Symptoms but no diagnosis

New diagnosis and before diagnosis
1

Hi all

I am new to this forum and was just hoping to get some advice.

I have a history of symptoms which go back from my first episodes which were extremely mild in 2007 up to present day which has become progressively worse.

I had experienced tingling in my left side of face and left foot, also feeling like I had insects crawling over my head. I felt tired also. But other than that, no other symptoms. GP referred me to endocrine, who then had me tested for MS. I had MRI, nerve conduction study and lumbar puncture which were all clear.

I had no other symptoms until about 5 years later when I had facial spasm causing my mouth to be pulled over the the side along with numbness and tingling. This only lasted 5 minutes and happened every 2-3 years up until 2019.

In 2019-2020 I had 4 episodes of the tingly face on left side along with facial spasms. All coming on very suddenly.

From April - June 2021 I have had 1 episode a month and it has started affecting my left arm and hand, causing tingling and prickly feeling.

From July 2021 Iā€™m now having a least one episode of facial spasms every week, sometimes 2, all lasting anything between 3-15 minutes where my face is pulled over to the side causing my mouth to be pulled over. My symptoms have worsened and I have tingly face, arm, hand and foot all on left side every day now for over a month.

Other symptoms include:
Tiredness
Dizziness
Feeling like I have something in my left eye
Finding it hard to concentrate
Mood swings
Itchy legs
Cramps in left hand, foot and leg
Lower back pain

I seen GP who says she feels it may be nerve damage, mini strokes or mini seizures. She said MS is not at the top of her list as my tests came back clear. Can I ask if anyone has ever had these tests some back clear in very early stages. My symptoms were not as bad then and it was almost 15 years ago from the tests were done.

Iā€™m so confused. I have been referred to neurology but am going to go private for first appointment as the waiting list are so long. Really want to get to the bottom of my symptoms. They just become worse every month and Iā€™m a little afraid if things arenā€™t helped it will continue to get worse.

So sorry for the long message but felt, it best to include some history to give a clear picture.

Thanks so much for listening

2

I totally understand your situation. I have a similar situation. I first had symptoms in 2019 but my mriā€™s and lumbar puncture were clear. I have some new symptoms and some worsening symptoms. My gp has referred me to neurology again, and also to ENT for the vertigo. I donā€™t have answers but I am in the same position as you. I hope your private appt goes well. I went private the first time as there was a six month waiting list

3

It sounds like you doing the right thing. Speaking to a neurologist may give you a good explanation of whatā€™s happening. I think they have a very wide experience of what maybe going on and can build patterns to give you an explanation maybe they can suggest different tests.

Good luck

4

My MRIā€™s were clear for years. Just keep fighting for answers. Itā€™s a long, frustrating process.

5

Hi Norasmum

Thanks for your reply. Have you had a diagnosis now? I have often wondered if anyone had ever had clear test results but then later MS be diagnosis. My GP was very quick to brush off MS because of clear test, but they were done so long ago when symptoms were so minor I fear that nothing has shown up. Hopefully neurologist will give me another MRI.

Thank you

6

Thank you very much James4 for your response.

Really hoping neurology will be able to find out whatā€™s happening. It just means I can move forward. I know it can be a lengthy process. Itā€™ll be good to get some answers or even rule some things out.

Thanks again for your supportive words

7

Thank you so much for your response Welshlady and really hope you get some answers too. Very frustrating and stressful. If I knew why the symptoms were happening Iā€™d be able to move forward with the treatment if necessary. Just a waiting game really.

Good luck to you with ENT and with neurologist.

8

Iā€™m not a neurologist or a health professional, but I do have cervical dystonia (which is a focal dystonia of the neck). Your mouth pulling/spasms does sound a bit like a focal dystonia to me, more like that than MS. That can come with tingling and strange sensations, partly because some of us with dystonia seem to deplete magnesium and / or zinc. If it were to be dystonia then a neurologist would recognise it, these days. It is on their radar. Most GPs are unaware of it as dystonia is quite rare, or was, due to having been poorly recognised in the past. It is not a neurodegenerative disease, but the favoured treatment (Botulinum toxin) which treats symptoms is not benign and may do long-term damage to the CNS. Dystonia does not show up on standard MRI.

