I hope you don't mind me posting here. I don't have MS (as far as I know) but I have a huge list of weird symptoms and am having real trouble getting help from my GP.
My newest symptom is an area of painful skin over one shoulder blade and extending into my armpit on the same side. It feels like bad sunburn but the skin looks totally normal. I thought at first it could be shingles, but 8 days later no rash and the pain is still the same. It's constant but not agonising, doesn't stop me sleeping.
Apart from shingles, the thing that keeps coming up if I google is MS. I wouldn't be concerned about MS if this was my only symptom, but this is what else I have going on - apologies for the long list! I don't know how much of it might be relevant...
Nausea
Stomach aches
Indigestion
Weight loss
Twitching
Stiff, weak hands
Clumsiness
Blurred vision
Angular chelitis
Receding gums
Lower back pain
Pins and needles
Poor memory and concentration
Dizziness
Exhaustion
Anxiety
Zero libido
Early sudden menopause
I've had various blood tests and an endoscopy. All that it's revealed is low B12, positive ANA, borederline low iron, haematocrits and platelets, hiatus hernia.
Thank you if you've taken the time to read all this!
BI
Written by
BlackInk
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I understand your frustration and question. While MS will cause a lot of the symptoms on your list so do a few other neurological conditions. Hope you get a diagnosis and relief soon. Good luck.
If you have any concerns about whether it is ms or not, see an ms specialist, that way you will know one way or the other, let us know how you get on, Blessings Jimeka 🦋
MS hug??? Big misnomer-it’s no hug!! Painful and feels so different to everyone..I’m guessing of course!!
Anemia-I’ll throw out there too since I just was surprised by that! 😩😬
Thank you for your replies. I'm in the UK, struggling with these symptoms and GP doesn't seem to think there's anything wrong with me so I can't get a referral. My B12 and iron are low, but I haven't seen this 'sunburnt skin' feeling mentioned anywhere as a symptom of anaemia...
There is a Gloucestershire therapy centre, try ringing them or the ms society and see if they can direct you, it’s worth a try. They close at 5 today and not open again until Monday at 9am. Let us know what they say. Blessings Jimeka 01452419246 that’s the centre.
Firstly, it is important that I state that none of us here are doctors and you should not be asking for a diagnosis of your problems on internet forums. However, you've said that your blood tests for B12 and iron etc have shown low levels, but according to your other posts elsewhere in other HealthUnlocked forums you have been having B12 injections. You haven't said how old you are on this post but on one of your other posts in a different forum here you have said you are 45. You say you're going through a "sudden early menopause" - some of your symptoms may be due to this - has this early menopause been medically confirmed with appropriate tests?
Again on another post you've said you're vegetarian - many vegetarians who claim to "eat a healthy diet" are actually deficient in some nutrients because to be vegetarian and healthy requires more than just not eating meat. A vitamin B12 deficiency is relatively common with vegetarians who are not properly informed on how to ensure their diet is actually nutritionally adequate (and things such a angular chelitis can be a symptom of poor diet). It was 4 months ago that you posted about low B12 and iron in the IBS and Pernicious Anaemia forums and now in this MS one you've said that your levels are still low, so you clearly still need to be taking some supplements. And some people do need to maintain their Vit B12 levels at the high end or above the top of the reference range.
I'm not anti-vegetarian, and many people do very well as vegetarians, but there are quite a few vegetarians who list symptoms similar to yours which then disappear once they have been back on a "normal" and suitably varied diet for a reasonable period of time (Denise Minger is one of these). Everyone is different, and not everyone responds the same way to the various "dietary options" out there, especially with the varying effects different types of diets can have on our gut biome and how this varies across individuals. You've also posted about your son in the Ehlers-Danlos forums and was advised to take him to a specialist paediatrician with your concerns - did this happen? (are your children also on a vegetarian diet?).
Furthermore, some things such as lower back pain can simply be due to poor posture and lack of exercise and may have absolutely nothing to do with anything else you are having problems with.
