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Advice on symptoms please - Awaiting Neurology Appt

Hi,

My name is Octavia, I am 29 years old and currently waiting to see a neurologist as my GP thinks I could have MS. Just wanting to say hello, and tell you all my story to see what you think, any advice or support would be greatly appreciated. I have complied a list of symptoms I have experienced some more frequently than others. Ill type them up onto here if thats ok. (I may well forget things so end up adding on or something, sorry in advance)

First symptoms/noticeable signs appeared a few years ago now.

I had an MRI of my pituitary gland in 2015 (maybe 2014 I cant remember) and it showed a small lesion which they think is a prolactinoma, however although I have the classic symptoms of it, my prolactin levels have always remained normal. My endocrinologist things its not a prolactinoma and possibly something else. I see my endocrinologist again in June, my neurologist appt is currently set for saturday 22nd july - apparently thats the soonest urgent appt slot available, although I am checking for cancellation slots.

Bad balance - I bash myself into the door frames a lot, even though they are wider wheelchair accessible size I seem to always misjudge where I am.

Left hand tremor - sometimes its only tiny but always there, other times particularly if I have been busy it trembles like a gooden, my GP has seen it when she did my neurological examination. Its only my left hand, typically I am left handed but gradually finding myself using my right hand instead to do a lot of things as its more dependable if that makes sense.

I have to pee, alot, day and night, at night I go about 3/4 times ans sometimes I get back into bed then feel like I need to go again. My GP checked my urine sample last week and said its showing normal.

I am nearly always constipated.

I struggle with thinking, remembering, getting my words out, like Im drunk when Im not, I am very forgetful and confused.

Tired, so so tired, doesnt matter if I sleep for 6 hours or 12 hours, I am exhausted.

The heat makes me worse, the few hot days we had recently were horrendous, I also struggle at night, even without a duvet Im getting super hot flushes, sweaty and feel awful.

I have anxiety, depression, mood swings, feel quite distant. Anti depressants havent made any difference. The only time I did feel mentally ok was when I was on a high dose of pregabalin for my jaw.

Throughout the day I feel like I have spiders or something crawling around on my skin, its kinda itchy and freaks me out even in my sleep I apparently try to bat them off me (there is nothing there). But when I hold my baby’s hand at night (shes 15 weeks old) I cant actually feel her hand in mine, its numb or like her hand isnt there.

My fingers sometimes go rigid, all tingly and I cannot bend them or use them at all - this can last for up to an hour and thankfully doesnt happen too often, its very bizarre, it doesnt hurt but feels weird like when you have slept on your arm and its trying to wake up again.

My left eye vibrates. I lose my peripheral vision a lot, get clear fuzzy patches and flashes of blue light in my left eye sometimes.

I feel physically weak/uncoordianted.

I have restless legs always jiggling them up and down without knowingly doing it.

Occasionally my heart seems to go weird, like it is thumping hard but not in a rhythm. Like its out of tune.

I produce a lot of breast milk, when I shouldnt. But my prolactin level has always been normal. Bleeding between periods. My sex drive vanishes every so often.

When I was pregnant I felt great, was pretty much symptom free but once I gave birth after approx 2 months I seemed to get most of the symptoms above and they stuck around for a good 3/4 weeks. I am just starting to feel a little more acceptable again now.

I had blood tests on thursday so the results should be back today, I can add the results if they may help?

Sorry to harp on. Like I say, any thoughts or advice greatly appreciated.

Ill also note that my mother has refused tests for MS but is highly symptomatic.

All the best.

Octavia.

Hi,Octavia

It sounds like you have way more than your fair share of problems going on.

You’ve done the right thing by seeing your GP and getting a referral to neurology. However, don’t let your GP put the idea into your head that it’s MS and can’t be anything else causing the symptoms. Only a neurologist can diagnose MS and only then after taking a history from you, doing a neurological exam and by doing a range of tests, certainly including an MRI scan and possibly also a lumbar puncture and / or a visual evoked potentials test.

However, there are a wide range of other disorders and diseases which share symptoms with MS. So your problems could in fact be caused by something else entirely.

Once you are sent an appointment letter for the neurologist, if it’s a long time in the future (and some can be), if you can afford it, you can try getting a private appointment initially, often with the very same neurologist who you’ve been referred to. This can kickstart the testing process as the neurologist can refer you back to their own NHS practice for the tests (which are often expensive).

Sue

My blood test results:

Serum urea level 5.5 mmol/L [2.5 - 7.8]
Coded entrySerum creatinine level 56 umol/L [54 - 93]
Coded entrySerum bicarbonate level 20.2 mmol/L [22 - 29]
Coded entrySerum chloride level 109 mmol/L [95 - 108]
Coded entrySerum total bilirubin level 5 umol/L [0 - 21]
Coded entrySerum total protein level 74 g/L [60 - 80]
Coded entrySerum albumin level 42 g/L [35 - 50]
Coded entrySerum alanine aminotransferase level 36 iu/L [5 - 45]
Coded entrySerum alkaline phosphatase level 107 iu/L [30 - 130]
Coded entrySerum potassium level 4.6 mmol/L [3.5 - 5.3]
Coded entryUrea and electrolytes
Coded entrySerum sodium level 141 mmol/L [133 - 146]
Coded entrySerum globulin level 32 g/L [23 - 41]
Coded entrySerum C reactive protein level 4 mg/L [0 - 10]
Coded entryGFR calculated abbreviated MDRD 118 mL/min/1.73m*2 [90 - 500]
Coded entrySerum calcium level 2.39 mmol/L
Coded entryCalcium adjusted level 2.35 mmol/l [2.2 - 2.6]
Coded entrySerum TSH level 1.6 miu/L [0.34 - 5.6]
Coded entryThyroid function test
Coded entryGonadotrophin level
Coded entrySerum follicle stimulating hormone level 6.7 iu/L
Coded entryGonadotrophin level
Coded entrySerum LH level 3.48 iu/L
Coded entryHaemoglobin A1c level - IFCC standardised 29 mmol/mol [26 - 41]
Coded entryMean cell haemoglobin concentration 32.8 g/dL [31 - 37]
Coded entryRed blood cell distribution width 17 % [10 - 16]
Coded entryRed blood cell count 4.6 10^12/L [3.9 - 5.6]
Coded entryMean cell volume 83 fL [80 - 99]
Coded entryNeutrophil count 1.85 10^9/L [1.8 - 7.5]
Coded entryEosinophil count - observation 0.08 10^9/L [0.04 - 0.4]
Coded entryBasophil count 0.02 10^9/L [0.02 - 0.11]
Coded entryLymphocyte count 2.4 10^9/L [1 - 4]
Coded entryMonocyte count - observation 0.29 10^9/L [0.2 - 1]
Coded entryHaematocrit 0.381 [0.37 - 0.48]
Coded entryTotal white blood count 4.64 10^9/L [4 - 11]
Coded entryPlatelet count - observation 232 10^9/L [150 - 400]
Coded entryHaemoglobin concentration 12.5 g/dL [11.5 - 16]
Coded entrySerum prolactin level 527 mu/L [70 - 566]