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New, frightened and stressed

Hi - I have no diagnosis as yet but believe myself to have PPMS. My symptoms started in Dec when I awoke 1 night to discover the fingers in my right hand were totally numb - I put this down to lying awkwardly & put it out of my head. It happened again maybe a wk later and then a mild pins and needles sensation started in my left leg also - sporadically. The numbness has increased in frequency over the last 10 wks to happening 4-5 times a wk now in either arm (still only when sleeping) and the pins and needles are there maybe 70% of the time - mostly in my right lower arm and hand. My feet and right hand feel very cold a lot of the time. I get mild dizziness sporadically - some days not at all and other days it may last for several hrs - same with blurred vision. At the start of Jan I went to my GP who tested my nerve responses and did a raft of blood tests - all came back clear at which point he more or less intimated I was wasting his time looking for further investigation and suggested I see another doctor for a 2nd opinion. This I did and she did various tests on my reactions/responses and said that whilst she didn’t know what was wrong she didn’t think MS because there is usually a space between symptoms and they don’t just start and stay there. However I am 47 yrs old and have read in Net (which I know is prob worst think I could do but my head is wrecked with worry) that mostly people who are diagnosed after 40 yrs old is will be diagnosed with the PPMS strain in which case the symptoms never go into remission and just get progressively worse - is this true? I have an apt with neurologist next wk but it seems like a lifetime away. Does anyone else recognise these symptoms? My legs sometimes feel a bit wobbly (v mild) particularly when going down stairs but I’m not sure if that is because I am barely eating or sleeping - I can still go out and do a 2 mile walk no prob without any tiredness - although I do get mild light head perhaps.

Hello Annie K

Welcome to the forum

I really do understand why you are worried and of course your symtoms could relate to something neurological.

Equally, the symptoms you are experiencing may relate to other things,such as a trapped nerve for example.

The positive is that you have a neurologist appointment next week.

Make a short list of the symptoms that are bothering you the most. Do not give the list to the neuro but use it as a reminder so that you don’t forget. Is anyone going to the appointment with you?

Good luck, let us know how you get on.

xx

Hi Blossom, thank you so much for your quick reply. I am taking a friend to the apt with me next week yes and thank you for the advice I will bring a list of the symptoms with me. The reason I’m thinking it’s not a trapped nerve is that it seems to be affecting my 2 lower arms and 1 leg.

The numbness is concentrated only during the night (although I think perhaps that is because I find that when the tingling starts somewhere during the day - if I can massage the general area and stimulate it the tingling seems to wane, whereas during the night I don’t realise perhaps the tingling has started and it progresses then to complete numbness).

My feet are both very cold alot of the time and also my right hand. I got up in the middle of the night 2 wks ago and couldn’t walk a straight line as I was so dizzy and my left lower leg felt quite numb - it was the next morning I phoned the doctor in a very emotional and distressed state and he basically told me that the blood tests were clear and he didn’t believe further investigation was necessary but that if I wanted I should perhaps get a 2nd opinion.

Is dizziness common place with MS or not? - that 1 incident was the only time I was very dizzy though, normally it is just a bit of a light head but I can function fine. Sorry I know you probably think I’m over-reacting but I’m just totally stressed at the moment.

Hi,

PPMS mostly starts with walking issues. For example drop foot appearing after a long walk. RRMS usually starts with sensory stuff like pins and needles and vision issues.

To be honest it is most likely something else entirely as it doesn’t sound to me like MS so please try not to worry. Waking up with pins and needles and then them going away sounds more like carpel tunnel syndrome.

Also make sure they tested your B12 levels as your issues sound more like that.

Moyna xxx

Hi again Annie

Do your best between now and next week to try and reduce your stress levels. I know it won’t be easy but getting over anxious will aggravate your symptoms.

You obviously have a good gp to agree to a neuro referral.

Please don’t search up on ms and symptoms at the moment because it won’t help you. Hopefully it will be all down to something easily sorted.

There are long lists of things, ranging from simple to serious that can be causing the present problems.

