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Advice please, could this be MS?

Last Saturday, I started getting pins and needles in my left hand and arm. This continues for the next few days and if anything was worsening. By Tuesday morning, my left foot was affected too and I called 111 for advice. After going through their checklist, they advised me to call an ambulance, which I was not prepared to do since I had just driven home from work and felt otherwise ok. They were insistent however and agreed that I could just get someone to take me to AandE.

Although I felt it was a waste of time, I did attend A and E after seeing the triage nurse I was immediately taken round to ‘Majors’, at which point I began to feel very nervous, as I had thought I had a trapped nerve. (I think at this point, the medical team were worried about stroke, which was quickly ruled out). As part of my assesment I had a full set of bloods taken and my blood sugar was tested (result:normal). After examination by a doctor, she called a colleage in to examine me; it became apparent that my left side was not feeling sensation as it should but an explanation was not immediately obvious. I was given a chest x-ray, after which I was told there was nothing more that could be done in A and E, I would need to see my GP by the end of the week if I still had symptoms as he wld need to refer me to have some nerve conduction tests and possibly an MRI.

I saw my GP yesterday and as we talked about my symptoms and some others that I had reported previously such as problems with swallowing, needing to urinate often (I had been concerned about diabetes at the time which was unfounded), other incidences of numbness in my feet, etc, he agreed that I should be referred to a neurologist and also requested that I have another set of blood tests, after which I will need to re-attend the surgery.

I voiced a concern that MS might be the cause of the tingling but he told me that it was very rare. This was not very re-assuring for me though as our family seems to specialise in rare medical conditions!

The tingling in my arm and hand is still present and I am also experiencing it on and off in my feet. I am also incredibly tired, despite making an effort to get lots of rest. Because I’m concerned about MS I’m going over every possible symptom that might be linked, for example I have been unusually forgetful lately.

I feel as though I am in limbo until my referral comes through and would really appreciate any advice ayone can give me?

Thanks for reading x

It may be B12 deficiency??? Did you get your B12 levels che ked??

The GP did mention this and I believe it was on the list of blood tests. Having read about this I can’t see that I’m in an at risk group but I’ll just have to wait until next week to find out. Out of interest, if I was experiencing an MS attack, would the pins and needles get worse or stay the same and how long might it last?

I thnk the GP did mention this as a possible cause and I’m pretty sure it was on the list of things to be checked. I hope it’s not that though, because it would mean that the damage to my nerves was permanent. I’m still hoping the pins and needles will go away on their own.

If I was indeed suffering from an attack of MS, how long do they usually last, or is there no usually?

I dont know tbh as Im ‘watching & waiting’ atm with my neuro…I havent yet been definitely diagnosed. My b12 was tested and it was actually higher than the normal range but neuro didnt explain cause or anything. My numbness etc be’s on and off all day…some times worse than others times. Other people may be different though…

I’m now on day eight of the tingling and numbness in my left side and am still experiencing weird sensations on and off on my right, especially the top of my foot.

Really worried that this might be a permanent thing now. How long do neurology referrals take?

I have tingling like you get just before you get full-blown pins and needles in my right arm. It’s been there just over 2 years and looks pretty permanent. I have it much more mildly in my left hand and it comes and goes in my right foot; I wouldn’t be surprised if it becomes permanent there too at some point. I’ve got PPMS so I don’t get the relapses and remissions that many people with MS have.

As to how long neurology referrals take, both mine were done under the “choose and book” system and in both cases my GP’s instruction letter to me was done the day after I saw him (I saw him in evening clinic both times), and then it was a couple of months from me going into the system to me seeing the neuro.

Good luck.

Thanks for the replies everyone, it’s very kind of you. I saw the GP again today and all my blood results were normal, including vitamin B12. He said that he really isn’t sure what the cause of the tingling is, which is why he’s although referred me to neurology but he admitted that he is concerned that MS could be behind it. He said that unfortunately I will just have to wait for the appointment to come through.

So I suppose its just a waiting game now, hoping that the problem will magically resolve itself!

I have had various MS type symptoms which started about 10 years ago when I started just falling over all the time. This gradually progressed to pins and needles in feet and hands (and sometimes on my scalp) but after at least half a dozen scans and a lumbar puncture there were no signs of MS. B12 levels were tested and are normal. Then I developed stiff (spastic) legs which is quite painful at times and was given Pregabalin which does help.

I had three days of tests at the National Nuerological Hospital in London but nothing showed nothing apart from a very low spinal cord. They decided that perhaps there was spinal cord damage from wear and tear with it bein so low. I also have clonus which is a really weird feeling where my feet jump madly, mostly when I’m in bed at night.

Finally they said that I have Spastic Paraperesis which could possibly but probably not hereditary. The strange thing in all this is that my symptoms come and go just like lapsing/remitting MS, which they don’t have an answer for.

It’s not that I want to have MS but I’m not that happy with being diagnosed with Spastic Paraperesis feels like a non-diagnosis as it’s all a bit vague. I hope it doesn’t take you as long to get your diagnosis.

I am still experiencing the tingling sensations. Some days it isn’t too bad and I almost forget about it, but then it comes back and at times is worse than others.

My ‘urgent’ neurology appoitment has been booked for October 6th and I am debating whether to pay for a private consultation as I’m due to leave the country for an extended period on the 15th of October.

I had a good chat with a lady I know who has MS and she said that a neurologist probably won’t refer me for an MRI unless I’d had more than one episode.

For now I’m going to take the ostrich approach and enjoy the health I do have.

MS is very rare, as the GP says. Most GPs only see one or two cases in a career, I have heard.

