My symptoms are the same as MS but other things too...scared

[mandmsmummy]

Have ankylosing spondylitis (autoimmune disease) and lots of new symptoms.
Mainly tingling feeling on my left side of my face, eye, cheek, head.
Brain fog
Fatigue
All the things that could be other stuff and I'm convinced I'm perimenopausall too.
It's the tingling face that frightens me most, it's new and I'm worried as it is a symptom of MS. Maybe they misdiagnosed me with AS?
I am waiting for an appt for a head mri but can't come soon enough.
Any thoughts please x

Can I ask? Any coeliac in the family? What's your gut like? Allergies?

Hi Macaroon
Not as far as I know.
My tummy has been up and down since March, had a bout of diarrhea after taking anti imflammatories for nine weeks which settled down but I never seem to have the same bowel movements!
X

I have all those (plus a bit of left side weakness) and it's looking like it might mostly all be coming from arthritis in my neck. I panicked myself into being really quite ill this time last year though as everything on the list of MS symptoms described me, and the more I worried, the worse it got .

Facial tingling could be coming from teeth though - how are your wisdom teeth?

I had the tingling one side of face and it took me to the GP. I was then referred to a Neurologist for suspected MS amongst other things. It turned out that mine was hormone related - I was perimenopausal and it occurred a couple of days a month accompanied (sometimes) with headaches. Since I was ttc I charted my cycle and I could see that it was due to the drop in oestrogen just prior to ovulation. The closer to meno I got the worse the symptoms. I had suffered from time to time with migraines in the past and that clinched the diagnosis.

When the GP did a numbness test my sensitivities were all intact. It was hard to describe, but the tingling was in just the very outer layer of skin - did not affect inside my cheek for instance. Mine was left side too. Brain fog is common in perimenopause and so is fatigue.

However, the power of the mind is incredible and by the time I saw the neurologist I was experiencing tingling in my arms and various parts of my body. I also had a freaky combination of major stressful life events all happening at once!

Thanks all, these are really interesting thoughts.

leaping my ankylosing spondylitis is an imflammatory arthritis and my neck was my thought. My rheumatologist refused my tingling feeling would be that but my neck is very clicky.

enuff I'm convinced I am perimenopausall and I have been getting headaches too. I also agree with you about the sensation being on he he outside of my skin and not inside.

Really appreciate your replies, thank you all xx

back2two I've heard about fibromyalgia and I know it's linked with my condition. Do you have it? Could you tell me more? X

Have you had thyroid check and know the results (ie post here)? And have they tested antibodies?

Recently needed an upping in my meds but a physio had suggested fibromyalgia to me - dr thinks all thyroid related which I tend to agree with. But very similar symptoms.

Auto immune things can be linked plus thyroid issues can begin when menopausal

I've got RA which is similar to AS. Fatigue and ' brain fog' are symptoms of RA so might be the same for AS?

I have also had trigeminal neuralgia in the past, that's caused pain in my eye, cheek, ear, nose etc as well as loss of feeling and tingling so maybe something like that?

Try not to panic!

Have you considered candida overgrowth? many of your symptoms are symptoms of it. If it is candida, its a painful and expensive treatment of diet, antifungals and probiotics, but you can be symptom free eventually!

Painful as in a horribly limited diet, not actually physically painful!

Hi op, I was asking about gut issues for the same reason other posters here are mentioning diet as a control for their symptoms, so bear with me a moment even if this sounds off the wall.

For a lot of people (not everybody of course), the symptoms, autoimmune issues, pain etc may either be caused by, or made worse by diets containing lots of irritants - specifically I'm taking about grains (all grains, but especially gluten containing ones). IMO the way we process those grains now make them more irritant and inflammatory to our guts (and then our immune system, as a damaged gut has all sorts of knock on effects to your body). In tribal traditions, the grains that were eaten were soaked and sprouted or fermented, and that broke down a lot of the natural toxins in the grains (these toxins are basically insecticides, as the grain is trying to protect itself agains being eaten). The diet we eat today is incredibly high in processed grain foods.

You might want to consider looking into a grain exclusion diet (for a month or 6 weeks). Either that would hugely improve your symptoms (as it did with mine, a number of autoimmune conditions and a number of other problems that were probably at least partly autoimmune), or not... But you won't know unless you give it a try, and you need to be really strict for that month, to give yourself a clear answer.

If you are interested, a really good place to start is Marks Daily Apple blog (free!), it has a large searchable archive and science links and studies explained clearly and simply. Whole30 is worth googling, as is Paleo, or Primal- all the recipes will be completely grain free.

Re your comment on anti inflammatory over the counter medication - not great for your gut and may well make your overall situation worse in the long term (and I speak as someone who used to take a lot of them)... So much better, if you are able, to try and find the trigger/cause that means you don't need them (or need less of them).