((((((Hugs))))))

Hi Moyna - thanks alot for replying, yes I got my B12 levels checked and “nothing remarkable” was the result. I had discounted carpel tunnel because I didn’t think it would affect my 2 hands and my leg at the same time. Thank you for your reassurance, no I don’t have walking problems at all. I will try to stay positive - this forum has helped me put some perspective on the situ though and I really am so grateful for that, thank you so much xx

Hi Blossom, I have health insurance through my work hence my referral, my initial GP reckoned the blood tests ruled out anything sinister (which obviously they can’t) and then my 2nd opinion GP agreed to give me a referral letter when she heard I had health insurance. As you say I will try to stop stressing and over analysing until next Wed and pray all will be well and think positive. thank you so very much for your support, I am so appreciative of the support and advice, i really am xx

Hi Annie, welcome to the forum Reading through your symptoms as a whole, doesn’t make me think MS. Some could relate to MS, tingling pins & needles, numbness…but they also could fit many other things. Make a list to take with you when you have the neuro app. Try to keep it fairly brief with just a few bullet points, if confronted with a huge list the neuro could be more likely to dismiss it…they need to be treated with care

Good luck for next week & try not to worry, I wish my neurology appointments happened that quickly!

Rosina x

Hi Annie, it’s going to sound easy coming from us, but try to relax and make some genuinely good time for yourself at the moment, regardless of what is happening with you, you will feel better for it.

You are at the start of the diagnostics, to find out what is or isn’t happening with you may take some time, a lot of tests and a good dose of patience. I got a highly-active RRMS diagnosis in April 2014 at the age of 38, after 6 years of vague symptoms and 3 of pronounced symptoms. They believe I have had MS for at least 20 years. PPMS is quite unusual, so try not to read too far into things until you know for certain, this usually presents with poor mobility.

If you are going to see a Neurologist, be mindful that the check your entire system. This may involve a lot of blood tests, MRI’s, Lumbar Punctures and a deal of waiting around. There are a number of Auto-immune diseases that can mimic MS and or damage the system and MS is one of the more serious ones, which means they like to discount the others first. Count on your appointments with the Neurologist visits as a journey, each one is a step closer and diagnosis takes a while.

For comparison, my GP believed I had B12 deficiency, as I presented with total numbness in both legs from the knees down, which lasted over 3 months. I feel over frequently, appeared drunk, had frequent-urination, visible spasms under my skin which were fairly violent and painful and I had serious cog-fog. I had to fight to see a neurologist. With the Neurologist in a period of four months, I had 2 MRI’s no contrast, 1 with, a lumbar puncture to check cereberal fluid and over 6 blood tests. We checked for B12 deficiency, Lymes Disease, Cancer, Rheumatoid Arthritis, Fybromalgia and lots more besides and I saw a Rheumatologist.

I ended up testing positive for O bands in my cerebral fluids, each of my scans showed significant lesions and they moved region each time. It was a concrete a diagnosis as you could get and treatment has thankfully started.

It could be something for you, it may be nothing, perhaps even a virus dampening your system. Try to relax and be prepared to work through all kinds of scenarios, I hadn’t ever considered MS ever, I had no idea what it was and I thought I had a blood issue, thankfully the Neuro found it and explained it to me, suddenly a lot of very longterm quirks made sense.

Best of luck on your journey, keep a open mind x

Thank you so much for such a comprehensive response and for taking the time to give me all the information above, it certainly gives me some food for thought as I was hoping for a much quicker diagnosis - i guess that’s the ‘ideal’ for everyone. Its good to know what your journey was, the multiple tests you went through and the approximate timeframe for all and will help me to put some perspective on my current expectations - thank you so much for sharing. I am trying to keep an open mind and trying to relax and be positive - this forum has been absolutely great for me, I’ve gotten such good advice and felt such great support, I can’t thank everyone enough for helping me through this and I will continue to focus on a positive outcome. xx

I am only 35 I have PPMS I got refered in April last year and was diagnosed by September mine was fast I had mri LP and vep, but as others said PPMS is mostly down to walking I can barely walk at all and I am quite young, first symptom for me was pins and needles then floaters across my field of vision which has not improved yet.

