prediagnosis limbo


I can’t believe I am writing this but here goes, I found out today I have been referred to a neurologist due to symptoms which could theoretically be MS-related. I knew I had been referred by my GP for what he called " a second opinion" but not for MS. I am flapping between not being able to get my head around this, to complete denial. I feel one extreme to another, like I really shouldn’t be worrying as my symptoms are mild or could be unrelated to MS, MS just needs to be ruled out - or should I be concerned? what if its not ruled out … I don’t mean to upset anyone but I have known two friends with MS, one is now in a hospice and fed through a tube, the other still lives independently but had to take early retirement. I do feel scared, too scared to tell my husband about the referral.

I’m 46 and have been back and forth to my GP since January 2015 with a few problems which I did not initially think were related at all. First, my legs gave way at the knees, I thought this to be a faint, but it happened a few times and I realised it was not really like a faint, more like a sudden loss of strength at the knees. It seemed to coincide with tiredness and a headache. Secondly, I started feeling exhausted from the moment I woke in the morning, it felt like I had a sleeping sickness, I would sleep for 16 hours a day and still feel tired. I started to feel a similar weakness in my arms if I was tired and say for eg using the phone, I’d suddenly feel like there was no strength in my arms. When I saw my GP he did some blood tests, he found a low ferritin level. I was treated for anaemia. He signed me off for a month and told me to have complete rest as he thought I had postviral fatigue or chronic fatigue (I had a virus for a month in November, then an infected mosquito bite, followed by 3 UTIs). I felt once I was on the iron supplements a few weeks I was slowly becoming less tired but I noticed an odd sensation on the top of my left foot like an electric shock, and tingling, I put this down to some poor fitting footwear as it would come and go but was very noticeable in bed at night. A couple of weeks later I began to get a sudden sharp pain running through my left thumb whenever I turned the kitchen taps on did a grasp and turn motion, which then would immediately go tingly with pins and needles/numbness lasting only moments. My right thumb also became affected but never to the same extent. I actually put this down to RSI due to overusing my tablet. One morning I woke up with an odd sensation on the left side of my face, like a tingling numb pain, I liken this to the start of a cold sore. It spread across my cheek and temple and became quite painful and numb at the same time, I thought it must be some weird migraine as I do get migraines but usually with aura. I went back to my GP for a follow up and mentioned these strange tingly numb painful sensations in my foot and he examined it, he asked me did I have these sensations elsewhere and he did more blood tests. I was recalled as the blood tests revealed my Vitamin D levels to be woefully low (19). He signed me off for 8 weeks. He thought these what he called “neurological symptoms” were consistent with the vitamin deficiency and he said these symptoms can also be viral-related, as some viruses affect the peripheral nerves in the hands and feet - thats when he said he was referring me for “a second opinion”. I have been on Vitamin D and iron for a month and do feel alot less tired though not back to normal yet, but the tingly feeling still is there on the top of my left foot, and at times slight tingly feelings in all toes and fingers but very subtle, it does come and go, some days it is not there at all, some days it is really annoying

This must sound like a big long whinge. I am truly sorry for that, I just don’t know what to do. My GP is not particularly easy to talk to. . I guess no-one can say whether these symptoms are consistent with MS as from what I have learned, symptoms can be very individual to each person. I’d be interested to hear whether anyone else has had one-sided symptoms - mine appear to be mainly left-sided, or whether anyone has progressed from a diagnosis of chronic fatigue/vitamin D deficiency to MS diagnosis. :slight_smile:

Hi Marieanne, have you been referred to a neuro? If not, ask your GP to refer you because a neuro is the only person that could give you a diagnosis.

It’s impossible to say if your symptoms are MS related, they could also apply to many other things. If you saw a neuro they’d ask you to have different tests to enable them to come up with a diagnosis, this can sometimes take a very long time & isn’t as simple as it sounds, so try to be patient. If indeed it is MS, you could experience the weird feelings anywhere on the body, not always on the same side. But don’t jump ahead…see the neuro first & see what they have to say.

Good luck

Rosina x

Hi Rosina

Yes I have been referred to a neurologist, I knew I had been referred for a second opinion to neurology a few weeks ago but not until today did my GP mention this referral was for MS-like symptoms.

Thanks for replying - I do feel like I am in a panic since seeing my GP today.