symptoms. I was referred back to the opthalmologist who ordered another MRI querying MS, as he believed it to be the most common cause of optic neuritis. He also made a neurology referral at the same time. Then Covid happened and everything got delayed, but back at the end of August an MRI slot became available. Within 3 days I had another Opthalmologist appt sent thru to happen within 3 weeks (cue me thinking the worst) I then got a neurology appointment through, so they were clearly waiting for the results before booking me in. Opthalmologist explained that there were lesions, and monitored my vision, and I am going back in around 3 months.

Re: the tuning fork he wanted me to actually hear it rather than feel it, although I couldn’t feel the vibrations after. The majority of the pin prick tests felt weaker on one side for me, and when scraped along the soles of my feet, one set of toes reacted downwards, whilst the other reacted upwards. FWIW my pupils do not contract with light either, they initially contract and then dilate.

17

I’m feeling really sorry for myself today, so just thought I’d come on here to update my story and see if anyone has any words of wisdom while I’m waiting for tests etc.

I booked an optician’s appointment for yesterday, just to check if it’s just my eyesight that’s deteriorated and if that could be triggering migraines. The optician said straight away that my prescription had changed (since 7 months a go) but could also see that I was constantly adjusting my focus when trying to read the letters. I described to her that when looking at a single letter on the display, it was constantly going in and out of focus, so I could eventually work out what most letters were over a few seconds, but it was only a odd split second during that time where it was clear enough to read. When reading a row of letters I didn’t feel like my eyes were just reading from left to right, but more like I was scanning back and too until I could work them out, and that I’ve been finding it really hard with work to actually read and comprehend things because just the reading part is hard work. She said that if I wasn’t already in the process of having tests with a neurologist, she would have referred me to a neuro-ophthalmologist as a result of my examination, and was pleased to hear that I already have an MRI scan booked in. She said it’s really important though that I tell the neurologist about the focus issues, as these don’t fit with typical migraine symptoms that the neurologist believes I’m suffering with. I don’t know if these focus issues could be caused my MS, and if the scans show no signs of MS, then I don’t know what else could be causing it. It’s just made me feel anxious in advance of the tests and follow up, as I don’t feel reassured that this is just migraines.

I’m also feeling extremely tired and the whole right side of my face feels so strange that it’s just getting me down today. I had a nap yesterday afternoon and this afternoon, slept for 12 hours last night, and still feel tired now. My face feels like someone is firmly putting pressure on it with the palm of their hand around my temple and upper jaw, and it feels like there is pressure behind my ear. The muscles in that side of my face also keep twitching and I feel a bit light headed. I wouldn’t describe it as pain, but just so persistent that it’s as annoying as a headache. The neurologist has told me to try not to take painkillers as these can make migraines worse over time. I rarely take them anyway but I really wish there was something I could take to ease this feeling in my face.

18

Waiting for tests is just the worst, most horrible feeling I can totally relate, as can most people on here. I don’t have any answers for you of course, but the answers will come soon enough when your tests are carried out. Most people who suspect MS don’t end up having it so hold on to that. There’s no reason at this point to assume you do. But know that you’re not alone, so many on here, myself included, know what it’s like to live with horrible symptoms and to have no idea what’s causing them. Lots of love to you - sending a virtual hug x x x

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Just 5 days to go now until my MRI. I know some people have to wait so much longer than I have for appointments and tests, but I’ve still found the waiting hard, so I’m glad the MRI is nearly here. I had another bad headache yesterday and my right eye is still blurry and a bit dark, as well as the ongoing tingling and muscle twitching, so I just want to know if there’s anything to see on the MRI. If not, then I can get started on migraine medication to see if that helps.

I had the nerve conduction tests a few weeks a go and they were absolutely fine, so that rules out peripheral nerve damage as the cause of the tingling etc.