Hi - I am new here. I’ve been unwell for about a year.Originally I thought I had ME as last April I had a sudden energy loss while working in the garden, from which I haven’t really recovered. Over the last year I’ve had every blood test the doctor can think of for thyroid, kidney, liver function, infection etc which are all normal. I also had my heart checked and although arrhythmic it’s fine.Recently also had a colonoscopy which is also ok.
The more I look at my overall symptoms the more I see MS. They are:
Massive vertigo which lasted August to November, but not since
General nausea on and off and frequent
Overall feeling that I am trembling - almost like I have a current running through me. This was internal until a week ago, but now I am visibly shaking ever so slightly, but it is on and off but frequent.
I have a burning sensation in my neck from the base of the skull down to the shoulder blades - on and off but frequent
I have an overall ‘ill’ feeling 90% of the time - hard to explain, I just feel terrible.
I also slur my speech sometimes when I am feeling particularly bad.
My doctor says none of this points to MS - but that doesn’t seem to be what the MS society pages indicate. He seems to think that I would have ‘numbness in my limbs’ if this was MS and doesn’t seem to want to investigate further because of this. Although I don’t have numbness, the skin on my face doesn’t feel as sensitive as it used to . I can still feel things, but it seems like touch is through a blanket rather than irectly on the skin.
I’ve had a hard time dealing with my doctor over the last year. He hasn’t been particularly empathetic and very dismissive at times. Given this has become progressively worse over the last year, I wondered if anyone here can say if this ‘sounds’ like MS? Can anyone suggest how I can get more from my doctor?
Feeling a bit lost and panicky.
Hi Katzz, The problem is that although they do show some similarities to some ms symptoms, they probably aren’t text book. Most people I think tend to notice a patch of numbness or the optic neuritis. However, this doesn’t mean that it isn’t ms. Unfortunately gps are what’s their title suggests, ‘general’ practitioners. They know little bits about loads of things, but unless their training as a doctor involved a spell in neurology, it’s quite possible that they have limited experience. Did someone put the idea of ms in your mind, or was it that horrible dr google? The problem is, a list of symptoms can bring up ms, but it can also bring up many other different conditions. Firstly, I would suggest putting ms out of your mind. Secondly, I would consider returning to your gp, and tell him or her how your symptoms have worsened and that you want to be referred to see someone more specialized. Please don’t worry, the chances of it being ms are quite low, and the whole stressful situation this uncertainty is causing you could also be responsible for the new symtoms, which is why putting ms out of your mind is a must for now at least. I am not sure I have been helpful, but please don’t worry yourself about ms too much, or you really will end up feeling ill. Take care J x
I feel your pain, literally.
I’m also seeking diagnosis and struggling with the frustration of the waiting game. I have a great GP who is very empathetic and doing all she can to get me an earlier appointment to see a neurologist. I’m currently booked for their earliest slot on 21st May.
I’ve been dealing with fatigue, vertigo, Trembling and issue with speech, vision in my right eye and memory recall issues. However, I am also having real issues with numbness, pain and tingling in my hands and feet. This is making it painful to walk at times and I haven’t been able to use a pen in about a month. I drop things all the time and it feels like I’ve come in from the extreme cold but my hands won’t warm up. Problem is my hands aren’t cold.
As frustrating as it is we both need to hang on in there until we get a diagnosis. Miss Demeanor is right. It could be so many other things. My Ceoliac disease was originally miss diagnosed. Getting a correct diagnosis made all the difference. I’m not one of those people who bottles things up, that never helps anyone. Unfortunately my mum was diagnosed with breast cancer in January. It’s being treated, but I think one blow per quarter is more than enough for the family so I’m holding off on saying anything till I have a diagnosis. Again, in full agreement with Miss Demeanor, this is another stresses that could be causing my symptoms.
I’ve been prescribed Naproxen and Kapake to try and help in the meantime. The Naproxen is making a little difference. You might want to ask your GP about getting something to help you.
This is my first ever post so I hope it helps.