As others have said a good neurologist will go through your symptoms and try to pick up the pattern and hopefully determine a diagnosis if it is neurological in origin. Hope you get some answers soon.

1 Like
9

Gem, I finally got my diagnosis about 2 years ago. I think that for MS, itā€™s very important to get the MRIā€™s while youā€™re in the midst of a relapse, and thatā€™s not available to most people because of the lengthy wait for doctors and tests. Iā€™m one of those whoā€™s become convinced that some lesions heal themselves until they develop in the same places over and over again, so thereā€™s nothing to show up when you donā€™t get tested until a couple years later.

Iā€™m in the US, and I lucked out with my current neuro (having tried at least 4 others before him). He let me describe my symptoms and what past doctors did and didnā€™t do, and then declared that since itā€™s apparently not a common issue, we need to start looking at the uncommon ones. I was in the midst of the longest relapse Iā€™ve ever had, and he immediately scheduled me for something like 24 blood tests, an MRI, and an evoked potentials, all of which were done in less than 2 weeks. The MRI results were quite obvious, but the other tests were still clear or questionable, so he followed up with a lumbar puncture to be sure.

Hopefully, the neurologist can help you head in the right direction. If he doesnā€™t work out, try another, and just keep going until you find out whatā€™s causing your problems.

1 Like
10

Thanks NorasMom.

It could have been likely that lesions were healed by the time I had my testing done. I have my neuro appointment in 4 weeks and am currently in the midst of symptoms. Have been now since mid July. Hopefully mri wonā€™t be long as Iā€™m going private. Hoping lesions wouldnā€™t be healed in the extra few months if I donā€™t have symptoms during mri.
I really do feel so much different this time, I know something isnā€™t right. Just need a good neuro to tell me what it is

Thanks again xx

11

Thank you Ziola

Hoping my neurologist will get to the bottom of it. I hadnā€™t heard of cervical dystonia. Really hope whatever it is it can be discovered soon. Facial spasms have been so upsetting at times. Especially if Iā€™m in publicā€¦although not so bad in covid times with having faces masks lol

I have my appointment in 4 weeks, Iā€™ll keep you posted

12

BTW The focal dystonia that affects the mouth is called oromandibular dystonia. Blepharospasm is the name of the one that affects the eyes.

Musicians have their own special dystonia call ā€˜musicianā€™s dystoniaā€™! Wind instrument players find it affects around their lips, whilst piano/keyboard players it affects their hands.

13

Hi all

I hate to write this here because donā€™t like talking negatively about my husband.

But during my symptoms, if I mention them or even when I said I think I might has MS, he was very dismissive. My husband is usually very supportive and gives me great comfort. I find he changes the subject alot when I talk to him about my symptoms or sometimes makes jokes saying, " oh that must be your MS again" sarcastically.

I know my husband wouldnā€™t hurt me for the world, he has been through alot thus year too with losing his mum. I do feel heā€™s probably trying to make light of it and in denial that there may be something wrong with me.

Has anyone else had issues with other people not understanding or seeming to really care about symptoms or making light of the situation.

Really donā€™t know how to deal with this. Because I have been so obsessed with my symptoms and I know heā€™s bound to be fed up of listening to me. But I tell him everything and just wish he would give me more support.

Please donā€™t think my husband is an awful person. He is the most wonderful man and dad to our 3 boys. I think he just doesnā€™t believe anything is there until thereā€™s a diagnosis.

Thanks everyone x

14

People do struggle with how to deal with potential ill-health in people who are close to them. Worrying about the worst, but hoping for the best, but that can often come out as denial, dismissal, or talking to everyone except the person with health issues about it, yet not talking to the person about it, even going behind that personā€™s back.

When I was in my early 20s I started to have neurological symptoms and got referred to a neurologist. MS was not on my radar at all. We did not have the internet and google. I was away at university so didnā€™t even have access to ā€˜family healthā€™ books. My mother was terrified it was MS, but didnā€™t mention it to me. Instead she got out of me who my GP was, under some pretext. A few days before my neurology referral, unknown to me, she rang up my GP and told her something along the lines that I was neurotic, or a hypochondriac, or it was all in my head. My mother hadnā€™t even seen me - I was away at university. She was in denial mode, and wanted to make sure it wasnā€™t MS, by trying to suggest something else as a reason. (BTW I wasnā€™t neurotic, or a hypochondriac!)

