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Newbie needing advice

Hi all,

I’m new to all of this and still waiting for a diagnosis.

About 18 months ago, I had what i could only describe as an altered sensation in my saddle area. Sitting on the loo would cause pain, as well as the sofa and also having the material of my underwear next to my skin was horrendous. It lasted a few days and then normal sensation returned. It has happened a couple of times since but only lasted about 24 hours or so. The GP sent me for an urgent MRI, as they thought it may have been Cauda Equina - very thankfully it wasn’t, however, nothing happened from this, there were no other investigations carried out.

More recently, perhaps for the last 5-6 weeks, I have been having pins/needles in my arms, hands, lower legs and feet.

I also get spasms/cramps in my toes and sole of my foot most days.

I have explained these new symptoms to my GP and they have asked me to keep a diary and are weaning me off my anti-depressants (which have taken for almost 12 months) as parathesia can be a side effect of the medication.

I’m feeling quite scared, but also feel like it’s all in my mind, that sounds ridiculous I know.

What I’m looking for really is a bit of validation and other peoples experiences, if they have had similar symptoms to what I am displaying.

Many thanks

Mrs K

Hi Mrs K - I hope you find the root cause to your worries - have they performed a Lumbar puncture (spinal tap)? this seems to be what they look for something called Oligoclonal bands - they then should do blood test for MS mimickers as there are many.

I am experiencing tremendous head pressure and blocked left ear and nostril odd I know however the neurologist has said MS however also said not sure! so I shall follow this post to see if anyone else has any experience of your symptoms or mine.

All the very best

Mrs K

try magnesium oil for your foot cramps (massage it in).

it’s a magic bullet!

no, it’s not ‘all in the mind’ - what you’re experiencing is real - what you describe are common features of m.s. - but not totally exclusive to m.s. - possibly coming off the anti-d’s may be causing the pins and needles.

looks as if the g p is taking a ‘wait and see’ approach - I would guess if symptoms persist you’ll have an MRI scan and this should give a good idea if it’s m.s.

Hello Mrs K

There are many diseases that resemble MS in symptoms. So making an assumption that you need to be checked for MS is the wrong way round.

Generally, you take your symptoms to a doctor who considers the symptoms and then which area of medicine could be causing those symptoms. Then they could refer you to a specialist if that seems warranted.

What your GP has done is to initially consider cauda equina (as you say, thankfully it was not!). Subsequently, your GP has taken you seriously and wants to wean you off a drug that could reasonably be causing your symptoms. Meanwhile to start a diary of your symptoms. This is frequently something members of this forum suggest, keeping a diary of what symptoms are affecting you, the onset of a given symptom, how long it lasts and whether it improves, completely or partially.

If you do stop the drug that could be causing your neuropathic type symptoms, but the symptoms remain, that is the point at which you’d expect your doctor to refer you to a neurologist. A neurologist would look at your symptoms, take a history from you (which is one reason for keeping a diary), examine you and consider what might be causing the symptoms. If it’s deemed to be neurological, then referral for tests would be made.

Trying to match your symptoms with any people with MS have experienced is a bit pointless because our symptoms range all over the place. Yes, many of us have experienced numbness and pins & needles, but for varying lengths of time. Given that other diagnoses also include these symptoms, you could consider following your GPs advice first, before trying to fit your symptoms into such a variable diagnosis like MS.

I’m sorry if this appears hard hearted. It’s not intended to be. I am sympathetic to your situation. It’s difficult to get the ‘worst case scenario’ from your brain, or to put a diagnosis from your considerations once it’s taken root. But honestly, the chances of it being MS are remote. And even if it were, in the current (Covid) climate, a referral to a neurologist is likely to take months. If you can try to put MS away from your thoughts in the short term, concentrate on stopping the antidepressants and then see where you are, it can only help.

Best of luck.

Sue

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I’ll tell you the symptoms you may encounter; my father also suffered from this disease. But I should warn you that I am not an expert and you should see a doctor. Symptoms: painful thickening in the form of bumps in the anus in external hemorrhoids;