I just wanted to run by you some symptoms I am having if you are able to tell me if they sound simmilar to MS. I’ve read a lot of these threads already and you all seem very helpful, lovely and supportive. I understand that MS symptoms can sometimes be very vague and simmilar to other conditions but I’d really like to know whether it’s worth going back and being a bit stronger with my GP.
The symptoms I’ve been experiencing in the past few months or so are nausea, diziness, pins and needles in my legs and sometimes arms (although it is not particularly painful, just the sensation) and also what I’d describe as tremors. The tremors are not ‘big’ enough to make me jerk dramatically but I can feel them in my legs arms and shoulders and sometimes they cause small movements, but they happen almost constantly and are very annoying. I have been feeling very confused, forget things I’ve just said and have a hard time concentrating (I am a university student currently working on assignments and this is troubling me very much!!). I also have been having headaches but since I was about 15 I have suffered on and off (very much on at the moment) shooting pains in my head. I also less often get random shooting pains in my chest, side etc. As well as this I have been suffering from fatigue. Usually a morning person I am struggling to get out of bed before 12 and climbing the stairs is an effort. My chest is also very tight and I feel like I can’t get enough air in sometimes.
Recently also I have also had slight blurred vision in my right eye. I went to the optician and they confirmed this. I did have pain behind this eye but this seems to have gone now. This does not seem to have worsened.
Just to give a bit of context I also have a mild curvature of the spine. I get a lot of lower back pain and my left leg is often very weak. I have always attributed this to my curve although doctors and therapists have always said the curve is too mild to cause the pain I describe and it suprises them. I am now wondering if it is more an MS thing or a combination of the two.
I’ve been to the doctors about fatigue and nausea and a general feeling of being unwell on and off for the past 4 years, although it’s never been as bad and I’ve never had as many symptoms as I’ve had in the past month. I recently went back and the Dr said he suspected it’s low iron and that “he finds it hard to believe it would ever be anything more serious in a 22 year old”. This isn’t very comforting when you’re feeling like this and you don’t feel you can even get out of bed as I’m sure you’ll all appreciate! I had my iron, b12 etc all checked and they all came back fine.
It does seem a lot of my symptoms are very simmilar to MS. I wondered what your thoughts were and whether they were simmilar. If so, I’m going to push for a neurology refferal. It’s majorly effecting my University as well as being very worrying : ( I think my family also think I’m a total hypochondriac!
Hi Emma - you will get a response soon, it’s been incredibly quiet on here lately. I do think you should push your GP for an explanation of your symptoms, you shouldn’t have to struggle on with them. You are NOT a hypochondriac! Have you had tests for thyroid etc? There is so much your doctor should be looking for. Have you looked at the information for ME? (Only saying that because I’ve just been diagnosed with this and a lot of your symptoms sound similar to things I’ve read).
You definitely need further exploration and a referral to a neurologist - you would not be ill for no reason whatsoever!! Find another GP if necessary. The leg weakness/back pain should at least be scanned to look for damage.
Someone else, better informed, will come along soon and maybe give you better advice.
Hi Deb, Thank you so much for getting back to me. I’m not sure if they checked my thyroid, I know they checked a lot of things on the blood test and they all came back fine. I hadn’t considered ME as my fatigue isn’t always the worst symptom although perhaps that’s a misconception of the condition? Do you think it’s worth directly asking my GP for a neuro referral? He’s quite old fashioned I’m expecting some eye rolling Part of my university course is a busy placement coming up in February and I’m panicking about being able to cope with it. Thanks so much again for your reply, Emma x
Hi Emma - from what I understand fatigue doesn’t have to be the worst symptom but still it’s clutching at straws as much as thinking of MS without a proper examination.
I do think you should ask for the neuro referral directly and even if your GP rolls his eyes etc at least you will get what you want/need. It’s really irrelevant what he thinks of you if your symptoms warrant a referral and you get it. Be strong!
Your GP may find “it hard to believe it would ever be anything more serious in a 22 year old” but the basic fact is that it is not normal for a 22 yo to feel like you do and it deserves proper investigation. A fair few conditions can appear in the 20s and 30s, including genetic conditions (any family history?) and neurological conditions such as MS. Then you have all the other possibilities such as migraine, vitamin deficiencies (I wonder if the GP ordered every test?), thyroid, etc. Writing it off as low iron (especially in the face of a normal iron result) is not on.
Did the optician give you any reason for the blurred vision? The accompanying pain makes me think it would be worthwhile getting a referral to an ophthalmologist to see if they can confirm the cause. If it was something associated with neurological conditions, then your GP should be referring you to a neurologist without any quibbling.
Even without that, I think you should push for a referral. The sooner you know what’s causing it all, the sooner you can get some help to treat and/or manage it.
Hi Karen, thanks for your reply! To my knowledge I have no family history of MS. I think the blood tests run were quite thorough although he did not talk me through them, I know he tested for other things such as coeliac and diabetes etc. is there anything in particular you recommend I ask my GP to test for? My optician didn’t seem concerned, I think it was put in the natural deterioration pot. I didn’t have the pain then, I had it in my lowest and now I don’t seem to have it again so I don’t know if I’d feel a bit silly asking to see an ophthalmologist if its gone :(. Thanks again for your reply Emma x
I have booked a GP appointment for Monday evening. I am taking my Dad with me for moral support and to ensure I don’t get ‘fobbed off’ - is that a bit silly?