Anyway, I went to the neurologist appointment. He was really off-hand. Did a quick few neurological basic tests - reflexes etc. Then asked me what I was worried about. I didnā€™t answer that as Iā€™d thought what I probably had was just glandular fever, and hadnā€™t expected to be referred to a neurologist. Neurological disease wasnā€™t in my mind at all. It probably should have been! over the last 3 years Iā€™d had two 6 weeks bouts of vestibulitis, told due to a virus, some problems with my eyesight, had a spell of Lhermitteā€™s sign, which Iā€™d not even mentioned to GP or anyone, and then had a period of severe fatigue and some problems walking, which I thought was likely to be glandular fever. It was after the latter that I got referred.

Anyway, then the neurologist turned on me and said " we have people who are struggling to walk, people with disabilities, and then we have people like you, wasting our time". I was shocked, upset, puzzled. I hadnā€™t lied, I hadnā€™t overstated anything. Iā€™d not gone in looking pathetic or feeble. As some symptoms returned i went back to my GP, and she was quite off-hand too. Said ā€œwe all get pins and needles from time to timeā€. Iā€™d never mentioned pins and needles! I then realised something was up and that I was being treated as a hypochondriac, and treated for anxiety, which I was not suffering from!

10 years later I learnt from my sister what my mother had done. My sister had been sworn to secrecy. That ā€˜neuroticā€™ label hung on for nearly 30 years, and did a lot of damage. Left me with little trust in the medical profession.

So what Iā€™m saying is, people are complex, you wonā€™t necessarily get the right support from your nearest and dearest!

15

Jeezo Ziola, just read your reply. So sorry that you went through that with your mum. As if the health problems arenā€™t enough by themselves. So many folk seem to get treated that way. Like they are imagining things. Iā€™m really nervous about my neurologist appt in a couple of weeks, in case I get treated that way by him. I would pass that basic neuro test just now but I feel awful. And very scared. I need to be believed.

16

Oh my goodness Ziola

Iā€™m so sorry to hear this. It really is shocking to hear someone you love and are so close to can react in that way.

I hope youā€™re ok. Iā€™m sure it was a very difficult time for you, being doubted by your mum.

I suppose we just assume those nearest and dearest will support us the most and give the most comfort like they usually do. But how can they know how to support when they donā€™t understand ans havenā€™t been through it themselves.

I hope you are getting the love and support you need now xx

17

Hi Winnie

Itā€™s so hard not to feel scared at times isnā€™t it. Although I do feel I am more stressed with not knowing what is happening. I feel if I got thr right diagnosis I would feel more at ease as Iā€™d be able to get the treatment and support I need and then people wouldnā€™t think itā€™s all in my head .

So sorry to hear of your GPS reaction. Thatā€™s really unprofessional in my opinion. Itā€™s bad enough being doubted by people but when medical professionals begin to brush you off itā€™s much worse

I first developed symptoms 15 years ago, havenā€™t really had a whole lot since (the odd episode here and there but nothing major). They took everything seriously then, done mri, lumbar puncture and Nerve Conduction study. All came back clear. Since then nothing has been really taken seriously, just brushed off as ā€œitā€™s just you and something that happens to youā€. Only from a spike to a different doctor in June this year that she said I need to see an neurologist again as its been going on too long.

Itā€™s so awful, start doubting myself at times. My whole life is just consumed by it all. Over obsessing all the time and wondering whatā€™s happening. Which Iā€™m sure isnā€™t doing g me any favours.

I really canā€™t wait for my neuro appointment, nervous like yourself but really hoping a get someone who will take me seriously.

Iā€™ll be thinking of you in a few weeks. Please let me know how you get in on!!!

I would love to be able to email you for a chat, your welcome to chat to me anytime too. Nice to know weā€™re not alone.

How do I get your email address?

Thanks so much

Good luck x