Awaiting neurology appointment, not diagnosed

New diagnosis and before diagnosis
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Hi all,

I am currently waiting to see a neurologist. I was referred by my GP back in January time however due to excessive waiting lists (prior to covid-19) I decided to be seen privately. My appointment is next month but unlikely this will go ahead.

I am a 30 year old female. I have been having symptoms for about 8+ months now. My symptoms are muscle twitching (legs, arms, torso and back mainly), tremors, constant tongue tremor, burning sensation in thighs, leg weakness, occasional jerking of hands/arms, leg spasms. When I first went to my GP I had bloods done and was found to be deficient in vitamin D (19) and folate (1.3). I have been on 10 weeks of a high dose of vitamin D and around 14 weeks of 10mg folic acid a day. There have not be any improvements on my symptoms. I am also taking baclofen 10mg three times a day, 50mg amitriptyline daily and codeine for pain relief. My deficiencies have been rectified and I thought these would have been the reasons for my symptoms but this is looking unlikely now.

Prior to these symptoms I had been found to have problems with my epiglottis and it narrowed anteriorly/posteriorly. My issue is similar to vocal cord dysfunction and causes changes to my voice, choking episodes and coughing. I attended speech therapy to try and help the spasms in my throat. My GP now believes this issue is most likely relating to the other symptoms I am having.

My GP has said this could be MS related or another neurological issue. I am keeping a log of my symptoms and update team when there are any worsening symptoms or something new. Has anyone else had similar symptoms to me? My most worrying symptoms at the moment is my ongoing tongue tremor and leg weakness. The leg weakness can be alternate legs but mainly the left side. I am beginning to struggle going downstairs safely at the moment.

Thanks

A x

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Hi A,

what a worrying thing to be going through at this time. I’m also undiagnosed, had symptoms and been going to the GP for about 4 years now, been referred a few different places and never got anything back. Eventually got a referral to neurology in September, appointment in December, MRI in February and should’ve had my results during lock down. Luckily my consultant spoke to me on the phone before hand and said MS was the most likely cause of the inflammation in my brain but that I’d need a lumpar puncture to be sure.

I feel like an MS diagnosis would be bad enough at any time but all this waiting makes it worse. I really sympathise with you. I’m unsure really what to say other than you need an MRI and a lumbar puncture but won’t get that ATM.

My symptoms aren’t the same as you, expect the leg pain, maybe even the tremor. I get pain in my hand and arm, struggle to use my hand in the morning. Eyes also more dry and sore than normal. I was actually thinking that I should be keeping a symptoms diary, that should come in handy when you see a neurologist. Also, from what I’ve read the meds that you’re on are normally what’s prescribed to MS patients. Didn’t really know a GP would give those. Think I’ll phone tomorrow and see if I can get them and if they’ll help. It’s so hard to tell ATM what’s MS and what’s anxiety and stress.

Good luck. You’re certainly not alone! X

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Hi doodles and anon.

I`ve been around these parts on and off for quite a few years.

Both your symptoms do sound MS related. But thing is, there are so many other conditions which mimic MS.

Baclofen and amitriptyline are typical MS drugs, to help with stiffness, tremor, (which are both forms of spasticity)

I`ve been on the former and am still on the latter.

Just watch the dosage with baclofen, as it weakens muscles and it actually caused me to fall more when the dosage was upped.

Sadly covid will delay appointments and testing…but that`s common for loads of stuff.

My story is lenghty but I`ll shorten it for you.

I`m 67 now…at 45 I began with footdrop, falls and fatigue. I also had bladder/bowel accidents, leg and arm spasms and a twitchy eye!

I had MRIs, LPs, EMGs, oodles of blood tests, but nothing ever proved what was going on.

I presented as typical PPMS. I needed a wheelchair within a year part time and have been a full timer for around 18 years or so.

I saw 16 neuros over 16 years and in 2011 was told to forget MS…it was HSP…hereditary spastic paraplegia. I wore that label for a few years. I had genetic testing, which came back negative so I lost the HSP label and replaced with a huge ?

