Terrified I have MS

[mrstobe123]

Last month I started experiencing burning sensations in my thighs which I thought could be down to chaffing etc but no rash. As it didn't settle down I went to the doctors who didn't seem too concerned but sent me for blood tests which all came back normal and prescribed me antiviral tablets in case it was the start of shingles however it has been nearly 4 weeks now and the sensations are still here and I am now experiencing it in my arms too constantly along with occasional aches and pains, tingling, twitching, tired muscles, pain in fingers and wrists.
I went back to the doctors who said they have no idea what is causing this and referred me to neurology and after googling (which I know you shouldn't) I have convinced myself I have MS.
I do suffer with anxiety which doesn't help but I am so worked up I can't think about anything else.
Does this sound like MS or just anxiety playing tricks on me, it seems the more symptoms I read about the more I think I'm experiencing, I can't tell what's happening anymore. All my senses are extremely heightened atm I feel every little thing and then focus on it for hours. From the moment I wake up I think can I still feel the sensations then for the rest of the day I can't think about anything else. Its ruining my life.
I think I'm just looking for advice and a handhold really.
Any similar experiences would be really appreciated.

I’ve got similar symptoms. Initially I was getting pins and needles in my hands, arms, legs and feet. That’s lessened but I now getting burning sensations instead and have periods of feeling exhausted.
My bloods didn’t show anything.
I started HRT a couple of weeks ago (I’m 46) to see if that helps.

Im going back to my GP this week to discuss it further.

How old are out? My friend experienced similar (largely tingling of one side of the face) in perimenopause.

How old are *you, sorry

@Skiphopbump did you experience the symptoms in different parts of your body at the same time?

@Bearpawk I'm only 29 so don't think it could be hormone related?

@mrstobe123 at the moment both legs are tingling, my right thigh is burning and my back is cramping in both sides. The pins and needles in my arms/hands usually just happens one side at a time.

@Skiphopbump that's very similar to me! Have the doctors sent you for any testing or just see how HRT goes first? It's really worrying me that something serious is going on.

I’m having abdominal issues post gallbladder removal sorting that has been priority.
I’ve had an abdominal scan which didn’t show any complications.

I had an appointment to discuss my pins and needles and had a blood test which was clear.
When I go back this week I’ll properly discuss the whole picture.

The HRT was prescribed by the practice nurse so not something I’ve discussed with the GP.

bump

Thing is, it may or may not be MS. Only tests will confirm it as MS is different in every person affected.

I have MS and am able to continue in relative normality. It was diagnosed 8 years ago now. Whilst my walking is limited when I am sitting most people wouldn't know. I still work in the same job.

I do remember how terrifying being diagnosed was though and know some of what you are going through.

Take care

@Pericombobulations thanks for your reply and sorry to hear that. can I ask how you were diagnosed and what symptoms you experienced that lead to being diagnosed?

Both anxiety and MS cause neurological symptoms. I've had health anxiety and went to the doctor with a long list of neurological symptoms such as feeling of hot water being poured on my leg, tingling, pins and needles, muscle and nerve twitching, numbness on my face. The doctor me he was certain this wasn't MS - it was affecting too many areas of my body (MS symptoms are often localised to begin with). He said in his 30 years as a doctor he'd had only a few patients with MS but hundreds who thought they had MS! It was simply the anxiety affecting the nervous system and causing similar symptoms.
There are also other conditions that cause MS type symptoms - B12 deficiency is one of them.

@mrstobe123 I had pins and needles in opposite sides of my body (right hand and left leg), but even when I first saw a neurologist, they said that it could be a lot of things from anxiety onwards. This list was a page of A4 so you may have anything.

There is no one symptom that all MS patients have, its more like some will have this symptom, some will have that symptom and some may have both, and others none of those symptoms. Without an MRI or lumber puncture (which I didnt have) will confirm it.

My DD was diagnosed with MS a year ago. Shes18 now, but since she was 13 there's been unexplained issues. This ranged from very severe migraines, unexplained stabbing pain mainly in her shoulder, neck pain, fatigue, clumsiness, fainting and more. She had every test going - EEG, ECG, MRI (but not high contrast) and bloods. We saw a chiropractor, physio, she had acupuncture.
The pain and migraines eased somewhat after time, though I also think she got used to living with a level of pain. Now any of these could be coincidental- it is tempting to put any niggle and assign it to one thing.
Then February last year she said her arm was tingling and then numb. Then it affected her leg. She called 111 and they told her to go to A&E. Long story short: after a high contrast MRI which showed lesions on her brain and spine, blood tests, and crucially a lumber puncture it was confirmed she had MS. The neurologist said as soon as she saw the MRI that it was likely to be MS but as there's no definitive test but eliminating everything else it took two months for the diagnosis.
I don't think blood tests on their own will say much. It also depends what they test for. My daughter must have had at least five or six over the two months, but they need in in conjuring other tests (like a lumbar puncture).
Symptoms tend to come and go. Her tingling and numbness resolved (though not back to 100%). The 'multiple' part of MS mean several episodes.

