new and wondering..are my symptoms ms?

New diagnosis and before diagnosis
1

hello

I’m new to the forum. I am a 29 year old married mother of two. Last year I had a period of a few days where my middle and ring fingers of both hands were numb right on the tips. I didn’t see a GP.

Three weeks ago it happened again but spread to all my fingers apart from my thumbs, particularly middle, ring and little fingers. The soles of my feet and my toes also felt numb yet extremely sensitive (hard to describe!)

In the past three weeks this numb, weird feeling has progressed down my fingers from the tips to reach my palms. The numbness has also spread down my torso from about an inch below my bra line, right down my stomach, into my groin and down the front of my thighs.

I have been experiencing weakness in my legs; they feel heavy.

I feel very tired and lethargic.

However, the worst feeling by far is around my torso. Even though I say it feels numb, it also feels extremely sensitive to clothing and when clothes touch my skin there, it feels like my skin is burning.The unbearable part is feel as though I am being squeezed really tightly in this area (but only at the front of my torso, it doesn’t wrap around). It is so tight at times I feel as though I cannot breathe properly. The only thing that helps, weirdly, is to wrap something around my torso really tightly, or to lie on my front. This pressure seems to help but literally as soon as I release the pressure it is back just as strongly. It is worse when I am lying down on my back, standing up and especially when I am walking. I get some relief lying on my side but can still feel it. This horrid squeezing has been there constantly for over two weeks now.

I have felt a little bit confused recently. Finding it harder to think straight and seem to forget the words for things when ordinarily I am never stuck for words (ask my husband!)

I have been to the gp who ran a full blood test. It all came back clear. He said my vit D level was a bit low so I am on those now. In a month, I am to go back for a blood test and if I feel no better he mentioned a referral to neurology. He said I passed his sensation test. It is weird as the best way I can describe this feeling is numbness but I am not ‘numb’. I just struggle for how to describe it better! It is more like being hyper aware of my fingers, toes, thighs and torso at all times and especially if anything is touching them.

Sorry for the essay. I know it might be premature but my question is does any of this sound like it could be MS?

If so does anyone have any words of advice for how to manage these symptoms?

Thanks for reading and thanks in advance for any advice you may have.

HB x

2

Hi Heinz,

I can relate to some of your symptom - fatigue, numbness in hands and feet, weakness, loss of words but I haven’t experienced what you describe around your torso. Could this be the “MS hug” I’ve read about? Hopefully others will enlighten you. I have a possible diagnosis of MS.

My advice would be that if you are feeling worried go back to GP and ask for a referral now. It is likely to take time anyway and I don’t think your symptoms are likely to just be down to vit D deficiency. Also, try to lighten your load a little (not easy with 2 children I know!) but for me stress is the worst thing and most likely to exacerbate my symptoms. I haven’t changed my life - still work full-time and mother 2 children - but I’ve expected less from myself and although that can mean that the dirty washing piles up a bit and the house is messy, I don’t berate myself and stress over it. I’ve realised that stress isn’t always caused by work-load but by how I judge myself, so I’m letting myself “off the hook” a bit and feel much better for it.

Take care x

3

Hey Heinz I can relate to the numb but not numb feeling. I have a patch on my foot that is numb but I can feel it. Can’t really describe it. My outer three fingers go numb which I has always put down to a pinched nerve (ulna nerve I think??) but it’s probably related to whatever is going in with my nerves just now (still waiting for results of MRI and to see a neuro but I do know I’ve got a vit b12 deficiency -who know how long that’s been going on and how much damage that’s caused!!). Most of my symptoms have gone since the last episode (started beginning of April!) but been left with a weak left leg.

4

Hi Heinz,

I haven’t been diagnosed yet (results tomorrow hopefully) but have had same symptoms as you and GP now thinks (pending diagnosis and after several more symptoms) is related to MS especially the torso pain (MS hug is very similar according to both my GP and a couple of friends I have who have experienced it - and yes the best way I found to deal with it was to tie a scarf around my torso tightly but it did go after about 3 weeks). I also have ulnar nerve problems - usually just on my right side but more recently on the left (the outer 3 fingers are innervated by the ulnar nerve) which include altered sensations, numbness and weakness depending on how bad it is that time round. I agree with Larks that the best thing to do is to ask GP for a referral now - these things take so long anyway. There are loads of things that could cause this so hopefully they can get to the bottom of it.

