Strange symptoms, MS As A Possibility

New diagnosis and before diagnosis
1

First up, thank you so much for accommodating me. You all share a condition which is incredibly difficult, and im currently in the position where it may be a possibility for me, too.

Im a 38-year-old man, a little underweight, 5’7ish. Ive got osteoporosis and often have excruciating pains as a result of this, so let me assure you that not a lot unsettles me, but the past several months certainly have.

I started getting pins and needles in my hands and feet, and weakness in my forearms. This was accompanied by malaise, some headache, blurred vision, dizziness, and strangely chilblains, itchy skin, frequent urination, and cold sores. Since bonfire night last year, this has come in waves that last for several days before disappearing for several more.

My GP sent me for all the usual tests - bloods, liver function, CT - nothing was exceptional whatsoever. His first thought was diabetes, and then he suspected trickle bleed of the brain - no dice. He then started to suspect it was something neurological.

He tells me not to jump to conclusions, but he referred me to a neurologist to delve deeper as it “seems to be nerve-related”.

I dont have “attacks” as such - more just weekly-to-ten-daily bouts of this rotten, shivery, dizzy illness with prickles in my hands and feet which can last several days before dissipating and i return to normal.

Ive noticed some of my symptoms are quite strange. Does anyone have, or have you ever had, similar symptoms in the earlier stage of your onset?

Id just like to be realistic about my prognosis and condition.

All my best as ever!

-Tommy

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There are a lot of different things that can go wrong with our bodies. I know it is difficult, but you will do better to wait and see what a neurologist has to say than research on Dr Google. MS for most of us was only diagnosed after many other conditions were eliminated. I am assuming you live in the U.K. It is unfortunate that COVID has left the Neurological services with a backlog because staff were deployed elsewhere and phone appointments did not allow physical examination.

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Thank you for your input, CRD!

I think id just like to align my expectations. Ive never experienced these sensations before - I’ve referred to it as “fire in my hands” and “shivers with no fever”, and even “the sensation my feet and hands are burning despite being cold”.

Nobody thus far has been able to give me a reasonable explanation for them and fewer people still have encountered anyone with similar symptoms.

MS was the only major condition i found with even remotely similar symptoms.

4

I think the range of possible symptoms of MS mean that it can appear to fit a lot of peoples illnesses. The diagnositic criteria for MS are quite complex and can only be made by a neurologist. I was unusual in going from a person with a random set of symptoms that could be put down to aging (who was hospitalised because I was suddenly repeatedly falling over) to a diagnosis of MS in a day of varied and extensive tests.
Not much comfort, but MS is not amenable to definitive self diagnosis.
Each person with MS has been likened to a snowflake, as we are all different.

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Have you been checked for coeliacs disease or considered food allergies?

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My symptoms are quite similar and I’m still trying to figure out what I have. Intermittent pins and needles, itching burning skin, weakness in limbs, numbness… headache and fatigue. I had a bout of it a year ago that resolved in 1.5 months and now it’s returned. All tests came back normal and MRIs of brain and spine came back clear.

Please keep me updated as you go through the diagnosis process. It’s so hard to stay calm and not jump to conclusions when you’re in limbo! Hope you get answers soon .

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Thank you all for your continued support and im sending my own in kind.

To answer a few questions -

Ive considered allergies, and even diabetes, but nothing obvious came of the tests.

Id considered my medications were maybe starting to affect me (codeine, naloxegol, linaclotide**), but the head nurse at my practice said it’s extremely unlikely. I also used to take alendronate for my osteoporosis but ive not had it in over a year.

(**not pleasant but my osteoporosis keeps me in a lot of pain so im given codeine to manage this, which heavily constipates me - the naloxegol and linaotide are to help with this. Last year i had a colonoscopy to check impaction but it was unremarkable. Im still not ruling out gut issues as some bizarre cause of these strange, wide-reaching symptoms.)

Ive since been given my neurology referral with an expected wait of up to 37 weeks (!) Because my CT scan showed no sign of stroke or bleed.

All i can do is wait, and keep my diary. My heart goes to you all as ever.

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Today i awoke very early with my arms fiery and paraesthetic, and the sensation of itchy crawling all over my body.

These sensations seem to be much worse at night, and when theyre gone, i normally get “wobbly hands” - undulating back and forward against my will.

It’s a very unsettling sensation. The doctors still seem in no rush to try anything new other than wait for neurology, which can be “as much as 37 weeks”. The NHS is wrung dry.

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No, your experience does not really chime with my own, I’m afraid. That all sounds most peculiar, and no wonder you’re fed up and worried. If it’s any consolation, it does sound as though the medics have satisfied themselves that there isn’t something really nasty going on, and I’m afraid that things do tend to get a bit leisurely, once that has happened!

An off-the-wall idea occurred to me: are you well nourished? I’m a bit lower in weight than I would like to be as well, so I do sympathise with the plight of those of us with modest appetites. I just wondered whether there was some sort of nutritional deficiency at play here, or even some sort of malabsorption issue associated with (perhaps?) some of the meds you’re on? At the very least, it might be worth spending a month or so really concentrating on nutrient-rich foods like meat, eggs, fish, vegetables, dairy, beans and pulses, full-fat dairy, fresh fruit and veg and cutting way back on the nutrient-poor filler foods like the sugar and flour that dominate most ultra-processed stuff? Those of us with small appetites often need to take care to make sure we don’t ‘waste’ a limited appetite - keep it for the really good stuff with lots of protein, minerals, vitamins etc! It can’t hurt to try, and it might be interesting to give it a go and see whether it makes any difference to how you feel? Apologies if this is what you do already!