Frozen and numb

Just spoke to Drs receptionist who said there’s MS nurses in the area and my local hospital can’t help and I have to wait until my appointment comes through from Liverpool. I tried to make a Drs appointment for tomorrow and was told No I’d have to ring first thing in the morning like everyone else. So that’s what I’ll do .

Well if that is good enough for you, then good luck with it.

Personally, the receptionist can go suck an egg; if I were feeling crappy, worried, anxious etc, i would be straight down the hospital to speak with those who give a 5hit!

1 Like

Bloody hell, the NHS has gone mad! I’m so sorry for what you’re going through. I’m afraid I’m still of the opinion that you need seeing urgently by a neurologist. The particular symptoms you are experiencing are most probably transverse myelitis, which is fairly rare, and will require treatment with steroids. It could also be something else. Just because you have ms does’t mean your symptoms are automatically due to that. There is another neurological condition which begins with an ascending neuropathy and which requires URGENT neurological treatment. I saw a few people with it during 30 years in Neurophysiology, most of them in ICU. Please, please go to A & E. I know it’s scary, but less so than being paralysed.

OK, so what you can do in the meantime is get your husband to go to the Transverse Myelitis website (it should be your husband so that you don’t worry yourself any further, the aim here is to get your GP to take action) print out this page Symptoms and diagnosis and take your husband in with you to the appt tomorrow (important to have a witness)

Tell the GP it is travelling upwards and that you think it is thoracic or cervical TM.

My GPs were honestly quite shocked when they realised they’d missed diagnosing me, so don’t worry about seeming to question their opinion. My experience now is that if you raise the possibility of your symptoms matching a specific condition, they will take action.

I know you don’t feel like being assertive, you just want to be taken care of, but I’m afraid the reality is that you have to be pushy because most GPs will never see a case of TM in their whole career.

Personally, I would still go to A&E and be very assertive when I got there, although when I was in your position, I didn’t. But I would now. Benefit of hindsight, so not a criticism of you.

Hugs, cos I imagine you could be feeling worried, frustrated and maybe a little bullied by people like me telling you what to do! We mean well, honestly we do :slight_smile:

Sorry Sarah, don’t mean to scare you, but they need to take action. Transverse myelitis requires treatment sooner rather than later, (and Guillain-Barre even sooner.) Hope you can get someone to take notice.

I was diagnosed with MS 14 years ago after MRI scans so wouldn’t they have noticed if it was transverse myelitis 14years ago ? Thanks. The neurologist at Liverpool hasn’t got my referral yet and there annoyed my doctor didn’t fax it as it’s urgent… Mind is so confused…

1 Like

It wasn’t transverse myelitis then, it’s something that’s only just started. Don’t worry, sure you’ll get sorted. X

Also, and this is really important, if the neuro wants you to have an MRI for diagnostic purposes, they won’t want you to have taken oral steroids beforehand, so this is another reason you don’t want to mess about with going to the GP. The GP can’t do anything for you except give you steroids and make an appointment for you to have an MRI in about six weeks time. You need someone with experience to dx it now.

So yeah, I’d go to A&E and tell them you have symptoms consistent with GBS and thoracic TM and they are spreading upwards. Insist on seeing a neuro, not just the duty A&E doc.

I’m not just saying this, I would do it. I have a hospital bag next to my bed packed all the time just in case, and my husband agrees, this is what we do if it happens again. No messing about, it isn’t worth it. If it goes while you are waiting to be seen, well, that’s great. If it carries on, then you will be in the right place and not worrying at home.

I’ll shut up now.

Probably.

1 Like

TM is just the name for a lesion on your spinal cord. It can be there because of MS, or NMO or an immune reaction to an infection, or more rarely other autoimmune conditions. It is confusing.

(I knew I wouldn’t shut up, but I will now!)

How are you feeling?

Thanks,I still feel frozen below the waist and numb above the waist and my right leg has a mind of its own.