Last reply 2 months ago
Random symptoms

Hi everyone , I am new to this group.
I am currently waiting to see a neurologist which I have been told could take between 6 months to a year . Ridiculous I know 🙁
Since October last year I have been experiencing a multitude of various things happening to my body. I have had x3 episodes of approx 30 min body shaking, twitches, the odd spasm. I have left sided weakness( tingling, weird sensation feeling) . Sharp pain on and off in my right eye accompanied by nerve pain on the face that side .
My legs very frequently feel like jelly and I feel at times after about 15 mins dog walking that it’s my limit they feel totally fatigued which isn’t like me. I have much less almost sudden strength in both my arms and legs . The symptoms aren’t daily and vary from day to day . They usually last a few days although with my legs it is becoming almost a daily thing.
I have been back to the G.P. And they don’t deem it as urgent and have just said keep a diary !!!
Along with this my processing ( working memory) has become very bad and I’ve started to wake in the night with tingling or this funny sensation usually down the left side of my body .

Sorry for the long post I’m just unsure whether it is MS or whether any one else can relate to it.
I am not a worrier and take the attitude that whatever it is I will deal with it , it’s just that I seem to have sooo many different symptoms I’m not sure .
Thanks in advance for taking the time to read my post
Wishing you all a blessed day 🌞🌞🌞

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2 months ago

Hi @shellybelly and welcome. Your tale will resonate with a fair few of us.

First things first, yes, maintain a symptom diary. It will allow you to create a short, concise summary for any future appointments.

Your symptoms are associated with MS. However, they are also symptomatic of various conditions from a simple vitamin deficiency through to very serious conditions. This is why MS is notoriously difficult to diagnose.

Your Doctor’s attitude is most unwelcome. Perhaps they were having a bad day. But ,at least you have a referral to Neurology. I appreciate that there is a long waiting time for Neurology. They’re a very busy department.

If finances permit, a private consultation would speed up the process. After the initial appointment, you could move back to their NHS list

2 months ago

I agree with stumbler above even though you seem frustrated with the “keep a diary” advice…but it could become very important as if, when you finally get to a neurologist, they see MS symptoms but declare you “CIS” clinically isolated basically that you have just experienced one symptom so they won’t start treatment. If you can document enough maybe this won’t happen? I’m not in your health care system but think it could help.

And- what you describe as your frustration – being able to get into a Neurologist isn’t an issue we typically have in the US…if we have insurance we can get diagnosed and if our insurance will approve it we can get treatment. Not sure which is better? But none of the systems are perfect for us- that is certain!

Good luck and do all you can…if you do have MS there is much you can do to improve your situation like exercise, get your sleep, avoid stress, eat right, don’t smoke, etc. the basic advice for better health for us all 😉 You can also learn more about MS for your own sake but also to be an advocate – it never hurts to know as much as you can – I like Dr Boster’s channel for learning more about MS and also the MS Societies of the various countries

2 months ago

Hi @shellybelly. Sorry to hear your experiencing these symptoms. I have to say I would not accept the 6 month to 1 year wait time for a referral. Your GP should test you for vitamin deficiencies amongst other things if they have not already, and due to the nature of your symptoms I would question why they haven’t marked the neurology referral as an urgent one. If they really won’t do anything to step things up you can get an MRI done privately for a few hundred pounds just to get some answers sooner. I know from experience that my neurologist had a 4 month waiting list for appointments but he would overbook his diary to get urgent ones in sooner. Alternatively, you may be able to contact the hospital direct and do a self-referral. Failing that, go to A&E next time you have a bad bout of symptoms and see if they can speed things along. Good luck x

2 months ago

Hi @shellybelly
I think i waited about 3 months for a neurologist appointment and I was told that was pretty good!
One thing that may helped though, i had similar symptoms to you as you mention about your eye (as well as others).
I went to the opticians who was able to see an inflammation in my optic nerve. She then wrote to my GP to get him to make an urgent referral to ophthalmology at the hospital. So that slightly sped up the process in getting to see a neurologist.
If you think your eye is still not right then Id definitely recomend seeing an optician and telling them your eye symptoms.
Otherwise, good luck with everything. Hope you get some answers soon.
Feel free to ask anything from the group. There are is some great advice here from some old veterans! 😆

2 months ago

Hello @shellybelly, most important to keep a concise diary of symptoms. Also think about past episodes that might be linked. Great idea to have your eyes looked at and blood tests. Having urine tests looking for possible infections due to bladder problems are are good idea. And yes, if you could afford to see a consultant and have an MRI before your referral comes through, that would indeed speed things up. Good luck!

2 months ago

Thank you all for your comments. I did test a little low for B12 ( I’m vegan) and went on tablets. I’ve been taking them for months and the retest came back that my B12 is normal. I am still hoping that it is something as simple to remedy as that though.
The little reading I have done indicated that symptoms lasted up to a few weeks then went away for a while . Mine have been happening fairly frequently in some way since January would that fit with MS ?
I was thinking of going back to the G.P to try push things along but am unclear on what I should be saying ….any suggestions on how to tackle it ?

2 months ago

Hi. Yes my nurology appointment took 10months to come through at pilgrim hospital Lincolnshire UK. I’m waiting to go again not till may day bank holiday 4th may! My actual diagnosis came 40yrs after first onset at age of 19 ! My doctors told me it’s anxiety! Now I can hardly walk..i have numb left leg and foot..cramps and burning right hip isn’t good and my tremors are gearing up month by month now..morning intentional tremors seem worse but are with me all time now. I get blurred vision like a migraine will start..i can’t distinguish very well between blues and greens and reds Brown’s pink. So yes I understand you. Kind regards Carole. .

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