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Still frightened

Hi I have posted on here last week and still I am worried sick and can not get ms or something off my mind. I know I’ve probably put some of this in my last post but my problems started 9 weeks ago when I had acapuncture for an inner ear infection. I woke up two nights later tingling from head to toe, the next day my arms and legs felt like jelly which is when I started to really panic then later in the day my legs and feet started to twitch and spasm. Basically that week I didn’t sleep. I started to get zaps in my feet etc and got the creepy crawly feeling throughout my body. I was eventually put on meds to sleep and referred to a nuerogist only after much persuasion. I had a brain scan which came back clear. The neurologist did give me time, he also tested my reflexes but his diagnosis was anxiety, he prescribed me lyrica both for my symptoms and anxiety. I’ve also had some bladder issues which have calmed down a bit. I’ve had burning hands and a couple of weeks ago a patch of my left arm went numb then started to burn. The past few days I have felt completely drunk and been stumbling which I think was caused by the lyrica which I am no longer taking. At the moment I have pins and needles in both hands and feet, it is not constant but is there mainly when I lie down and when I’m sitting. I also found my hands and feet falling a sleep on me but once I move them they are ok. I am due to go back to my neuro end of January and I have also talked them into giving me a spinal MRI which will probably happen in January. I feel like doctors are treating me like I am a nut case. The neuro had also up my problems down to anxiety however he has not discharged me. I have been so upset and depressed since this started. I have phoned the neuros secretary on numerous occasions. I get on quite well with her now but I just feel like everyone thinks this is in my head. I think even my family are fed up of me. I’m a single mum and struggling to do anything at the moment as I’m overcome with fear. I have googled all my symptoms, I have googled spine problems that can result in my symptoms and it always comes back to ms. I am really frightened. Also it’s not nice experiencing all this when everybody seems not to believe me. Thanks x

Obviously, Dr Google has not been a lot of use (happens quite a lot).

Advice given me by a Neurologist some years back:
Make a list of all your symptoms.
Now group them together (like pins-and-needles in your feet, and spasms in your feet belong together).
Now write out the list again - worst symptom first, and so on.
Now write it out again, you will remember it better that way.

Now you can make out two copies of the list.

Take them to the appointment, but do not give them to the Neuro. You come across better if you can remember all your problem symptoms and can tell the Neuro quite calmly. (That takes care of the “nutcase” suspicion).

At the end, then you can hand over a copy of the list - but not before. You want his/her attention on you, not a sheet of paper.

They must be taking you seriously to see you again so soon.

Hi I’ve been having test after test in the last 9 mths and awaiting DX , the one thing I learnt , after advice from the great people on here is STAY AWAY FROM DR.GOGGLE almost drove me nuts. Let the experts decide , not the internet ! I wish you well & good luck Take care Gray xx

Thanks for the advice. I will do that. The appointment was made for two months after my first visit which falls at the end of January. I get the impression the neurologist is seeing me again just to make sure his theory was right. Suppose he has to do this to cover his own back but what I can’t understand is how he told me that he is certain it is anxiety. When I questioned this he just said that of course he is and after all he is the expert. I don’t understand this as I’ve not had all the tests and feel like this is a bit of a lie and from what I know they are not allowed to lie to you. The specialist I saw was an ms specialist as well x

Thanks gray doctor Google iOS defo driving me crazy x

I am so sorry you are having difficulties finding answers to your problems, it is really scary and distressing to be in this situation. I guess the reassuring thing here is that you are being assessed by neurologist, you have had brain mri and will be having spinal mri.

I understand it is distressing to be told symptoms may be due to anxiety if you do not believe this is the case - but -

PLEASE PLEASE PLEASE can people try to use appropriate language when discussing this.

“I feel like I am being treated like a nut case” is actually quite an offensive statement to people who have diagnosed mental health problems. And since you are saying you have been depressed and anxious since all this started , it is possible that anxiety may be playing some part in your symptoms". using terms like ‘nut case’ will harm your own self esteem and self worth (it will make you feel more negative and judged) and will also have similar effect on other people who are experiencing similar problems. We do not use the phrase ‘nut case’ anymore.