As for how to manage it all - still learning myself but basically don’t overdo it, rest if you need to, don’t be too hard on yourself and prioritise what needs to be done. Celebrate the little successes and when things get you down, turn to whoever you need to for support and advice which helps a lot in stopping stress as well as helping you cope. Hope it all goes well for you x

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Hiya Heinzbeanz,

No way is this any sort of a diagnosis; you obviously have a Neurological problem so the sooner you see a Neurologist the better.

It sounds like your tourso squeezing could be the ‘MS Hug.’ Although it has the inits ‘MS’ does not mean you have MS.

MS hug or girdle effect

Why does MS cause the hug or girdle effect?
This is a spasm-type symptom that is one of the more unusual effects of MS. Between each of our ribs are tiny muscles called intercostal muscles. These hold the ribs in place but provide flexibility at the same time. If these muscles go into spasm, the result can be uncomfortable or painful. This is sometimes referred to as ‘banding’.

Effects
People with this symptom of MS describe a burning or tight sensation which spreads around the rib cage, causing a crushing feeling that can range from uncomfortable to very painful. Sometimes it is accompanied by pins and needles. Most commonly felt around the ribs, occasionally the effect is experienced in the hands or feet.

Treatments
Individuals with MS who experience the hug or girdle effect do not always have the same degree of intensity of pain. For some, it is no more than an uncomfortable feeling, which passes without the need for any treatment. Others, however, need pain relief to deal with the spasm. Analgesic cream, warmth and painkillers are all used to provide relief. Your medical professional will discuss how best to manage your pain and will bear in mind any other drugs you are taking

See http://www.mult-sclerosis.org/diagnosingms.html that will give you some info about the diagnosis procedure.

Good luck

G

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Thanks for all of your replies. Yes. It does feel the same as the ms hug you posted about, ggood. I will go back to my gp and ask for a referral. I need to get my head around this and prepare for what is to come. Thanks for all the tips and I’m sorry others are experiencing this. I do appreciate the support HB x

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I have confided in a friend tonight that this could be a possible diagnosis. Apparently I’m an idiot for jumping ahead and not waiting for the dr to determine what’s the matter with me. Feeling foolish and misunderstood. This period is full of questions, surely. It feels quite scary. No on wants an MS diagnosis :frowning: Sorry. Just feel a bit taken aback by her response. By what I have read here it may take a long time to get any sort of diagnosis if this is neurological. How do people deal with the uncertainty ?

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Hi Heinz,

I guess we all kind of get used toi the uncertainty and being in Limbo, its hard and very frustrating but as time goes on, for me anyway, I have learnt to be more patient. Got no choice really.

When I first joined this forum a year ago I was gobsmacked by the stories of how long peopel have had to wait for dx and it terrified me, I didn’t think i’d be able to cope, but I did and I do.

In terms of trying to move things forward and get a referral etc. take no notice of what others think, its your body, your life, you know what you need to do. If others could spend a day in our shoes i’m sure those sceptics/unsympathetic people would be hammering on medical doors for help.

Good luck on your journey. We are all here for you.

Bunny xxxx

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Thank you bunny. Your reply really made me think. This forum is such a support already. I know I have to try to stay positive. HB x

10

Hi Heinz,

It took around 6 years to get my diagnosis following investigations for brain tumours as my 2 first flares seemed to fit the criteria. As they only scanned my head ( which only has 2 small patches SUGGESTIVE of ms) nobody saw the lesions in my spine. While the flares were scary, I soon forgot about them once my symptoms eased. It was only with my 3rd flare that I was left with lasting symptoms but it did get me my diagnosis.

I suspected ms from the start but like you, people said I was just scaring myself by looking online and there was no way I had ms. I think other people have a harder time getting their heads round it than the sufferers because they don’t know much about it. I hope your investigations are fruitful and you find the cause of your symptoms, I hope it isn’t ms but if it is, it is manageable and you will be ok.

Take care x

11

Pumpkin patch, I must apologise, I didn’t see your reply. Thank you. Sorry you had such a long route to diagnosis.

So I’m updating.

I am still experiencing all symptoms as above. Some fade and I have days with less symptoms.

The troubling ones currently are an electric shock or current feeling shooting up my legs when I bend my head forwards to my chest. I get the same feeling down the base of my neck about one or two inches. When I was initially examined (in May) they asked me to put my head to my chest but I didnt feel anything. Now I feel this every single time I look down.

It almost is like the sensation when you bang your funny bone and it shoots up your arm, only in my legs.

The other thing is the weakness and heavy legs. Oh my goodness is this driving me mad and making me feel about 80 not 29!

I have a neurology appt on 28th August. Does anyone have advice for what to expect/ask etc?