I may come across as lacking sympathy for your situation, but I'm actually not, as I know full well how frustrating and depressing it can be to have all sorts of symptoms and no answers (been there and done that!). In many instances where someone has lots of symptoms there may be a seemingly unrelated "group" of them that are caused by one factor, ditto for another "group", and more than one treatment may be required. However, trying to get answers from Dr Google and places such as these forums is not very sensible and usually only increases someone's anxiety massively. How many other websites in addition to HealthUnlocked have you been seeking answers from? By all means do some research so you can ask intelligent questions of your doctor/s, but trying to self-diagnose your problems using the internet is fraught with risks.
If you don't feel you are getting what you need from your GP then find another one. It may be helpful for you to keep a proper symptom diary so that you can report accurately (with dates and degrees of severity) on what you are experiencing.
Thank you for taking the time to reply, but it's left me feeling quite upset. Yes, I've posted on a few groups over the past several months - because I'm fed up with feeling ill all the time and not getting anywhere. I never, ever used to feel ill, ever. This has all happened over the past couple of years. My son is a separate issue and I would prefer not to discuss him here.
Yes I am vegetarian. I have been since childhood and am now 45. BUT it is very easy to get optimum levels of B12 from a vegetarian diet. I eat well over the RDA of B12 in dairy (including daily live organic plain yoghurt), eggs and supplemented foods like yeast extract and breakfast cereal. I also eat lots of green veg, beans, pulses, lentils and dried fruit. Until recently I have always also taken a decent multivitamin most days.
I received a series of 5 x B12 injections in November after my B12 had been below range for a year (my GP surgery didn't tell me this at the time). My GP surgery do not follow NICE guidelines for treatment of non-diet-related B12 deficiency. They want to leave me 6 months with no treatment and then re-test B12. This goes against NICE guidelines. And in the meantime I still feel awful. My GP says that B12 deficiency is over-diagnosed and over-treated and that my symptoms are unlikely to be related. They do not agree that B12 deficiency can cause neurological problems.
Yes, early menopause has been diagnosed in so far as my periods stopped dead with no warning over 2 years ago, and hormone tests reflect this. So I am now in theory over 2 years past menopause. I believe most menopause symptoms are felt in the run-up to menopause?
I know that some of my 'symptoms' are just a part of normal life, being middle-aged etc. But I don't feel all this is normal.
I posted here on the MS forum because this burning skin thing is new and strange. I don't want to go back to the GP again if it's a common thing. Quick google only really brought up MS, so I thought I would ask here and see whether anyone had had something similar or could advise me. I am 100% definitely not imagining it. It started out of the blue and I fully expected to take off my clothes and see a raw rash from an irritation or something. But nothing. It still feels the same.
I don't think I have IBS. My bowels give me no trouble (upper stomach, indigestion and nausea do).
I apologise if I've been insensitive posting here, and will duck out now.
I am sorry if my reply to your post has left you feeling upset, but I remind you that I did say "I may come across as lacking sympathy for your situation, but I'm actually not, as I know full well how frustrating and depressing it can be to have all sorts of symptoms and no answers (been there and done that!)." You have not been "insensitive" by posting here, but over time I have seen on quite a few internet sites people posting all sorts of things, and trying to get other non-medical people to give them answers - and sometimes it's because they don't want to accept what their own doctor/s have told them - and before you get upset at that comment I am not saying that that is why you have been posting on Health Unlocked.
If you don't already have them, you need to get your actual results from you last few lots of blood tests - you are entitled to ask for them, and not just be told "it's all within normal ranges". If you have researched Vit B12 deficiency you will have come across a book by Pacholok and Stewart. If not, then get a copy and read it. As I wrote previously, some people have a higher need for B12 and the upper limit of the normal references range can be too low for them as individuals. There are also quite a few clinicians who believe that the reference ranges used in some countries for B12 are too low - and the UK is one of those countries. Sublingual methylcobalamin is a good alternative for injectable B12 and does not require a doctor's prescription (I can't remember if sublingual B12 works for those with PA as it isn't being "delivered" via the digestive system). Also - have you had your Vitamin D levels checked?
