Info eeded

Hi there. I have had a question lingering since 1990. And thought I’d ask here about thoughts on it.

I’ll go back to the start.

Approx mid 1980’s I awoke with an area mid midriff that was numb/ish, it felt like wearing a cloth cover. I’m not a one for going to the doctor, and, over a few months most of the sensation returned. A couple of years later, I awoke to a leg, up to my hip, with the same lack of sensation. Again, I didn’t go to the GP, and again, it gradually gradually came back.

Partly because I didn’t want to worry my mother. But, after she passed away in 1989, and in 1990 it happened again, affecting an arm and feeling it in my neck. (In all these episodes I could have drawn a line around the area of reduced sensation.) I went to the GP. And he referred me to a specialist. By the time of the appointment the feeling had almost fully recovered. He did various tests, no blood test that I remember. He was rather difficult to talk to. Talking to a student he had with him, and ended by telling me that it was just “one of those things”, asked if I intended to have any more pregnancies. As they can aggregate the issue, and that cutting down on animal fats can help. And I started using vegetable fat for cooking from that day.

But that was the last I heard. Until a few years later when I went for a routine smear test, and the practise nurse asked about ​my MS. I said this was the first I’d heard of it and she brushed it off.

thankfully I’ve had no more numbness areas, I do get a tingle/sensation down my legs when I bend my neck forward, and my legs don’t always seem to be on full power, which I’ve always put down to my obesity. But I have often wondered if I could have an underlying MS issue. Even if it is a slow/minor issue. (I rarely go to the GP so haven’t asked about it)

what do you think?

Thanks in advance.

Hi it may be Allodynia? which can be an area of skin which feels a change in sensation or numb. The area can feel very sensitive to touch.

I’ve had it before on my lower thigh during an infection with relapse, it started as numb then changed to ultra sensitive and it helped to wear shorts to keep fabric away from the skin. It can be caused by MS and other conditions including migraine and fibromyalgia.

I’ve also had a few times if I sleep in an odd position the area around my ribs feels numbish when I wake up. I rub the area and it’s gone within an hour our so. I did break a rib in a horse riding accident as a child, so that numbness may be connected to the damaged rib.

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hi appleblossom

are you saying that the first you heard of having ms was through a practice nurse at a smear?

sorry if i have misunderstood because i’m dopey first thing.

however it read like that to me.

if i read it right, then i’m shocked that such a diagnosis could make it onto your medical records without you being told immediately.

please put me out of my misery and let me know.

carole (feeling possibly foolish) x

Hi, so you have not had a formal MS diagnosis given to you but the nurse mentioned MS. That is odd and hope you can get to the bottom of this soon. You could ask to see your medical GP notes. The GP practise manager would assist on this.

Yes that is right. It was never mentioned at the time, but there was something on my records for her to mention it. It was a time before widespread internet, and I went straight to the library, to read up about it, and decided not to mention it to anyone and see if anything else happened.

About 3years ago I broke my ankle and on a visit to the doctor, she also mentioned it being on my record. I again told her that no one had told me about it properly, and I’d not had any further symptoms, again she brushed it off, saying it might be a mistake. Although I didn’t mention the leg tingles. I must add, I’m quite shy and not outspoken enough to have asked more about it at the time.

I want to apologise for the typos in my OP, it was late :slight_smile:

This is exactly what sent me to my GP before my dx.

I had this loss of sensation/numbness around my lower ribs (back) on the right hand side, next day it had travelled a bit higher, next day it was moving round to the left, eventually moved around my rib cage to the front. Went away for a few days then started in right leg. Eventually both legs from hip to calf were affected.

Went to GP who asked if there was a family history of MS. No, none at all. She said she’d refer me to a Neuro, appointment likely to be in four months time, but if it got worse go straight to A&E.

Two days later I went to A&E and was admitted.

Five days, two MRI’s, a LP, and IV steroids later was discharged with RRMS dx.

Hope you get an answer. x

Hi Appleblossom.

It’s certainly possible that you have MS. I worked in Neurophysiology for many years, being involved amongst other things in the diagnosis of MS. When I first started, in the early 70s, no doctor would have dreamt of telling a patient they had MS until they had had several episodes; they waited for it to be ‘multiple’. The likely diagnosis only started to be given to the patient immediately, in my hospital at least, later in the 90s. This was to avoid worrying the patient unnecessarily, as attacks can be years apart. Most people assume immediately that MS is a dreadful disease (which of course it can be,) but for a large number of people it’s not - after all, you may have had it for 30 years by now without (hopefully!) it rendering you bedridden or wheelchair-bound. Sometimes MS only becomes apparent on post-mortem, so obviously it’s possible for it to settle in and make itself comfortable without being noticed at all.

The fact that you have a tingling sensation on bending your head forward is the most telling symptom you have. This may be ‘l’hermitte’s sign’, which is associated with MS. I would suggest seeing your GP and explaining the situation to him. Disease modifying treatment is unlikely to be helpful after 30 years anyway, but there may be other things which could help if you know what you are actually dealing with. Sometimes just having a diagnosis, a name to give how you feel, helps enormously.

