Struggling to Find a Diagnosis

New diagnosis and before diagnosis
1

Hello all,

I would appreciate any advice or examples of experiences in relation to my issue. I know that it is not an uncommon problem that many people have to deal with.

I have been having strange symptoms for a few years (I think about 4 years from memory) which come and go every few months. Each time, they last between 3-6 weeks.

My main symptoms which are present almost every time are:

  1. Sharp pain in my upper arms which makes my arms weak and difficult to lift above shoulder height. This pain is sometimes present in my left arm, sometimes in my right, or sometimes in both arms.

  2. Rib cage pain which feels as though someone has placed a really tight, thick elastic band around my torso which makes me feel bruised and tender.

Symptoms which are present most of the time during the 3-6 weeks:

  1. Pins and needles in left side of body, particularly in fingertips and toes.

  2. A feeling of intense cramp in calves or thighs which doesn’t go away for days at a time and nothing seems to relieve it. It feels as though it’s seized up. Very tender!

  3. A feeling of intense tiredness that lasts for about half an hour where I feel as though my eyes are going to roll back in my head and my legs will give way then it just disappears and I feel fine again!

New symptoms which have only been present during the most recent period of symptoms:

  1. Aching wrist which resulted in wearing a wrist support for a week.

After a long time of experiencing these things but not thinking anything of it, I decided to do a bit of internet searching which I know is sometimes not very helpful! I eventually stumbled across MS related information and spoke to a family member who has MS herself (though she is not a blood relation). She advised that I call my doctor.

I rang my doctor and he said that he can’t see any patterns, links between the symptoms or any causes and that maybe I should just ‘see how I go’. This felt very much like a ‘shut up and go away’ answer. At this point, I started keeping a diary of my symptoms. I then rang a doctor again after a few months of keeping the diary. This was a different and slightly more helpful doctor who suggested blood tests and nerve conduction tests but said that I would struggle to get an appointment due to the pandemic and that he didn’t really think there’s anything wrong anyway. He did ask me some MS related questions such as ‘Do you make it in time for the toilet?’ Or ‘Do you lose your vision?’ I understand that these symptoms can be common first signs of MS but aren’t always present. Therefore, I feel as though he just quickly ruled out MS as I answered no to those very specific questions.

I know something is not right. I avoid the doctors as much as I can so the fact that I have had two appointments this year speaks volumes about how worried I feel. I have considered booking a private consultation but don’t know if it’d be worth it.

Any suggestions for next steps? It might well not be MS but something is wrong and I need to at least rule out MS and hope it’s nothing even more sinister or difficult to live with!

Thank you so much in advance… I’m really struggling!

2

Hi there. I also think there is something wrong and it should be investigated further.

And as for your doctor asking 2 questions about possible MS…well that`s as much use a chocolate fireguard!

Yes, appointments are sometimes harder to get due to the pandemic, but that shouldnt mean we cant ask for one!

There are so many neurology related problems, that I wouldnt focus too much on MS.

But you do need to be referred to a neurologist.

Paying privately would cost around £200 and would include an initial consultation, but it wouldnt cover any tests.

I began my journey in 1999 and saw a private specialist, who then transferred me to his NHS clinic.

Good luck.

Boudsx

3

Hello

To an extent, I agree with you and with Boudica, you have symptoms which need checking out. As to whether they are neurological or actually MS, that determination rests with the doctors.

You put it that you need to ‘rule out MS’. Boudica said you should see a neurologist. Yet your problems may not even be neurological.

What a (good) doctor should be doing is considering all the symptoms you’ve had, looking at the frequency of these attacks and the length which any one symptom stays with you. Then they can decide to which specialist you should be referred. Given that you have highlighted MS, and you have found your way here, it seems reasonable to see a neurologist initially, but really, your GP should be made aware of your problems and really consider what they think could be the cause.

GPs are still doing their jobs, even through the Covid pandemic. It seems though that you’ve encountered 2 rather indifferent doctors, I think you should phone them again and ask for a referral to an appropriate specialist. Most likely a neurologist since GP #2 thought you should get blood tests and a nerve conduction test.

The minimum the GP should be doing is getting some blood tests sorted. Sometimes people have vitamin deficiencies that give symptoms that resemble MS or other nerve related problems, in particular, vitamins D and B12. The GP could get these checked out. Equally, there may be a delay in getting appointments, but a referral to a neurologist at least gets the ball rolling.

Private appointments, as Bouds points out, don’t cost the earth, but neurological tests do. As in fact do blood tests. An MRI scan will cost hundreds, even just for a basic brain MRI without contrast dye, never mind the whole spine. Nerve conduction tests, lumbar punctures, visual evoked potentials are all expensive. There would be little point in seeing a private neurologist unless you have the money to pay for all the necessary tests. Even then, a private doctor is likely to suggest you get the bloods done on the NHS. Plus, to see a private neurologist, you still need a referral from the GP.

So, in short, I think you should go back to the GP, together with your diary and perhaps a synopsis of what has been happening to you. Ask whether the GP thinks blood tests for vitamin deficiencies would be sensible. And whether s/he can refer you to whichever specialist they think most appropriate.

Keep in your mind that a good neurologist won’t be looking to rule in or out any specific diagnosis. Instead they’d be looking to see a) if there is a neurological cause to your problems, b) what that cause might be, and c) what tests are appropriate to check.

Best of luck.

Sue