You said you don't think you have IBS, but I can't remember if you posted elsewhere whether you have tried a FODMAP diet to see if that helps with the other digestive issues, also no info on whether you have been tested for the bacteria which cause stomach ulcers (helicobacter pylori).
Above all else, my previous comment about keeping a symptom diary for a reasonable period of time plus finding another GP still stands, as I really think that is the best option for you to get some answers. And when you see a new GP it would be best not to complain about how the previous one didn't listen to you, otherwise the new one may well just "switch off" and not listen either. Good luck with it all.
I've seen my actual results from my blood tests. The local range for B12 is 180-1000 and mine was 166 just over a year ago, 160 6 months later and 122 the last time it was tested in October. GPs didn't mention this until it dropped to 122, and this was despite me taking a good quality liquid iron/B vitamin supplement for 6 months because I had been told that my ferritin was a bit on the low side. My ferritin sits at around 17 (range 10-300) regardless of what supplements I take.
I've read a lot about B12 deficiency, but GPs don't agree with any information I discuss with them. They don't even adhere to NICE treatment guidelines for B12 deficiency.
Everything else in my blood tests is within normal range, but I had a positive ANA result, the cause of which hasn't been identified.
Various other things (platelets, haematocrits red BCC) are right at the very bottom of normal range, MCH is right at the top.
Vit D hasn't been tested but thyroid (THS) has.
I haven't tried the low FODMAP diet and GP wasn't in the slightest interested in a symptoms diary or list. I can't decide whether it's sensible as it really restricts nutrients and I'm already low.
I've seen various GPs at the same practice as it's impossible to get an appointment with a specific GP.
Thanks again, apologies for all the negative come-backs. I'm just so tired of feeling like this all the time.
I’m in no position to diagnose but as you’ve mentioned B12 deficiency I wonder if much of your symptoms are related to that. I know that it can lead to severe symptoms and even irreversible nerve damage.
The previous poster mentioned IBS. If you do have IBS that could be another major piece of the puzzle. Gut health is hugely overlooked, even by medical professionals (even gastroenterologist, in my experience). If your gut is messed up it can lead to all sorts of deficiencies. “Leaky gut” has even been implicated in the development of autoimmune conditions as a whole.
Scrumbler - it's interesting how the many positive leads to information that might be of benefit or interest to BlackInk which I gave in both of my posts which responded to her seemed to have been overlooked by you when you say that you "cringed" on reading my posts. For example, I wrote about one of the best books around on B12, provided links to FODMAP information which is comparatively new in the dietary/IBS/gut problems area, confirmed that reference range levels used for B12 in the UK are low compared to those used in many other countries, gave information on the best type of B12 to take and that it is a good alternative to injections (which require a doctor's prescription), advised that if she didn't already have them she is ENTITLED to get her actual blood test results (and to not be fobbed off with "non-replies" from her Dr), gave encouragement to find a GP who WILL listen, and a recommendation to keep a comprehensive symptoms diary so that it's not all just "recollections" but a contemporaneous record of what happens symptom-wise and when. Oh - and I asked if her Vit D3 had been checked - as deficiency of this can be quite a frequent problem in low sun-exposure countries well away from the equator (and BlackInk said she is in the UK - where Vit D deficiency is an issue).
While everyone is entitled to read what they want to read and ignore what they choose to ignore, it's a pity when you doing so with my posts has resulted in a somewhat distorted view of them (and your insinuation that I was being unkind), when those posts did offer quite a few solid starting points to relevant information which could be followed up further if BlackInk wanted to do so. You are correct in noting that these forums offer support, but they also have a role to play where members can offer evidence-based information, and encourage people to seek advice from qualified suitably health practitioners - including second opinions if/as appropriate or necessary. Nothing I wrote goes against those three principles.
I have burning skin in arms sometimes legs shoulders and sometimes chest area, I get hot flashes, shaky feelings (inside) sleep issues, nausea with gagging especially if I havent slept much, sometimes twitching muscles on medication for 2 and half weeks only so far. My doctor said it’s GAD, I had anxiety 6 yrs ago and some of these symptoms like nausea and burning skin, but this time the symptoms are more. It affects my stomach when I’ve been gagging as well. Not nice at all 😔
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