In 2017 I was discharged from the neuro who said there was nothing they could do for me.

Last year I got to see a fantastic neuro at a specialist neuroscience hospital.

I went in for a week`s test and came out with a definite diagnosis…

Spinal PPMS!!!

It took 22 years to get there. Dont be alarmed too much girls…this is highly unusual to wait so long to get a diagnosis.

Take care and stay safe both of you.

love Boudsxx

1 Like
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Thank you for replying to my post anon and boudica405. You are both going through a difficult time.

Anon, do you ever have tremors or shaking of your eyes? I’ve had a few episodes of mine shaking side to side but I haven’t had it for a few months now. I hope you hear back about your results soon. You should try and keep a note of your symptoms. I just record all mine under the note section on my phone. I only tend to add something if there is a new symptom or a significant change in my symptoms. Did you try ringing for your results?

Boudica, I am sorry to hear it took so long for you to have a diagnosis. It’s very hard not having an explanation for your symptoms. I will definitely be careful with the baclofen, I was unaware that it can cause such symptoms. Do you mind me asking what hospital you had your diagnosis? I am in Nothern Ireland. There has been such a long wait for private and NHS appointments here. I have tried not to read too much into things online regarding my symptoms. Is a lumbar puncture definitely requires for a diagnosis? Spasms and muscle twitching are my main symptoms. Can you see your muscles twitching whenever yours happens? Mine are very visible since this began. I was able to record my

twitching and show this to my GP.

Take care

A xx

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Hi again doodles… The specialist hospital is The Walton in Liverpool. People go from all over the country as they are so good. But of course there is a long waiting list. Covid has closed all their clinics.

An LP isnt absolutely necessary for diagnosis, but it can help. I`ve had 4…the first 3 were painful, so I had the 4th under xray…soooo much better!

No, I cant see my muscles twitch but I do see my toes or feet jump after one.

Boudsx

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I have heard that it is a very good hospital for neurological issues. I had actually tried to book a private appointment with a doctor who worked there and planned to fly to Liverpool just before lockdown happened. LP sound horrendous but It’s something I would go ahead with if it was required. Xx

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Lauren x

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Doodles, you can always do that after lockdown.

keep safe.

Boudsx

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Hi do you get cramps in hands and shooting electric shock pains in arms.I have a booked brain scan in 2 weeks time and terrified as think MS.Also foot drop leg weakness but its the hand cramps and electric shocks in arms that are so horrible.Thankyou…orif anyone else can reply please.Bear in mind I am really fearful right now.

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Hi Bouds and doodles,

I typed out a really long reply to you both but looks like it didn’t send! So sorry about that!

Bouds, I had heard that a diagnosis could take a long time but I’d never imagined 20 years! Hearing someone as positive as you how has been through so much is helpful. So thanks for that! What exactly is a leg drop? My leg feels funny and I feel like I’m walking strangely, especially upstairs. My eyes are really sore and dry, they’ve always been dry but since lock down started they’ve been worse. I’ve used chopsticks twice in the last week too, normally use them no probs but my hand was really sore this time.

doodles, yea I really need to start taking a note of symptoms like you say. I was told that I would need a LP to be sure… my neurologist phoned me, he asked me to phone 4 weeks into lock down so that we knew more. He advised against coming in because of covid but said if I wanted to take the risk I could come in. I’ve decided to go in for peace of mind if nothing else. I feel the same as you all trying to get a diagnosis at this time. I think it would be difficult enough to deal with all this at the best of times.

Mary, I’m the same. So worried and stressed about what my future might be like, I’m only 26 and been having these symptoms on and off for 4 years. Although I know it’s normal to be upset, I’ve had a melt down for well over a week now, but I’m trying to think of knowledge as power. After suffering symptoms and being really worried at least if we know what we’re facing we can deal with it and get the best help and support available.

good luck x

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Hi Lauren…foot drop not leg drop!

Its typical in MS to think you have made a certain movement and the message doesnt get to its destination…like when you think you have picked up your foot to take a step…when you havent and it cause a stumble, trip or fall.

Boudsx