Advice please

New diagnosis and before diagnosis
1

Hi , i am new here and this is my first post , ill try and keep my background history as short as possible.

I started in March with severe hand tremors , which progressed to pins n needles in both feet, over the months since then things keep progressing , numbness , burning , tingling , itching and pain sensations all on my right leg.

Numbness spread up my right side and then started with the same sensations in my right hand in july, I lost all control of my arm and was unable to use it at all. I have times my ankles feel like someone has tight elastic bands round them, this also happens to my chest area.

I have gradually regained some control in my right arm , although sensations and heaviness in my arm still there.

I have suffered in the past and occationally do now with severe neck pain and stiffness.Walking is very difficult and painful and i am loosing the need to go to the toilet until a sudden feeling of desperation hits me.

I paid to see a private Neuro who wanted , Brain neck and spine mri, i was transferred to the nhs and had the mri.I was then required to have a Lumbar Punture…after 4 failed attempts and also 5 failed blood test attempts , i left there in pain , ill and feeling a failure.

I had the mri results Thurs and have 5 lesions on my spinal cord , several insignificant spots on my brain but was told 1 was in an area that effects balance , which i expected as my balance is poor and had several falls.Blood tests were taken again thurs and have been told a repeat mri on my brain neck and spine in a year. That i thought was fine as i struggled with the mri…but…I was also told he would see me again in a year and wont diagnose MS.

I am worried that im getting no help or outside support and have to wait another year like this? I am unable to take a bath , i cant stand long enough for a shower and feel dreadful!My husband and 2 older sons do all they can for me … do i really have to wait another year like this without any outside help or support or seeing anyone regarding all my ongoing symptoms?

A diagnosis doesnt cause me anxieys and depression … its the feeling that noone is really doing anything to help me.

Sorry i guess my post was longer than i thought it would be x

2

Hi Teresa, Any neurological problem is diabolically complicated to diagnose and with MS the neurologist has to use something called the McDonald Criteria. You can look it up if you want to but it sounds to me as if your consultant feels that it’s necessary to wait to see if anything changes between now and twelve months time, as that is one of the conditions of the Criteria. If so then that will give him/her some of the information he/she needs to make a diagnosis. You shouldn’t feel that you’ve failed because the hospital couldn’t perform a successful lumbar puncture. That’s their failing not yours. I had two “failed” before I eventually had mine completed. The doctors are supposed to be the ones who know what they’re doing not us, but they do have a knack of making us feel that it’s we who are at fault if things don’t work. Regardless of whether you have MS or not you are very welcome to the Forum. There is a huge store of experience, information and empathy here so I am sure that you can get some support while you are waiting for a diagnosis. Best wishes, Anthony

3

Hello Teresa

Anthony has given very sound reasons for the neurologist not diagnosing you right now. He’s right that the McDonald Criteria (see McDonald criteria | MS Trust ) is the basis of diagnosis of MS. It’s a shame that the hospital failed to do an LP, since that might have given the neurologist extra data to work with.

I understand that it can feel more depressing to be undiagnosed than to have a diagnosis of MS. It’s nit that you (or anyone) wants to have MS, but you could certainly do with an answer to your symptoms. Plus of course, drug therapy and an MS nurse.

You could ring your neurologists secretary and ask if you could be referred to the local MS nurse service for support. Also, you could ask if your next years appointment could be brought any closer if you have a relapse or worsening symptoms. You may do better asking this in writing as the neurologist would then need to reply to you in writing, perhaps with more detail as to why not, if the answer is no! If you copied any letter in to your GP, the neurologist would probably have to copy the GP into their reply too.

In the meantime, as your initial symptoms had some improvement, it is entirely likely that the symptoms you are left with will also improve over time. You could ask your GP for a referral to a physiotherapist which might help with exercises to improve your strength and help you recover. You could also ask for an occupational therapy referral, that might help with equipment and guidance as to how you can manage in the home. OTs can provide you with things like ‘perching stools’ for use in the kitchen and/or bathroom so you’re more balanced and safer. You could also see if you can get a seat in your shower, or a ‘bath board’ so you can wash more safely and more independently.

I do hope you improve over the next months. Sometimes improvements sneak up on you so slowly that you hardly notice you’ve improved. Try writing a diary to track your various symptoms. If you think back to the beginning of your symptoms and try to work out what happened and when it can help you to feel more positive. And keeping a record of what happens over the next year will help enormously when you see the neurologist again (unless you do manage to see him sooner).

You can continue to ask questions and get some support from us on this forum. Both the more experienced and other people in similar situations to yourself will try to help out as you have thoughts and queries.

Best of luck.

Sue