Sounds to me like you might have a trapped nerve or disc in your back!

MS is a bitch to get diagnosed !

There are a million reasons for your symptoms is there a particular reason why you jumped straight to MS?

Never ever use Dr Google! Even the normal common cold will be the plague according to Dr Google

@SallyWD how did your symptoms improve and were they constant? I've been experiencing these every single day since they first occurred, legs about a month ago and arms two weeks ago. B12 came back normal and so did iron, I wish it was something as simple as that. I am worried my anxiety is taking over and won't let me rest until I find an answer.

@mondaytosunday I'm so sorry to hear about your daughter, thank you for your comments. The doctors have referred me to neurology so I'm nervous about that.

@nervousweddingguest I honestly hope it something that simple! How can they be diagnosed/ treated? I made a huge mistake googling as MS comes up each time so I think that's why I've convinced myself I have it and because no one else has really said what else it could be! I'm now nervous I won't get many answers from neurology

@mrstobe123 .. its a long road.. it took them 6 months to diagnose my disc issues in my back... 2 years down the line and i am still not much further forward.

October last year, after a brief stay in hospital it was decided i may or may not have MS. I've had tests, scans other stuff done and it depends on the consultant i see at the time.

I've been told the waiting times to see the specialist is 21 months! so at the moment i am in the 'have it' bracket until such a point when someone definatively says 'i don't have it'.

it can take years to diagnose and in lots of cases is mis-diagnosed!

My leg and arm tingles went away when I started getting treatment for severe hypothyroidism. Have you had your thyroid tested recently?

@nervousweddingguest oh gosh that sounds awful, sorry to hear that! Have your symptoms ever stopped? Could an osteopath help diagnose a trapped nerve or slipped disc?

@DoAWheelie Yes I had bloods recently and everything came back normal which is reassuring I suppose but also doesn't help work out what is going on with me!

i am in the NHS hamster wheel... it will take as long as it takes... no point worrying about it... if i have MS i have it! i will make the most of what i've got until i reach a point that i can't.

for reference my mum had MS my sister has it, I've grown up surrounded by it, it will be what it will be

I can't remember exactly but I had those symptoms for at least a few months (every day) on several different occasions. I forgot to mention I was frequently feeling dizzy and off balance too (another symptom of MS). When my doctor told me it was anxiety, I couldn't believe I was anxious. I knew what anxiety was - I suffered with it in the past but I felt OK then (or so I thought). It was only afterwards that I realised I had actually been stressed. Nothing major - just life as a really busy working mum. I'd been rushing around all the time trying to juggle too many things, constantly rushing from one place to the next. I think my body was in a state of permanent tension and I hadn't even realised.
What's really interesting is, I had the worst period of symptoms in early 2020 so just before Covid. As soon as lockdown started, life slowed down dramatically and my symptoms all disappeared! I was no longer rushing around. I was living life at a much slower pace. I'm certain that it was stress and once the stress disappeared, so did my synptoms.

@SallyWD I just felt relief reading your comment, that's exactly how I feel. I don't think I'm particularly anxious atm (in the past I have suffered quite badly) but maybe it's a way of my body telling me to stop rushing around all the time, it's like my mind is never calm always thinking of the next thing to be done so you've given me hope thank you! Have you had any symptoms since?

Have you had B12/folic acid tested?
Could it be a vitamin/mineral issue not absorbing nutrients post cholecystectomy?

I have MS, and to be honest I don't think your symptoms are ringing any massive alarms for me (although of course it's impossible to rule out without tests). Because of the way the disease works, generally these sorts of symptoms in MS will affect single parts of the body each time. For example, you might get a lesion in the part of your brain that affects your leg and get tingling there, but it's unusual to develop symptoms all at once that affect so many areas. I would be surprised if your symptoms were MS.

However, I well know how terrifying it is to be where you are at the moment, so full sympathy on that. If you have the funds for it, a private brain MRI will give you faster peace of mind on the MS front.

Hi,
Did you ask for a paper copy of your bloods rather than just take their word that all was normal? (you are entitled to this).

The print out gives your level as well as the expected range which can help you to interpret them. Look out for your B12 being very low in range - even if it is beyond the minimum level. If it is low ask your doctor about supplementation or B12 injections. Many people believe the low range is too low and that people can experience symptoms at that level.

@ammpersand thank you for your reply, I don’t know much about the disease so really appreciate your explanations. The sensations started in my legs first then about two weeks later I could feel it in my arms, some days in both others just my left, is that unlikely how MS affects your body? Money is tight but I will look into a private MRI and see if that’s something I could afford whilst I wait for my neurology referral.

@Winter2020 my doctors went through my results with me and apparently my B12 was right in the middle but I will ask for further details, thank you