Just a question on what people are describing as ‘numbness’; new symptom as of yesterday, wobbly legs. It feels as if my thighs have a build up of pressure, energy or something and aren’t supporting me properly and like wobbly knees. From the knees down my legs and particularly feet and toes feel freezing and have done yesterday and today (although not cold, not freezing to the touch) bed socks, hot water bottle, nothing seems to be helping.
Is this numbness? I can still feel touch and they feel kinda itchy but would I describe this to the doctor as numbness. Have others had proper, can’t feel a thing numbness?
Hi Emma, Ooh, how to describe the numbness, well for me it’s something like this: I can still feel, I.e. if I get my nail and dig into my feet or legs I can feel it but it is altered. When I put body lotion on my feet, legs, abdomen all feel altered in sensation. It is like me about to go completely numb or I am coming round from being completely numb. This started in my feet after a couple of toes and underneath them started feeling ‘wet’ and a bit tingly. Then they went numb/altered sensation and that was that. Then I realised my legs had joined the party very soon after. This has been part of my current episode of symptoms that started June/July. It is there all of the time If taking your Dad will help you, then that is what you should do. I think it’s wonderful he is so supportive of what you are going through. Let the symptoms do the talking, take a brief note of the most troubling symptoms and timescales etc. my other advice is to not mention any conditions. The only person that has ever said MS is my GP and that includes my Neuro!! Good luck Sam x
A build up of pressure and freezing doesn’t sound like numbness to me so I would recommend just saying what you said here rather than try and reduce it to numbness. Numbness to a neuro means lessened sensation through to no sensation.
Just tell the neuro what it’s like - let him/her decide on a one word description if needed.
I’ll cut and paste a thing I wrote a while ago about first consultations. It’s just my view so it’s not a set of rules!
Good luck.
Karen x
These are the things that I think help at a first consultation:
No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)
Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2009 (recovered): optic neuritis; September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2012 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.
Take a (short) list of questions if you have any.
Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.
No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.
No.3: Be honest. Do not exaggerate and do not play things down.
No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.
No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.
There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations are for your symptoms and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam. The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.
My dad has been with me with all my appointments (GP and Neurologists), steroid injection treatments and the dreaded lumbar puncture procedure - it’s always handy to have someone with you to be a “second set of ears” as there’s parts of the consultation etc that you miss.
Oh yeah one more thing - my dad is 70 this year and I was 44 in December - you’re never to old to take your dad .
Hi guys, Firstly I’d like to thank you all so much for listening and your great support :). The night before I went to the GP I had shooting pains, real tingly pins and needles in my left arm and then it subsided but my little finger and ring finger hasn’t really woken up (I can feel it and move it but it feels odd). I told the GP all my symptoms. He said that some symptoms pointed to ‘something like MS’ but there were ‘too many symptoms’ to point towards MS or perhaps ME. I was quite confused. I said that perhaps some ‘symptoms’ were irrelevant but I wanted to give him as full a picture as possible. Regardless he said that he would refer me to a neuro. Waiting times in West Sussex can be 4 months + but if I’m willing to travel it could be sooner so I’m doing the NHS ‘choose and book’ which they will send me details. I considered going private for the first consultation then back to NHS but the GP said its in excess of £300 and then when you go back NHS you’re on the bottom of the pile? :s As I left he said he doesn’t think it’s anything bad but that ‘if it is then he’s sorry for missing it’ which made a quite reassuring appointment a little bit odd. Haha. I will keep you all up to date (whether you like it or not!! ) Thanks again : ) Emma x
Nothing wrong with taking your dad (or indeed any family member with you) to an appointment. So far in my journey through limboland I have taken my mum and husband with me to appointments (though not both at the same time ) Tomorrow it’s my dad’s turn to come with me to the rheumatologist! I am still stuck in a limboland where my gp insists on taking the rheumatology route 1st and only then ‘if nothing shows up’ will they refer me to neurology. I’m 27 and have been dealing with weird flares of symptoms for 8 years so I know what its like to feel dismissed by medical professionals because of your age, indeed the rheumatologist I am seeing tomorrow dismissed me during the start of my limboland illness at 19 because ‘19 is too old for juvenile autoimmune conditions and too young for adult autoimmune illnesses!’ - ever get the feeling that you just can’t win?! Good luck with your journey through limboland I hope that you a) get some relief from symptoms soon; b) get some answers and c) the answers show that its something treatable. Remember there are 100’s of things that it could be, many of which are curable.
Hi Rae! That sounds really frustrating. I suppose it’s reassuring that they are going down a non MS route but you know you’re own body and sometimes it makes all the difference to have your worries put at ease. Glad other people can empathise about the age thing - it’s like we’re not asking to have these symptoms!! I’m sorry it doesn’t fit with the criteria hah! Thank you very much the same goes for you Emma x
?