I hope you get some answers, x

In the past, it was routine to not tell people they had MS if their symptoms were relatively mild. In the mid 80s, in fact right up to about 2000, there were no drugs therapies available for MS. Only in about 2002 did the ‘risk sharing scheme’ start, when drug companies gave the NHS access to beta-interferons and copaxone at a reduced cost on the understanding that if it worked, the NHS would pay more for it. (Or at least that’s how I understand it!)

I had my first MS ‘episode’ in 1997, was tested (MRI, LP and VEP) given IV steroids, told ‘it’s not MS’ and sent away with follow up appointments with the neurologist. I attended one appointment, then gave up as the symptoms got better and after all, they hadn’t diagnosed anything. (I was a bit of an ignoramus medically in those pre Google days!)

Over the next 5 years I had various relapses, similar to those you describe, numb legs, optic neuritis, the hug, etc. Then in 2002 I had a really bad relapse which sent me back to the GP to get a referral to a neurologist again. This time, I expected the diagnosis to be MS, and I was right. By this time, there were DMDs available - only the three beta interferons plus copaxone, but better than nothing.

I happened to get a copy of the original discharge summary from the first neurologist back in 1997. In the letter he clearly stated that MS wouldn’t be mentioned ‘unless she directly asks’. And this does seem to have been the normal way of it. As there were no DMDs, there wasn’t much point in telling a mostly well person that they have something that may not cause them too much problem.

It may be that you don’t in fact have MS, or that you do and like me, a decision was made not to tell you. Personally, I was a bit peeved when I first discovered that the doctors had known and not told me, but in retrospect I was quite glad I didn’t know. Those 5 years when I had it but didn’t know, were very creative and hard working years. I don’t know if I’d have taken the professional and personal risks I did had I known I had a neurological problem. I just worked through the relapses.

Today of course, it’s a different world. If a person had even suspected MS and weren’t told, it would be 100% the wrong thing to do. But then today there are a huge number of DMDs available.

Sue

I was diagnosed a couple of years ago and went to the occy health dr. She told me that previously some dr’s didn’t tell people if they thought it wasn’t too bad so as not to worry them. I thought it was ridiculous when she told me! Although I can see that if there’s nothing you can do and medicine was approached slightly differently then a dr could feel like there’s no point saying anything.

That might be why you weren’t told but it’s in your notes.

Thanks for the feedback. I can see the point back then not telling people, I think I would have been scared to death, as the only knowledge I had about it then was that my dads first wife had died due to MS, I think it developed after she had their 2 children a year apart, in the mid 1930’s, she passed away when they were around 11 or 12.

One day I’ll get around to asking the doctor about it. In the meantime I’ll keep my fingers crossed that I continue with no further symptoms.

Dear Appleblossom.

Your experiences / symptoms sound identical to my own, prior to my securing a diagnosis of MS. Areas of skin that have a sense of vagueness to them; not so much numb because you can still feel temperature and pressure, but certainly not fully sensitised.

It is unfortunate that your doctor way back when failed to inform you of the probable cause of what you were experiencing. However, one might argue, what would you have done differently had you been told? With little therapy available, no certain prognoses possible, few DMDs, and the risk of the stress caused by receiving such news potentially only making you worse off, perhaps the doctor did you favour?

I admit, i do not share this attitude and i would be royally pissed off if such a diagnosis had not been shared with me.

With this being said, i would strongly recommend that you DO NOT simply cross your fingers and hope that your good fortune persists. It is wise that you cut down on animal fats, but prevailing wisdom would suggest a severe restriction on ALL SATURATED fats irrespective of their source.

Also, as we are not in the 1980’s anymore, we all have access to very effective drugs that can help ‘stack the deck’ of wishful thinking in your favour.

If i were you, i would go to your doctor in order to gain a referral to a neurologist, to acquire an MRI, to gain a confirmed diagnosis of RRMS, to be eligible to receive DMDs.

It is unwise to bury your head in the sand… good luck doesn’t last forever.

All the best!

Similar symptoms to me.

Numb fingers in 1989, went to a neurologist diagnosed trapped nerve - no MRI scanners then!!

Went to Dr in 1998, told lots of other symptoms. She booked me in with a Neurologist who then booked an MRI and lumber puncture. Went to the library (no internet then )to research symptoms, about 10 different ones all pointed to MS.

Scared of enclosed spaces, returned to Dr to get a sedative for the MRI. Told her I suspected MS she agreed and neurologist had written her a letter. After MRI and lumber neurologist conformed benign MS. Now SP MS.

Hope you’re ok Appleblossom.

Jen xx

Hello goldrat

Given that you are now categorised as SPMS, do you think the former diagnosis of ‘benign’ is something we ought to resist being told ourselves?

Benign, to my understanding at least, means do not worry, inactive, harmless, nothing to see here, it is what it shall forever be, DMDs would be a wasted labour…

However with it now developing into the dreaded Progressive variety, might it be more appropriate to consider ‘benign’ to be instead, a very mellow version of RRMS?

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sounds as if your g.p. suspected m.s. and noted that on your records.

Nursed who you have been in contact with have seen your records but are not aware that you haven’t been given a diagnosis of m.s.

You now have a dilemma! - should you bring the issue up with your doctor and consider going on DMD - it seems the sooner these are started the better.

Not sure what situation is re. notifying the DVLA if you’re a driver.

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