Hi all
I was wondering if anyone could give me some advice.
Basically my husband woke up around 3 weeks ago with numb feet, over the last 3 weeks it has got progressively worse and started to travel up his legs. In the last few days the tips of his fingers have started to go numb also and he is incredibly weak.
He has been to the GP, had bloods done and they have all come back clear, the GP referred him to A neurologist.
My question is does this sound like MS and how long are we going to wait before we see someone. I am absolutely petrified and don’t really know what to say to him.
Thank you
I am sorry that you are both having such a worrying time. I have no idea what the waiting times are like where you are, but there’s generally pretty awful, I’m afraid. Assuming the GP has done an urgent referral, it will be a matter of finding out what the waiting times are in your area and making sure the consultant’s secretary knows that your husband is ready to drop everything to get there if there’s a cancellation.
As for whether it’s MS, I have no idea. For what it’s worth, my personal experience has some similarities. But that means little - I know a bit about my own situation, but not about anyone else’s. You need an expert opinion.
As suggested I would find out the waiting time.
Unfortunately it is likely to be a while.
If you can afford it or have cover via your husbands work would he consider going private ?
I did this to get my first MRI 3 years ago as my GP wasn’t interested and I was then transferred to my Neurologist NHS list.
Only a Neurologist can diagnose MS.
Good luck and take care
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I did the same 20+ years ago. I had private cover with work. Particularly if the waiting list is long, it can be a time saver, no question. But even nowadays, if someone’s in a lot of trouble, the NHS can sometimes get going reasonably fast.
As Others have said, the wait time varies from health board to health board and unfortunately you will just have to phone to find out. Similarly, on symptoms- they could be symptoms of MS but I’ve no idea if they could be symptoms of something else.
Thank you everyone for replying. It has only been almost 4 weeks but I would say he’s rapidly declining. He was almost unable to walk this morning.
He managed to get going but it took everything he had.
I will call the GP and see if she did an urgent referral and then get in contact with the consultant and let him know if there are cancellations he will be there.
Sorry another question for those who were waiting a long time. Did you keep deteriorating as time went on? Did your symptoms get worse ?
Thanks again
Lauren
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That sounds horrid, I’m really sorry. I’m afraid it pays to keep up polite but steady pressure on clinicians to get things moving. Even then, it is sometimes frustratingly difficult to make progress. It is a blessing to have a calm, steady, persistent spouse on one’s team, that’s for sure.
On deterioration, I think a lot of us who turn out to have relapsing-remitting MS (the most common sort to be dx with and the one that is characerised by acute attacks followed by partial or even complete recovery) find that, on the contrary, many of our initial symptoms have started to subside by the time we actually get to see the hospital doctor. But hospital doctors are very used to that, of course. But that isn’t to say that things can’t get worse before they get better, and it isn’t easy to tell that one has turned the corner until it happens. All I can say is that it is a great relief when that moment comes.
Remember that there’s always 111 if things get worse and you’re worried. I wouldn’t wish a stint in A&E on anyone, but if he’s in real trouble it’s always there as a last resort.
Thank you so much Alison for your reply.
Such a worrying time. We don’t know if it is MS but all the signs and symptoms are presenting, so I can only assume it is. I want to do as much research and find out as much as possible about it.
We have just found out it’s a 57 week waiting list for urgent referrals which was a bit of a blow.
We are looking into the private route but have no idea of costs, I wasn’t sure if a consultation would be beneficial or not.
Any way I’m keeping calm and carrying on 
x
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Hi Lauren, just to echo what Alison says and also to say that if your husband continues to deteriorate rapidly over the next week then I would go back to the GP. I am absolutely no expert but from what I understand MS comes on with relatively sudden ‘relapses’ and symptoms from which the ‘patient’ slowly recovers but is left with some residual damage. Others might offer a different view but I haven’t heard of a relapse getting progressively worse over 4-5 weeks. I think if it was me I would tell the GP that things are getting worse and worse
Hi Lauren. Just thinking about the 57 week wait - which is ridiculous- have you asked to be referred to a different hospital or health board, as is your right . If it is MS then the general guidance is to start treatment as soon as possible so I would push the GP on that . Waiting for over a year for a diagnosis is not acceptable and there must be other hospital’s with far shorter wait times for an urgent referral!
I’ve no idea what wait times for A&E are like in your area/ hospital but if it’s not possible to get any MRI in the near future then I would try an find out the likely quietest times and go to A&E.
P.S the MS Society wants to gain a picture of issues to take to prospective candidates at the next election and is inviting details of personal experiences. I would think that waiting over a year just to get an MRI for suspected MS is a prime example of issues that we would all like to challenge MPs on.
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Thank you so much for all the info Hank.
He is planning on going back to the GP on Monday, hopefully that puts wheels in motion some where. If that fails then I think it will have to be a stint in AE.
57 weeks is absolutely horrifying and such and unfair time to be left in pain and worry. If there’s anything I can do to help please do let me know.
Thanks again for replying
Awful waiting time. Private route does sound worth considering, as claret57 suggests.
A quick google of your nhs trust and your local private hospital will tell you which neurologists do both. Your gp should be able to advise also on who you want to see.
Sorry to hear of your plight. I hope it all gets resolved positively for you.
I was quoted a 45 week waiting time to see an MS Neuro in 2018. I was in the fortunate position to be able to go private and was seen literally the following day. If that is an option and i was in your position I’d look into that. Good luck.
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