First post here… apologies if I’ve missed anything. To start off with a bit of background - my old man has been diagnosed with lupus and his dad died as a result of (I believe) primary progressive MS. So I’m “lucky” enough to have a family history of auto immune disease. This has already struck me in the form of psoriasis… I remember my dad telling me when I was a teenager to be mindful of anything “weird” but otherwise we haven’t really discussed this a great deal (I think mostly through optimism and that it’s a pretty tough subject for him). Anyway. I’ve been having a few issues which I have seen my GP in relation to. I’ll try to go through things as chronologically as possible but things will probably get a bit mish mashed! The first would be around 5 years ago - I noted this bizarre tingling/buzzing sensation in my right foot which got worse if a certain area was pressed. This faded and pretty much developed into my big toe becoming numb on my right foot, on the inside. Saw doctor, they said it must be Reynauds and sent me away. This then “spread” to cover both feet, with toes and front of feet being numb to most types of sensation. Right around the same time I began to have this feeling of not being finished when going for a poo. Returned to GP, bloods taken and diabetes, Crohn’s, celiac etc ruled out. I had a slight B12/folate deficiency so I was given supplements for this and the doctor supposed it might have been peripheral neuropathy in my feet caused by a deficiency. I ended up taking these for a few months. Neither of these issues have really changed, sensation in feet has gotten slightly worse. I had an endoscopy and gastroscopy and no abnormalities were found, so no treatment was identified for my poo problem and it still persists! Mixed amongst this I have had problems with my upper back (I’m closer to 7 feet than 6 so this is something to he expected) akin to a trapped nerve. I have seen a doctor numerous times regarding this. It recently got to the point where I was totally incapacitated and unable to move my upper body with shooting hot/electrical pains down my left arm. The GP basically said the muscles in my upper back were in complete spasm and sent me away with diazepam and other “goodies” which didn’t do a great deal to help but seemed to take the edge off. I was referred for nerve conduction studies on my feet and left arm (twice after the first referral got lost) and was told by my doctor’s secretary that these were normal. As I understand it this would vastly reduce the likelihood of peripheral neuropathy being the cause of the feeling in my feet. Over the past month or so I have been feeling really disproportionately tired and having what I can only describe Nas “phantom pain” as I can’t think of anything that has caused it. It’s like a very deep, dull ache in my left leg in the thigh, going up towards my ribs and I have had knee pain along with this. It feels like the leg isn’t quite mine, if that makes sense. The leg feels “heavy”. I’ve noticed a similar feeling in my right upper arm too, but not quite to the same level. I have also been having flashes of dizziness which come on seemingly at random and don’t seem to be affected or caused by movement or position and last a few seconds before they go. I’ve also been having headaches and generally just not feeling very “sharp” - multitasking abilities have faded to nothing and my memory is bloody awful. I can’t remember the last time I slept all night without waking up for a leak and this habit last throughout the day! I have not yet mentioned these to the doctors. My right foot feels wet half the time even when it’s dry. Captain Google (and previous family history) comes into play and things are beginning to point this way. Irritatingly I can’t help but feel like I’m being an idiot and self diagnosing, but on the flip side a lot of the things above seem to be listed as symptoms which has got me thinking about some old instances that I wrote off as migraines and never bothered anyone with. I figured it was a migraine aura across a few occasions where I have lost colour vision, had a pins and needles sensation in my tongue of all places and had blind spots and excruciating headache lasting a few hours. (Probably a bit silly not to have gotten this checked as it happened…). I hadn’t mentioned these to a GP as they seemed to be irrelevant headaches bit now with the other bits considered I am planning on making another GP appointment when I am able to. I guess what I am after is a sanity check, and suggestions on what to say to the doctor without coming across like I am trying to tell them what to do. Am I being ridiculous and imagining things and making links where there aren’t any? What should I do in this situation?
k33N Hi for a start stop looking on Google he’s a quack, he will wind you up and every little thing that happens to your body is a sign of this that or the other. Keep a diary of your symptoms and questions that you want to know, the only person that can tell you have MS is a neurologist and they are very busy, I got my second appointment in November for April and my third appointment in April 2020. I have been told that I have negative bands in my lumber puncture. You might not get an appointment straight away unless your GP thinks it needs investigating. Ask as many questions that you like here as I am sure that someone will know the answer. MS I have been told is as individual as you are so sometimes what is a problem for you isn’t for someone else. My neurologist said that my white matter changes in my brain could be from having migraines or my thyroid acting up. I hope that this helps, and welcome. Kay
I dont think your being ridiculous but the issue is you have too many things going on. The trouble is perhaps you are now looking for stuff?
Concentrate on the worse symptoms for you that actually impact your life.
My father had Lupus. I actually had a positive ana for lupus and the next one six weeks later was negative. exit lupus.
My first symptom ignored by doctor was going blind in one eye twice.
then my left leg and foot became weak and from knee down i could barely feel it. I lost it in 2006 couldnt get out of bed my leg wouldnt support me. Prior to that i did have odd things mostly left sided. Fatigue bad, heat intolerance, couldnt have a bath.
I was sent to neurologist who did tons of tests. said i had a neurological issues and it took 10 years to finally be told I had PPMS in february 2016. I just got on with things in between and my mantra ended up if it is MS it will finally show itself and it did in another positive VEP test, the second positive I had.
some of your issues could be down to your back and spine.
I think you have to just work out which is worse and go with that. Oh and leave google alone lol.
I did go to breakspeare clinic and paid to see Dr Munro who tested me for everything, and at the time she said to me I am giving you a differential diagnoses of MS and a co infection of Lymes. she was right on both accounts.
I am wondering if you are in a point of your life that you are having emotional issues perhaps?
Not saying you may not have MS, but reading your post you have so much stuff going on. My advise to you, is this. If you have a life and can work and do stuff, stop worrying about all the niggly things going on. Just enjoy your life. Eat well and leave google alone. go out enjoy and chill. Like i said if it is MS it will show itself. Right now too many non specific things going on.
this is my journey with MS it might help you understand how difficult it is to be diagnosed when we have non specific stuff going on.
I think it all hinges on how much the various ‘symptoms’ are affecting you. If the answer is not too much, then you could leave well alone as anything serious will make itself known over time. If the answer on the other hand is that it actually bothers you a lot, and you really want to find out if it’s something or nothing, then the right thing to do is see your GP in the first instance.
Kay and Crazy Chick are right, stop consulting Dr Google. He’d be struck off were he an MD. It’s far too easy to talk yourself into anything if you go by Google. If you want to know about MS, try the MS Trust or this site (the About MS tab). Anything else, start with the NHS.
I can understand that having a family history of autoimmune diseases, and already having psoriasis, makes you wonder about the various AI disorders. So with that in mind, you might be sensible to go and put your symptoms and fears in front of a GP and see if they think you should be referred to a neurologist (or another specialist).
If you choose to do this, then take with you some notes of what has happened to you and when. A sort of timeline. This will help you out immensely.
Free free to come back here for thoughts/opinions/ideas, etc.
Best of luck