. i can totally understand your frustration that you are being told your symptoms might be anxiety-based when you feel this is not the case. And certainly, some doctors can be quite dismissive / patronising when they suggest symptoms are anxiety based. But no doctor will ever tell you they think you are a ‘nut case’, and in my experience, doctors themselves understand that mental health is quite complicated, and you will seldom meet a doctor who sees mental health in such judgemental terms.

I can completely relate to your distress about your current situation but keeping terms like ‘nut case’ in common usage is not OK.

I know it’s probably not the correct term to use but I’ve just gotten so fed up of going to doctors and keep being dismissed or not listened to properly and right now I am feeling extremely depressed because of all of this and actually been questioning myself a lot. I do work with mental health patients so under no circumstance would I use it to offend. I was just saying that’s how they make me feel. Yesterday I went to see a doctor regarding my medication and felt he didn’t even have the time to listen to me. I am finding all of this very hard to cope with and I would never intentionally set out to offend anybody

For a short thread, this is very interesting.

Anonymous No 1 (who we now know to be Jojow) gives a very clear outline of her current problems, including the statement:
“I feel like doctors are treating me like I am a nut case.”

Regular readers of the “Everyday Living” forum will know that she is not the only person to have had similar treatment from the medical profession recently. “Anxiety”, Depression" “Imagination” are some of the terms that have been used to try to explain away the very real symptoms that a real person is experiencing. Personally, I consider that suggesting that an individual’s problems are mental rather than physical is the province of a Psychiatrist or a Psychologist - and no-one else.

Anonymous No 2 writes a post which could have been interpreted as being calculated to have caused more distress to Jojow. Yes, the term “nut-case” can be seen as derogatory. However, there are a lot (like a very large number) of people with a diagnosed mental health condition, to whom the term cannot apply, but there are others to whom it is rather more appropriate.

If, Anonymous No 2, you had had the courage of your own convictions and signed your post, I would be inclined to agree that you had the right to express your own opinion (regardless of the way that you chose to express it). As it is, you have been very harsh toward someone who needs support. This forum is particularly for those in a state of New diagnosis and before diagnosis. If you have been there, perhaps you should have remembered what it was like; if you have not, then take your comments elsewhere, or have the courage not to hide behind “Anonymous”.

Geoff

Hello anon number 2 I don’t think for one minute that jojow meant anything offensive when she said she felt the doctor was treating her like a nut case. I for one didn’t feel offended and I’m a carer for someone with a mental health disorder.

Hi jojow at my follow up with neuro this week it was also suggested that I see a counsellor this was despite the fact that he had asked how I was feeling mood wise and in my life and I had said apart from obviously being fed up with symptoms I was very happy, lovely family/friends and enjoy my job. I had said I couldn’t walk round for more than a couple of hours now, my bad leg was weaker on exam with patches of reduced sensation (then tells me normal neuro exam) and as I say decided to change my migraine meds that a migraine specialist put me on as these symptoms obviously side effects (had before the meds) and I should go and talk to someone about my issues! !!! What issues. So yes I felt how you did. Ax

Thanks arsenal, Geoff and the other person for your input. I was more distressed as I would never intentionally set out to offend anyone and at this present time I’m just very frightened. I must mention that some of my symptoms started after I started taking lyrica which I have also heard can have a negative affect on the nervous system so I am trying to be as open minded as I can. Have also recently found out that a lot of people who have had dental implants have gone on to develop neurological symptoms. Well I have dental implants so I’m going to insist on an allergy test this week. I also realise that doctor google is to blame for a lot of the distress I am having at the moment. Yesterday I was feeling particularly vulnerable and I think part of it was down to the fact that I quit my lyrica cold turkey which raised my level of anxiety a great deal. I’m going to try my hardest to stop googling and leave things to the professionals as I know if I keep googling I will believe nothing I am told. Thanks again for all your messages, feeling a bit better in myself today even though I’m still quite anxious x

Glad your feeling a little better jojow. Your bound to be feeling anxious…it’s quite normal. DoctorGeoff as given you some good advice to follow. Take it easy and try and find ways to relax. All the best for the scan in January…let us know how you get on.