@feeblefee

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feeblefee

The long wait

Hi guys! I'm new to this ?. I have yet to receive a diagnosis of ms I am waiting on a neurologist appointment (hopefully coming soon) ill give u a brief back story on how I ended up here. For the last 3 yrs I had been consistently going to my GP with pins&needles along with sharp pain in my forehead and left cheek I have constant headache type pain in my forehead which never goes away, with intermittent sharp electric type pain in the same area. After repeated trips to my GP and referrals to ent the consultant said trigeminal neuralgia. But since January this year I have terrible fatigue like walking through mud especially in my legs my left toe is numb with pins & needles in both hands and feet, I have "vibrating" sensations up and down the left side the symptoms to begin with would come and go usually lastinh a couple of weeks but now since last Month they are constant including the following symptoms: Blurred vision coming & going Speech, memory & thinking problems Severe pressure in head Pressure and shooting pain behind eye (left eye) Tightness/tension around body Numbness in the inside of left foot and toes progressive over whole foot up to leg & knee Numbness in left hand progressive up to entire arm with shooting pains Symptoms & pain worse to cold & heat Stabbing & shooting pains in head and left cheek Numbness in hands & fingers Balance problems Dizziness Urinating throughout the night Light sensitivity Muscle cramps/spasms in hands and feet, also in various areas Extreme fatigue Swollen fingers Tinnitus ‌Stiff neck Last week I was sent to hospital as I woke with lots of grey spots in both eyes after seeing the consultant she said my eyes are fine but she asked I be urgently referred to see a neurologist as she suspects ms. Do these symptoms, time line , and progression sound normal in ms ? I'm just really worried and ive been searching for answers for so long as to what's wrong with me and I'm nervous as to what may potentially show up when I see the neurologist Love to you all xx

Stumbler

@Stumbler

Hi @feeblefee and welcome. I can understand why you have joined us with that lot of symptoms. Yes, they are suggestive of MS, but they can also present in other conditions too. The Neurologist is best placed to find out what is going on. They will need scans to try and see what the problem is. I can also understand that you are worried, but this will only make you feel worse. Do try and relax, as hard as it may seem, and rest up. There is a good reason why we are called patients! :wink:

feeblefee

@feeblefee

Thanks @stumbler ? I think just even venting about this has made me feel better i shall continue to update as I go thankyou for the advice!?

reddivine

@reddivine

None of us are drs are stumbler is right, there are a plethora of reasons why you could be having these symptoms. (don't turn to Dr google, you'll scare yourself silly!) It may take time as neuro sends you for test after test but they try to rule stuff out and then....well its a waiting game!

feeblefee

@feeblefee

I know @reddivine it's just so frustrating knowing somethings been wrong this last couple of years without an answer now I'm desperate for one but I'll try my best and be patient! Just eagerly awaiting the post man to deliver my appointment letter ?

mammamoose

@mammamoose

That's a lot of symptoms and they could well be related to MS or something else. I know it's so horrible waiting for the appointment the the test results etc. but you are going to the right place and you will get your answers. Try and stay positive, not easy I know . Take care MM xx

feeblefee

@feeblefee

Thanks.@mammamoose I've kept a list of symptoms and time lines hoping itll be beneficial when I see the neurologist. I got my full blood screen test done 2 months ago and all that showed up was vitamin b12, folic acid and vitamin d deficiency no infections etc I had been given supplements to take blood retaken a 6weeks later & levels had stabilised but my symptoms have stayed the same I was really hoping the supplements would have done the trick xx

aggies

@aggies

Hi @FreebleFee I am in a similar situation as you- although I was lucky to get into a neuro who specializes in MS earlier this week. I don't have lesions visible on an MRI -- but she is considering me at the "threshold" of MS and has put me on the road to some major life style changes-- including good sleep, acc acupuncture, b-12 injections, probiotics, fish oil, stress b supplements, and of course- vitamin d. She also ran a million other blood tests to rule out other diseases (I thought my primary doc had ran them all- boy was I wrong!) i go back in a couple of months for some more MRIs. So- while i am not diagnosed, she is treating me like an MS patient-- but through a holistic level until/if I get an actual diagnosis. Also- she advised the importance of diet-- no diet sodas, lots of fish and eggs and limit red meat. My advice to you would be to find a neuro who speclializes in MS. Best advice for me-- and boy-- I feel so much better and hopeful than I did a week ago. Good luck- being in limbo sucks- but in the meantime, try to take care of yourself and read up on some holistic care.

feeblefee

@feeblefee

Hi @aggies?so do you think going private then to see a neurologist who specialises in ms? I don't think I can pick who I see on the NHS I called the new Elizabeth hospital neurology department checking on whether I had an appointment yet but the secretary told me 'urgent' appointments take 4-6wks (my GP told me 2weeks?) needless to say I was disappointed. I was hoping to be seen sooner, as I feel terrible. I would be interested to know if anyone finds their symptoms worsening from wearing tight clothing? I wore skinny jeans yesterday and my legs went crazy , numbness, pain, walking difficulties. Has anyone else experienced this? Xx

aggies

@aggies

Hi @Feeblefee- I live in the US so I don't know how things work in the UK. If you have the option of paying and seeing an MS neuro- it may be worth it!

potter

@potter

I have numbness across my back, my neuro told me not to wear tight jeans. I don't ever wear jeans and the numbness is still there. Potter

feeblefee

@feeblefee

Thanks @aggies and @potter? I shall definitely look into perhaps having a consultation with a private neuro. @potter o too have numbness regardless but tight clothes definitely make it worse x