Hi I’m worried about myself,I have dizzy spells daily,left hand goes numb now and again,lips feel tingly ,past week nose feels numb now n again,had lower back ache very bad wich comes and goes and now getting headaches ,yesterday it was from base of neck upwards,this has been going on now for a few years,does this sound like MS symptons xx
Hi Katz - just out of interest, does the intermittent burning on your neck/back happen when you bend your head down? I saw the neuro last. Friday and she asked me exactly that, and I said - I don’t know (because I hadn’t thought to notice that) but I did tell her I had had electric shocks down my leg when my head bent she then nodded and said you have L’Hermitte’s. I have since been very aware of this, and it turns out It is happening when my head is bent down - only it appears that I am doing that a lot at work and at home bent over computer etc. and hadn’t realised that was causing it! Apparently L’Hermitte’s a very common sign of MS (but can be caused by other conditions). I also agree you should go back to the GP and ask for a specialist opinion, I don’t have numbness in my limbs, but I am seriously being considered for MS, so although it is a common presentation, it is by no means the only one. Having said that, when my symptoms first started 3/4 years ago, I pushed and pushed my GP for referral and got to see a neuro which didn’t get me anywhere because nothing showed up and he ended up saying it was stress related. Assuming that that doesn’t happen again this time, I can only assume that it was too early for them to find anything. I had to put all thoughts of finding out what my symptoms were out of my head, and got on with life. Now, things have become clearer and my experience of the process is better because they are leading it, not me. If I could do it again, I would wait longer for things to reveal themselves before putting myself through that trauma. If this is MS then in all likelihood things will settle down for you over the coming weeks/months and may not rear their ugly head again for several years, as happened for me. If you want to find answers though, perhaps you should try a different GP in the practice? Thanks, Leah
Hi and thanks to all who replied. I’ve been in bed a lot this week and so couldn’t get to the PC.
Leah - It seems that if I tuck my chin into my chest it definitely brings on the burning in the neck. I work at a laptop for 8 hours a day and only recently got a docking station and raised screen last week, and didn’t have the neck pain for a week after that, but just did the check and it immediately returned when I tuck my chin in and stretch my neck. Thanks for pointing that out.
I saw the doctor again last week and he open admitted he is ‘lost’ But offered a referral to a rheumatologist who I believe may check for fybromyalgia. I kind of wish he has admitted that 6 months ago. I did try to see a different GP in the practice a few months ago, they were quick to refer me back to the original Dr as ‘he knows the case and it’s now long running’.
Getting on with normal life is difficult. I haven’t had a normal life for about a year. I run out of energy very quickly and just overall lose my general body strength to carry me around, so difficult to occupy myself with anything other than books. Unlike some others, it doesn’t settle for a long time and then return, although it can occasionally settle for about 10 days and then return. I can only manage short trips out and only travel very locally on my own. Given that it’s been going on a year I am starting to get depressed, which of course exacerbates the whole problem, but am afraid to take anti-depressants incase it masks any markers the doctors might look for . It’s difficult to know what to do. Also don’t want to sound like I am moaning… <reading the above that’s difficult to believe isn’t it? I suppose I am just scared and confused when there are so many unexplained things happening.>
I guess I will know more after seeing the rheumatologist doc and can maybe deal with how to go forward with life then.
Hi Katz - I don’t think that antidepressants will mask anything that the docs are looking for, so if you feel it may help then it may be worth a try? It doesn’t inspire confidence when the doc says he is lost does it! Hope you find some answers - living with health problems without a dx is very hard, be nice to yourself… Leah
Hi Leah - thanks for the encouragement.
I had an appointment with a rheumatologist last Friday and he tells me he is 95% certain that this is fibromyalgia.
I know many people get this diagnosis before MS, but he tells me that he has dealt with MS sufferers before and my symptoms don’t present as such. I do feel ‘lifted’ that it isn’t likely this is MS and I guess knowing what I am now dealing with is a relief.
It still feels like a kick in the stomach though and I suppose it’s anti-depressants here I come since they are prescribed as pain relief for fibro. I’m glad I finally have a plan though.
Hi. Katzz, The antidepressants they use (amytriptyline) are also used in MS too for pain, and are used in very low doses in both diseases (generally much Lowe than the antidepressant dose)and are generally very benign (once you get used to the drowsiness!). I hope you get better soon… Leah