Getting sick of all this feeling ill and waiting and wondering, plus new symptom

As the heading says Im feeling particularly fed up today.

My neuro told me to phone her secretary if there were any more symptoms. So when the numbness and pins and needles started in my left side (always been the right side) I phoned. Secretary points me back to GP. GP points me to neuro. Round and round we go.

I got this really horrible feeling when I was sitting (with my feet up) in my left leg yesterday and Saturday. Its like someone is pouring cold water down my left leg just under my knee to my ankle. Its more horrible than the pain, twitches or the rubbish eyesight. Horrible feeling. Makes my skin crawl its so horrible. It only lasts a few seconds, but yesterday I couldnt feel my leg (knee to toes) afterwards and that lasted a few minutes. Does anyone get this?

Im fed up with feeling ill now and being stuck in the house all day, nearly every day (though watching the Olympics is a bonus). I just want my life back!!

Paula xx

Hi Paula - I’m not going to sugar coat it. It is just so so so hard. You think you’re sorted and coping then it goes and throws something else at you. Reading your post I would be very firm even stroppy with your neuros secretary saying that you were told by the neuro to phone if any new symptoms. So you are doing as you are told. WHAT IS THE POINT OF SECRETARY POINTING YOU TO GP HE IS NOT A MS EXPERT? Has secretary actually spoken to neuro - ask them or is this just a standard response. I know in my hospital they have a weekly relapse clinic. Sometimes actually most of the time we have to fight. Hope this helps and let me know how you get on Hugs Min xx Ps actually sometimes I do feel pretty good here’s hoping you do too

(((Hugs Paula)))

I’m with Min on this one. Be firmer. Instead of ringing and advising your neuro’s secretary of further developments, ring and request an appt sooner rather than later or ask for your neuro to call you back - mine has done in the past. Failing that ask your GP to push for another appt - they have a bit more ‘power’ than we do.

The hospital that I’m under is also an ms specialist centre and the neuro’s have clinics as do the ms nurses. I know this doesn’t apply to all hospitals but that still doesn’t mean that you should be left to suffer in silence.

I’m afraid sometimes we do have to shout a bit louder (so to speak) to get heard, so be firm with them.

Good luck and I hope that things start to improve for you.

Debbie xx

Thank you for your replies

The neuro I have seen once before wants me to go back in September after all the tests to see if I have actually got MS (not dx yet). She is a MS specialist so Im with the right person.

I will phone secretary again and see what is happening. Im usually quite a forceful person who gets what she wants, but at the moment my confidence has been knocked so much by all this that Im like a little girl :frowning:


Hi again. Yes understand confidence being knocked. But do try to be strong with secretary. Anothe option thoug is If I want a answer from the horses mouth if you know what I mean I email my neuro. All will have email addresses. Obviously I only email when important but your sounds it. Ask secretary for email address. More hugs Min xx

Just tried phoning sec again. Shes only in mornings, so left a message hopefully she will phone me back tomo morning. I dont have an email address for my neuro Min, theres nothing on the letters I have.

Will ask about results for the millions of blood tests too and the VEP and spine MRI. Will be good to know if they all normal (fingers crossed).

Thanks people you are a great bunch

P xx

Hi again -your neuro will have an email address everyone who works in nhs does. Whether he is prepared to accept emails from patients is a different question. If you want to pursue this ask his secretary for it. Hope you are feeling better Min xx

I know exactly how you feel Paula .

My neuro asked me to email him in2 weeks about how im going on the meds etc .

So i emailed him on monday ,nothing ,no reply ,no phone call.I might ring his secretary today ,i hate ringing her ,it takes me ages to pluck the courage up to ring .Shes a right moody so and so .

You have to be persistant ,you really do .Ring secretary this morning .

Good luck

Sam xx

Sorry to put a downer on this, but I don’t want you to get your hopes up only to be disappointed: I have a funny feeling that the best you will be able to hope for is a meds recommendation and/or an “Interesting, we’ll discuss it when I see you in September.”

Neuros are able to bring appointments forward, but I would guess that sensory problems are not considered terribly important, no matter how painful they are.

I really hope I’m completely off the mark! And there may well be cancellations because of summer holidays so you might get lucky :slight_smile:

Karen x

Nothing else to add on the advice side but just wanted to say I know how you are feeling and sending you big hugs


Hi everyone and thank you all xx

Spoke to neuro sec yesterday morning (a really lovely woman).

Neuro is on holiday until next week anyway. Sec said (again) to go to GP, tho when I told her I was getting fed up with going round in circles, she said she would of course let neuro know when she returns, and that she was just thinking that my GP (who is supportive and pretty much brilliant) would be able to give me meds to help.

I explained that I am on huge doses of Tramadol, plus beta blocker, plus anti-epilepsy drug (prescribed by neuro as my jerks/tremors/twitches were exhausting), plus amiltriptyline (cant remember anything else) and that I would be pretty much a walking pharmacy if I got anything else!

Sec then explained that until all the results were in (had spine MRI last week) neuro would still want to wait till she had a better picture of what was happening to me. I can understand that, so now Im left with feeling cr*ppy still (since April 2nd when the ON started in one eye) and feel like every day I am getting worse.

I now have a stick to help with walking around, but am pretty much housebound. I only go out when my fiance is here at the weekends as I dont feel safe on my own, and I have lost all the self confidence I used to have.

Not having a good day (as you can hear!). But thank you all so much and Karen (Rizzo) I think you are pretty much spot on (again).

Paula xx

Hiya. I totally understand your frustrations. I suspected that I was having a second attack with the tremors so bad for the last 2 weeks. After 18 days of Prednisona which did nothing I went back to my GP who said that my next appointment was not till the end of September so suggested that I went to accident and emergency. I have just come out of hospital after a 3 day stay, more steroids and had another 2 hour MRI with dye and on beta blockers too for the tremors. But the positive thing is that I am now back on their radar and have another appointment on Tuesday for the results. Sometimes it’s really worth pushing because the symptoms drain not only your energy but also you confidence. Take carexx

hey Hun…sorry to hear you are so fed up…understandably so…I have had something similar re like water running down the back of my leg from behind knee down to foot…except. mine feels like warm water…lol it’s most odd …I would ask your gp to fax a letter outlining your new symptoms and and the letter will be scanned onto notes once neuro has read it…they can decide what to do from there…sounds like they want all the info in by the time they see you in clinic…I too have had ON on one he since jan and still can’t drive as eyesight is not legal to drive…even so my arm and shoulder are so crap I wouldn’t like to get behind a steering wheel if my eyes were ok…lol can you get any help to get about ie a motorised scooter perhaps…at least that way you could get out to the shops…get some fresh air…? there may be mobility companies who can hire you one to try out? At least that way you are comfy and safe…?. just an idea…:wink: hang in there em x

Thanks everyone

Im not feeling as fed up today :D. Had a good weekend with my fiance and my kids (well adults) and even managed to make a lovely Sunday roast for 7 yeasterday. Was so pleased with myself that I didnt slope off for a couple of hours nap!

Saturday night I got another horrible back spasm - these are just so painful! I explained to my o/h that I would rather give birth than get the back spasms. I was disappointed to get this as I had gone 5 weeks without even one, and I really thought the tabs had controlled this. This one lasted about 5 minutes too. Its weird though as I actually laugh when Im getting them (with tears running down my face!). Dont know why that is?

I think for me the worse symptoms at the moment are the pain in right foot, fatigue, and constant twitches. So thats a massive improvement for me. Even my eyesight seems a bit clearer these past few days.

Thanks again everyone

P xx