Obviously as I said before, diet is not going to be the answer for everyone but I think it's worth a go, if only to rule out that possibility.

Oh and the tingling face pain thing sounds like it could be trigeminal neuralgia (TN), a condition which may or may not be autoimmune, has a relationship with other autoimmune conditions such as ms and coeliac... Mine (which had graduated on to quite nasty stabbing pains as well as the tingling), has disappeared on my grain free diet (quite a few years now). I have had the tingling return very mildly if I've slipped off the diet for a few days, so I'm very strict with it now.

Does your AS affect your neck? I'm just wondering if you've got some pinched nerves/disc problems. Neuropathy is not uncommon with inflammatory types of arthritis either.

It's positive that they're sending you for a head scan though. Hope the wait isn't too painful!

rawcoconut they've ruled out trigeminal neuralgia as they said it's really painful which I don't have.

myfairyking it can affect my neck although they've never scanned my neck so unless they see it they won't diagnose it. That's my thought though but rheumy said it's not linked to AS. I'm not convinced that's true

Get your vitamin B12 tested and if it's under 500, get it raised, either through injections from the doc or by taking sub lingual lozenges (Jarrow is a good make).

I understand your worries, but it could be something as simple as that.

Low vitamin b12 would cause these symptoms? X

B12 injections are helping me & I have terrible pins & needles in my hands & feet (& numb bits)

Mines in my head and face, tingling feeling and my eye feels hot sometimes x

That's very similar to may hands & feet

B12 can't hurt, anyway - it's very cheap & it can help - so most GPs will try it, if it's even possible

I had similar soon after ds1 was born.

I got checked out by the optician and dentist who couldn't find the cause and referred me to a neurologist. She wanted me to have an MRI before I even met her. I had convinced myself that I had a life limiting illness.

The neurologist examined me but still wasn't sure of the cause, nothing had shown on the MRI. She ordered blood tests for everything under the sun. It turned out that I have autoimmune hypothyroidism. The cause of the facial tingling/numbness ha never been found and 7 years later it's just the same, but the other symptoms that I had an had put down to being a busy new mum in winter and not eating the best diet (sluggish bowels, tiredness, achiness, dry skin) all improved once I started thyroxine.

Fingers crossed it's similar for you OP.

Thanks muchtoomuchtodo
So it could be just another symptom of my autoimmune disease...x

Got my appt my scan is 19th nov! Can't get anything sooner x

Mandmsmummy - I had the same symptoms three years ago. The doctors were so convinced that it was MS that I had fortnightly scans for a while, because they couldn't find lesions, and the hospital presented a special case to NICE so that I could start MS drugs without having lesions. I got taught how to inject into my stomach and legs, and the first chemical disposal containers and injections were dropped off.

Then NICE ruled out meds without an accurate scan. By this point, I'd had fortnightly scans for nearly 6 months, and nothing was showing other than the symptoms.

They rescinded the MS diagnosis and replaced it with fibromyalgia. Unfortunately, fibromyalgia is a catch-all diagnosis for when they don't really know what is wrong. It exists, people with it are suffering, but there is no cure. Typically, they prescribe an antidepressant to help with sleeping, and painkillers. I've tried Amitryptilin, citalopram, liquid morphine, morphine patches, gabapentin, lyrica, tramadol, co-codamol, naproxen, and probably various others that I can't remember. I've been seen by the pain clinic, the sleep clinic, neurologists, rheumatologists...

Luckily, my consultant hasn't given up, and I'm now being monitored by a London hospital who are determined to remove the fibromyalgia diagnosis and replace it with the actual issue. I'm glad, because while I like having a diagnosis, it means that whenever I get a new symptom, I'm told it's the fibro and there is nothing they can do.

The tests for MS aren't bad. They may want to repeat it a few times to monitor for changes, dependant on your age, but if you're over 30 than they tend to believe that you'd have visible lesions if you had it. If you do have it, there are really good treatments now. I pass out at vaccinations, but was getting used to practising injecting things. If you vary the injection sites like they teach you, there is no scar tissue. They are very organised at getting you medication and monitoring you, and MS clinics are some of the best organised clinics that I've ever been too. There is a lot of mental support, too.

If you don't, you'll probably find that they do more scans to look for different types of arthritis, which can cause similar symptoms. Then they'll probably tell you it might be fibro, and prescribe any meds that they feel might help. It's a bit of a fight to get these changed, because eventually you hit the top of the painkiller chain, and nothing lower than morphine will work any more. I have a morphine drip every now and again, but to get to this point was a fight.

Don't worry. There are days when I wish it had been MS, so that I knew what to expect and would get support and treatment. Either way, though, you'll be okay.

(As an aside, I had a lot more symptoms than you've listed - my body is physically ruined by my mum taking abortion tablets regularly during pregnancy. Your experience will probably be a lot better than mine!)