I am sorry that you feel that are in limbo; it isn’t a nice place to be. There isn’t much for it but to try to stay calm and pace yourself emotionally for what might be a longish process of finding out what ails. Don’t forget that most of the things - including MS - that the medics are methodically excluding through this long process are things that you haven’t got.

And don’t worry about feeling that you find yourself retro-drafting life to fit an MS-shaped charge-sheet. That’s just normal! Try not to obsess about it, but don’t beat yourself up if you still do it a bit. It is tough, this limbo. Try not to be too hard on yourself as you negotiate your way through.

Alison

That’s what I did (I was covered through the private health scheme at work, but would have paid up anyway). Particularly if you are going away, you might well want to get hte ball rolling sooner rather than later.

Alison

Hi Libby the symptoms you are describing are similar to mine.

I also feel like millions of insects crawling all over me I am waiting to start tests hope this helps my Doctor suspects ms but I have lots of other symptoms if you want to chat send me a message we can support each other

Thankyou everyone for your comments, so nice to know that people are going through the same thing as me with the numbness, skin sensation etc and also in limbo land with no diagnosis. Good to know im not the only weirdo around here but part of a group of lovable people with equally strange bodies :wink: …at least we’re interesting!

Sorry, I realise I hadn’t posted that I was sent for an MRI ahead of my neurology appointment today and I already knew that it had come back clear.

I met the neurologist who was brilliant. The appointment was not rushed and everything was explained very clearly.

I have been diagnosed with Clinically Isolated Syndrome but the doctor was keen to stress that as my MRI was clear I am at very low risk of developing MS.

He explained that the problem was in my neck area, which I took to mean the demyelination which caused my tingling, which has now pretty much cleared up. He said that stress can bring on these kinds of attacks where the immune system becomes unbalanced and the body can harm itself.

I was told that having evoked potentials tested wouldn’t really make any difference to my risk factor, and similarly if I had a lumbar puncture there would not be much that could be done for me even if it came back positive. He seemed to be saying that it is important to note this episode incase I have any further problems, but the chances are that I will not.

Having already decided myself to put off worrying unless there was something definite to worry about this does fit in with my thinking. I suppose I was really hoping that the cause of the tingling would be put down to something else entirely and not that I have inched a little way along a road that possibly leads to an MS diagnosis.

The doctor did want to send me for a further MRI as the last one didn’t actually show the part of my neck where he thinks the damage was/is, but he said that this was to rule out any abnormalities in my discs and that it was really just to dot the i’s and cross the t’s. I explained that I am due to go away soon and he said it wouldn’t be worth hanging around for the MRI so not to bother with it.

I just wanted to say thanks to the forum members, both those who posted and those whose posts I read for helping me to make sense of the whole thing and to realise that life is what you make of it, whatever cards you are dealt.

I wish you all well xx

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hi new to site but have a lot of symptoms similar to those already mentioned including blurred vision and pain in left eye constant headaches and the dreaded pins and needles went to doctor who did blood tests which showed folic acid anemia. have been taking folic acid tablets which do nothing for my symptoms ( been on them 4 months ) I’m now thinking it may be M S but not sure how to approach my doctor about being tested any help would be greatly appreciated!

Hi.

Im about 18months ago I slipped some discs in the base of my spine, so I was told.

I’m now having mobility problems which effect prominently my left leg leg but my right knee is painful at times to move.

I have numbness in my feet and have a strange sensation in both feet and legs.

I have had few falls over the past couple of months and am now walking with a crutch.

During the past 18months my memory and focus has become really bad and I often loose track of conversation or TV programs. This was never a problem before.

Lately I have been attending cbt due to my high levels of anxiety which again I have never had before.

Can anyone relate to my symptoms and does it sound like MS. I am 34 and have had to leave my job, which i loved, due to whatever is going on with me.

Thanks so much for taking the time to read.

Joanne xx

HI new to the group,

i was diagnosed with arthritis in both my hands in late 1998, i couldnt grip well pain in hands. i adapted my life and life went on.i believe as the arthritis comes and goes this could actually have been miss diagnosed.

i have always suffered migraines, eye strain etc, i also kept going to drs because when there is background noise i cant concentrate on the conversation at hand ) hearing check clear, ( drs had no explanation for hearing).I have always been active, with tiredness bouts being intermittent (just thought id over done it), my speech is sometimes lazy at the end of each word, (thought this could be tiredness or excitement), then this year my hands were injured tendon and ligament damage. whilst recovering from this i experienced pins and needles mainly in the left but it affected both hands and arms. the Dr sent me for carpol tummel/nerve damage test which this test came back clear. I went back to Dr later as the pins and needles turned to a heavy feeling (i still get pins and needles but then it turns to a heavy/dead feeling) in both arms and on occassions my legs, the Dr did blood tests and check for low iron, b12, diabetes all clear, the Dr has now suggested MS, so i have to wait for a scan date,

i wondered if any one could give me help in regards to the heavy feeling of my limbs as its not always pins and needles feeling.

Hi can anyone shed any light on things for me. For the last at least five years things have gradually got worse. My back is extremely painful to a point I can’t walk, sit or stand. When I am able to walk in lose my balance continually. My legs go numb and it feels like they are lead . My vision has worsened and my optician has referred me to the hospital. My memory is awful and I’m very tearful. I have had depression and have blamed this for everything but things are getting worse. I’m at my gp tomorrow so will try and get her to listen.

I’m now six months into a nine - month travel adventure but wanted to post because lately I have been experiencing a new symptom and wondered if it was significant?

On two or there occasions my left arm has started spasming quite dramatically whilst I am driving. It jerks up and down at a 90 degree angle and even if I try and hold it still it twitches. It only seems to occur whilst driving (an infrequent necessity at present) but in light of my CIS diagnosis do you think I need to see my gp or neuro in the near future or will it wait until I return home in August?

Thanks for reading x