In March 2013 I could run now I can barely walk using my crutches, I am dizzy/sleepy all time with bad vertigo and drop foot making it worse, PPMS is mostly for those with walking problems yours could not be Ms at all try not to worry, until you have seen a neurologist.

Thank you Alysea, I am so sorry to hear of your difficulties, I truly hope that things improve for you as the drugs and treatments are further developed. I have no issues with walking or drop foot - for example today I have some dizziness, pins & needles in right hand and woke up during the night with both hands about 80% numb. I think it’s the ‘not knowing’ that’s causing my stress, if I had a concrete diagnosis at least then I could start to deal with it but from joining this forum I realise I will just need to be patient. i have read that MS can cause itchiness, I’ve had chronic urticaria for 14 yrs for which I took an antihistamine every day but stopped in Oct 13 in an effort to try to deal with it more naturally - I wonder if that would have any bearing on my diagnosis. I’ll put it on my short list for the neuro and will see how I get on. thank you so much for taking the time to respond to me - this members of this forum have been so so kind to me, I’m truly over-whelmed with the support xx

Thanks Annie I will be ok hoping LDN does help but not on any meds except baclofen Ms nurse is phoning me next week, I might need rehab to learn to walk again I have an assessment for it at end of month, if your walking or legs start to give way then it’s possible it’s PPMS.

​but I didn’t think I had Ms thought it was artharitis I had a gp that was saying I was fine for a year I ended up changing in end new one is brilliant try not to worry when you see neurologist just tell them your symptoms and go from there.

good luck x

After reading all of these comments I wanted to know if any of you could offer me some advice. I have been feeling lightheaded for 3/4 weeks now, I have been back to the doctors on several occasions and had blood tests, for diabetes, thyroid, B12 etc and everything has came back fine.

Last week i felt a numbness in my right leg and forearm, which I just put off to sitting in the wrong position. However over the course of the week the numbness in my right leg and right forearm has been coming and going - mainly at night when I am sitting watching TV or when I am in bed. I felt a sharp stabbing pain under my left rib cage, and a real sensitivity in my teeth, but I am not sure if this is due to reading about MS Symptoms and if this new symptom is stress related.

I have asked to see a neurologist but I have been told that they dont know when this will be. I can get around ok, it is the lightheadedness and the numbness/ pins and needles/ whole body tingling that is driving me crazy. Does anyone have any suggestions - are these common symptoms of MS. I feel quite scared that I dont know what is wrong with me. x

Hi AKRISTY, I can’t be sure as I am in the same position as you - just suffering systems with no diagnosis. I am glad you mentioned a sharp pain under your rib cage because I had the same but it has gone for now (although I had it on the right), I am also experiencing sensitivity on one side of my mouth but only on one side and at the bottom only - I have never read that either of those symptoms are related to MS (or anything else for that matter) so I’m not sure if perhaps they are stress related or not. I have been having symptoms since mid Dec, my first symptom was numb fingers in the middle of the night and it has progressed from there. The last few wks I have had a burning sensation on the back of my right hand and slightly up past the wrist. I have been getting pain on the heel of my left foot which does work its way up the back of my leg or starts at the top of my leg and works it’s way down the back. The numbness affects both hands but not every night (and only ever happens when I am sleeping) but if I massage the hand it does tend to return after a couple of mins. I also get light headed during the day at times and I also seem to feel the cold more - I’m actually watching to see if the light head happens when I am out and feeling cold in case there is a connection. I have an apt with a neuro on Wed AM and very nervous about it to be honest. I will put up a post when I hear what the neuro has to say. I did get a hard knock to the head at the start of Dec so I’m also wondering if that had any part to play. I also had 8 x amalgam fillings replaced last year so that was another thing I was wondering, if perhaps I have ingested some mercury from that. I haven’t been Googling for several days though as it would drive you mad - some great advice on this forum and responses to my initial post and I am so grateful for the support I got here.

Good luck with the Neurologist appointment tomorrow Annie.

