Multiple Sclerosis?

[HelpFreakingOut]

I've NC for this - the NC is apt!

I've been struggling with pins and needles in my extremities when I'm horizontal (whether awake or asleep) for a couple of months. As I've got really low blood pressure, I've always just assumed that it's down to poor circulation or similar. Last night, though, I kept waking up with the numbness and it was really annoying, so this morning I Googled (I know! Foolish!) to see if there was anything I could do to stop it.

The first result that came up was for symptoms of M.S. This hadn't even crossed my mind except when I saw some of the other symptoms...

I've got a GP appointment next week because I've had pain at the front of my neck (where my Adam's apple would be, if I had one) and it's been there for coming up to 3 weeks. It hurts all the time, but most especially when I swallow, which I'm finding quite difficult.

I was also diagnosed with moderate hearing loss in December.

On top of that, there are 3-4 other symptoms that I have which I have been attributing to my M.E/C.F.S. (diagnosed 15 years ago, fine from 2004-2014 and then relapsed). These are things like joint pain, muscle aching, fatigue (obvs), memory issues.

I'm really worried now. All the above issues have been so separate in my head, but now that I've seen them in black and white all bundled together under one life-changing heading, I can't stop thinking about it.

Does anyone have any advice on how I should broach this with the GP when I see them next week for my throat? Does anyone have any "don't worry it'll be fine" stories about being diagnosed? Or, even better, you thought it was M.S. but turns out it was nothing like it!?!

Help...

Anyone? 😣

See the doc. There are similarities between MS and ME symptoms and you need a medic to untangle this for you. And anxiety (understandable) can worsen symptoms. Hope your GP can help you with this.

I used to have a lot of symptoms like this and worried about MS but ended up getting put down to fibromyalgia. If you google cfs or fibromyalgia and pins and needles you will find that it can be quite common in these conditions too.

sounds like thyroid issues

I have been suffering from all these symptoms for some time. They can be attributed to a number of things. I've had a brain scan and this came back totally normal.

This is the problem, it could be so many things. It could be Iron deficiency, vitamin 12 deficiency, Folate deficiency, the menopause, anxiety (even if you don't think you are), hypotheroidism, lyme disease and a number of other conditions.

I'm still not totally certain what causes my issues, so still trying to eliminate one after the other. I think my issue is VitB12 deficiency but only time will tell.

Don't panic as this will make it worse. Go to your GP and request investigations.

Thanks for the replies, all - it's made me feel better. I've had recent blood tests done (for something else) but all the results came back "within the normal ranges" so I don't think hypothyroidism is it.

Would fibromyalgia/lyme disease show up in blood tests?

The numnbness/pins and needles woke me up a couple of times again last night, and the swallowing/throat issue isn't any better today than its been over the last 2.5 weeks.

My manager is in the loop because of the appointment I've got scheduled, and she thinks I should call the GP back and mention the pins and needles to see if they'll see me today. I'm worried that will make them think I'm a hypochondriac and less likely to take me seriously when they do see me (my surgery has loads of GPs and it's really hit and miss in terms of the help you get - really dependent on who you see and what mood they're in!)

The problem is that blood test for a number of these illnesses are not always reliable. This is the case for B12 deficiency, and indeed, NICE (and other guidelines) recommend that patients are treated presenting with symptoms indicating of the deficiency even if blood results are ok as this test will look at the total, that is active and inactive forms, when the issue is that your body can't used most of it.

Test for Lyme disease is also known to be inaccurate so a diagnosis is difficult. I would suggest you do your research on these conditions and go armed with it to discuss with your GP.

Don’t panic OP, I know it is worrying but your symptoms could be due to a number of different things. MS can take a long time to get a confirmed diagnosis, lots of other conditions will be ruled out by a Neurologist. The first port of call is to see your GP, should he refer you, a Neurologist will perform an examination and then perhaps order MRI scan. MS can often be diagnosed by MRI. I have RRMS and have been through the process. It probably won’t be MS, your symptoms don’t sound typical to me, but I am not a Neurologist. Good luck and try not to worry, MS isn’t something I would have chosen but you can still have a good life, it’s about staying positive and making adjustments to make life as easy as possible.

Hi op, just wanted to tell you that even if it is MS, it doesn't have to be the end if the world. I was diagnosed with RRMS 19 years ago after visual, balance and sensory problems and my MS is behaving 'benignly' 19 years later and I've never had any medication for it. I won't say I'm symptom free because I'm not but it can be something you live with in the same way it lives with you. I firmly believe that there are as many different types of MS as there are people who have it, although as a pp said, I wonder if your issue may be thyroid related especially with the front of neck symptom. Definitely see your gp and go from there. Just wanted to reassure you that MS isn't a one side fits all and that even if it is MS, you could be fine long term

sounds like ME symptoms to me.keep us posted.

Thanks, all. You've helped massively. Will see how I get on next week with the doctors and keep you posted.

I have the same symptoms, started about 5 years ago. I've just been diagnosed with Fybro. It's shit but obviously not as bad as MS. Go to the docs but be prepared for many appointments before you find out what it is.
Good luck

See if you can get an ultrasound to check your thyroid. I’m hypothyroid and have your symptoms and more besides, the symptoms come on for a time then disappear for a time. Not MS - brain and spine MRI completely clear 12 years after initial symptoms.