Many thanks for your continued suppport, HB x

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I take it the appointment on 28th August is your first neuro appointment? If so, the neuro will probably ask you about your symptoms, how long you’ve had each one, whether they come and go or are always the same, etc. My neuro appeared to work down a mental checklist, covering various bits of me that work fine at the moment. It may help if you spend time before your appointment making notes - what your symptoms are, when they started, if they’re constant or come and go, any you’ve had that have gone away, any triggers you’ve noticed. Use your notes to help you answer the neuro’s questions. My neuro also did some tests of my reflexes - hit my knees with his hammer, scraped the hammer up the sole of my foot etc and he had me walk across the room then try to walk heel-to-toe (that was hilarious, I can’t do it and I got the giggles).

At the end he told me he wanted me to have an MRI of my brain and spine, a visual evoked potential test and a lumbar puncture.

At my second appointment, after all the tests had been completed, he went over the results of each test and confirmed that I had MS. We discussed whether it was RR or PP - he explained the differences and asked which I thought I had, then agreed with me that mine is PPMS.

I had a follow-up last week, 6 months on from diagnosis. He asked how I am, any new symptoms, gave me medication for one that’s bothering me and told me to get the repeat prescriptions from my GP and said he’ll see me again in 6 months.

None of it was particularly scary but I take my husband with me and he sits in on the consultations - two heads are better than one when it comes to remembering everything that was said.

Good luck

1 Like
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hi heinzbeans

my neuro likes the way i explain my symptoms (luckily or he’s think i was a nutter).

my feet feel the same as yours and i explained it as it feels like the floor is playing tricks or that i’m wearing thick foam socks.

i hope you got some answers today.

carole x

14

Mitzi, yes the appt on the 28th is my first neuro appt. Thank you so much for that information; it is really useful. Pigpen, I also feel I’m wearing thick socks and gloves. In a way it’s nice to know someone else describes these experiences similarly. It’s 4:00am and yet again I’ve been woken by this awful electric shock sensation in my legs. I’m getting so exhausted. I avoid bending my head in the day but at night I can’t control it so well. Ugh. Sorry for the moan. It’s going to be a long month until I see the neuro. Xx

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hi heinz

you say you avoid bending your head. can you look up or reach up without feeling faint?

i developed postural hypotension, where my blood pressure plummets and i faint.

the first i knew of it was when i came to on the kitchen floor in a puddle of blood with paramedics beside me!

i was reaching up for a spare box of teabags from the top of the kitchen cupboards then went down like a sack of spuds splitting my head open on the quarry tiled floor.

i can control it now and if i feel it coming on i sit on the floor until it passes.

i quite like it when i’m in bed and cant hurt myself - its like a rush!

carole x

16

Good ideas there from Mitzi on how to prepare for the appointment with the neurologist.

I hope that it all goes well, heinz. Your posts show that you have a real knack for explaining the hard-to–explain very clearly and well, so I am sure that you will do better than most when explaining to the neurologist how things have been.

Good luck.

Alison

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Pigpen No I really struggle, especially with things like drying/brushing my hair when my arms are above my head for any time. I go completely dizzy and feel (and sometimes I do) faint. I cannot shower as the same thing happens. Is that postural hypotenstion linked to MS or something separate? The bending my head to my chest affects my legs and the back of my neck. Very old electric shock feeling. Occurs whether standing, sitting or lying. Alison thank you. I hope it will help the neuro assess me then!

1 Like
18

Hello. Just coming to give an update really. So on Wednesday my legs were so bad I couldn’t go to work. I couldn’t walk. I rang my gp and went down to see her. She sorted me an appointment at the emergency medical decisions unit at local hospital. I arrived there and after a few hours of questions and examinations was told I would need an mri and lumbar puncture. I was kept in overnight. Eventually in Friday morning I was seen by a neuro registrar who said it was probably CIS but to wait for the scan etc. Scan came back and they are very definite it is MS. I’ve had three days of IV steroids and a failed lumbar puncture (far too painful! Have to go back and repeat it aaaargh). Been given walking aids and they are sorting me out a wheelchair. It’s a lot to take in. Especially with children. At least I know what it is now. I’m not going mad or imagining it! They said the l’hermittes sign (electric shock) is due to lesion on my spine. Thanks for all the support over the last few months xxx

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Sorry to hear you’ve joined us, but I’m glad your GP is on the ball and that you know what you’re dealing with. Have you been referred to the MS nurse? She can refer you to services like physio and Occupational Therapy - the OTs can help with equipment and adaptations to make it easier for you to manage at home.

The MS Society does a whole range of publications, including booklets to help parents tell their children about MS. Have a look under the Support tab at the top of the page.

(((Hugs)))