Let us all know how you get on

xx

Hi Annie K, I have the same symptoms, however today have felt that the right side of my face feels quite numb. I had appointment wit neuro last night who checked my reflexes, eyes etc etc and he said everything seems fine and that it could be related to stress /anxiety. I don’t know if I’m convinced. He said because I had MrI 3 years ago then there was no need to scan me again, however I have insisted that I want one. I am waiting for appt for MRi to see what the outcome of that is goin to be. Let me know how you get on at neuro x

Yes of course I will update here once I have my apt tomorrow. I have a shortened version of my symptoms listed so I don’t forget to tell him something so we’ll see. I really hope I get an MRI tomorrow but maybe I am being unrealistic at the first apt but I am certainly going to insist on getting an apt for 1. The thing I can’t understand is why the numbness only happens when I am sleeping - the last 4 nights I slept on my back (like a mummy!!) and neither hand got numb (& I didn’t sleep well at all as you can imagine), lastnight I slept on my side with both arms tucked under my head/face and yet again 1 hand went numb. My face hasn’t gone numb although back in Jan along my right cheek/jaw and around the back of my head felt sore for maybe 2/3 days but it left and never came back since. I went to see an kinesiologist at the weekend which I’d booked mths ago to try to find out what foods may be causing the chronic urticaria itch I’ve had for 14 yrs and she said the urticaria would definitely have no connection to MS (I was thinking maybe the itch had been the MS working on me for yrs). She obviously isn’t in a position to know if I have MS or not but she said her gut feeling is that I don’t (just like my GP) so I guess I am hoping they are right and it is something very curable/fixable. Sometimes you have to push and push for answers and not get palmed off so I will hopefully be able to find out something tomorrow. Will keep you all posted x

Well I am just home from my appointment - bit disillusioned if i’m being honest. The neuro I saw specialises in MS (& in his late 40’s/early 50’s so not a ‘young pup’!), as far as he is concerned he does not believe I have MS. However, the only test he done was to run a pin from my big toe to just above my ankle on both feet and to assess where I believed he was pressing the heaviest - other than that he never checked my eyes, reflexes, - nothing else?? He did write down everything from the 1st symptom the whole way through to now. Based on that info he believes i have a ‘touch of neuropathy’ which is what is causing the tingling and burning sensations in my hand, the dizziness he puts down to “probably a trapped nerve in my neck” and the dull pains down my leg he said are just a touch of sciatica. He said if I didn’t have the neuropathy I would probably pass no heed on any of the other twinges. He reckons the numbness I am waking up with in either or both hands is probably carpal tunnel - he said the general rule of thumb is that “if the numbness wakens you its carpal tunnel, if you wake with it it’s most likely a trapped nerve”. Maybe its because I very much like things “black and white” but it seems a bit ‘unusual’ that all of a sudden I have carpal tunnel (in both hands at the same time), sciatica, a trapped nerve in my neck (even though he didn’t even check my neck) and neuropathy?? He believes the neuropathy will go away in time. I asked him if he would refer me for an MRI but he said there was really no need, I asked him if he was sure I could rule out MS and he said yes. He suggested I take Vitamin B12 for 6 mths even though my blood tests said that my B12 levels were fine, he said that the blood test that GPs do for B12 deficiency is well known to be totally unreliable and that I should go ahead and take the supplement as he advised.

My daughter has reminded me that given I was going privately that if the neuro thought there was any merit in giving me an MRI that he would have because it’s only on the NHS that they scrimp and penny pitch - but I dont know. I thought I’d be further on this afternoon or at least more reassured but I’m not feeling that way. OK he’s a neuro specialising in MS and I guess I should give some merit to that and the fact he does not believe I have MS - but to send me away with the advice that I’m to take vitamin B12 for the next 6 mths and come back to him if my symptoms are still there then or are any worse doesn’t appear to be me to be advice that gives me much reassurance. :frowning:

Hello Annie

It is good that the neurologist doesn’t think you have MS and he has given you some possible reasons for your symptoms.

If you are willing to pay for a MRI scan, then you can have one privately. Or you could take the neurologist’s advice and try the vitamin B12 and see how you feel in six months.

I know it’s stressful and worrying but six months will soon pass.

Take care xx