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2 steps forward 3 steps back

Hi Everyone,

Im really struggling at the moment and hope I can get some guidance and advice from you all.

Quick history

i have had a concoction of ailments over the past 10yrs and have been diagnosed with a few different ailments. In 2012 I lost the sight in one eye for several weeks. My GP then suspected MS and sent me to neurology. I was promptly discharged in 2014 (long waiting list).

The once again lost the sight in my eye accompanied with severe loss of feeling in one side in 2016. I was once again sent for an MRI. This time I’m told that I fulfil the McDonalds criteria and have several lesions in bran and spine. How ever they would like to watch and wait. Had a follow up in 2017 and once again told to watch and wait.

Had a follow up this year after 3 episodes of ON and several other worries numbness, pins and needles, severe exhaustion, dizziness, severe hiccups when eating neck spasms, sudden onset of severe Reynolds syndrome and severe digestive problems . Although many of these problems are quite generic the ON was diagnosed by the hospital Ophthalmologist and I still had damaged sight .

So at my appointment I have been told they would once again like to watch and wait another year and no more tests are needed.

When questioned about my sight I was told I may have to just get used to it and the other things are “clearly not neurological so no need to worry”.

I was not expecting a diagnosis of any kind today or in the near future as I know these things take time. I was however expecting some help and reassurance that I may not lose my sight. Instead I have come away feeling like I have wasted his time and I am a hypochondriac.

What can I do next? Do I just wait? I can’t understand if I fulfil the criteria how can I now just be left to struggle?

im so sorry for whittling on but this has really got to me this time

Thank you for listening.

I’m not a one for urging second opinions, but in your shoes a second opinion would be what I would want. Your GP should be able to help with a referral to an MS specialist neurologist (or a different MS specialist neurologist, if your person is one).

There’s nothing wrong in principle with ‘watch and wait’ - I was happy to accept advice to do that myself at one stage - but the next time I rolled up with further neurologist trouble, it was all systems go: I was scanned, LP-ed and dx-ed before I had taken my coat off, more or less.

Obviously, I know nothing about your situation and your neurologist does. And your neurologist is a highly-trained expert and I don’t possess a biology ‘O’ level. My views are uninformed, totally unscientific and based on my personal sample of one. In other words, take them with a massive pinch of salt. But I still think you should get a second opinion.

Alison

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I agree. A second opinion would be helpful. It’s all well and good to watch and wait, but if you do that, have more symptoms and are still told to wait, then the time does come when another MS specialist neurologist might be necessary. Getting on to a decent DMD is supposed to be the first step these days. Preventing further relapses is the key.

Sue

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Thank you for your replies. I was More than happy to watch and wait for any further diagnoses. What really upset me was that my symptoms are in my head and that I should learn to live with losing my sight for no reason. He even told me not to bother going to the eye clinic as it’s a waste of everyone’s time even though the ophthalmologist said I had another reoccurrence of optic neuritis and to come back again if it returns.

Mot honestly feels as though he has made a snap judgement on me for no reason. How can I have leisions in both brain and spine, fulfil the criteria, 1 year in keep getting symptoms and be told nothings wrong and to deal with it. Surely at the very least me eyes should be treated? Should I go private? Or would this not be beneficial? He is the only MS neurologist in my area as far as I’m aware in NHS

Any suggestions greatly appreciated thank you

Hi Anon, you really need to change Neurologists.

I began with a bad experience: my 1st MRI showed lesions & cerebral vascular disease in 2005, it took until Nov.2011 to have diagnosis of MS, then a few years later, PPMS confirmed.

It turned out the Neuro had mislaid my file! I changed hospitals & Neurologist. Everything got sorted quickly, more MRIs, Tests etc introduced to other areas of support - Occ Health, MS Club, Continence Service and lots more.

Obviously, no-one would choose MS of any type but if you have sufficient evidence, then it’s best to know as early as possible, so that medications to help you can be prescribed.

Perhaps you can ask your existing hospital for details of other Neurologists they have, or who they can suggest via NHS. At this stage, private treatment will cost a great deal of money. All the best,

Chrissie

Quite frankly I’ve had a bout of ON and if I suffered another I would go to the ophthalmologist. After all there are loads of reasons for ON. I can’t believe that a medical professional has actually said that. Have you been tested for NMO? If it’s not neurological what is the cause and doesn’t that contradict the fact they told you that you meet the criteria for ms. Have you spoken to your GP maybe he can advise or refer you to another Neuro. Good Luck.

I’m a bit confused. If you fit the McDonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria then you should have an official diagnosis of MS. If that’s the case, and you’ve had at least 2 relapses within 2 years, then you qualify for disease modifying drugs: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/disease-modifying-drugs

So your neurologist is wrong to be saying ‘watch and wait’.

In which case, I would suggest you a) see your GP and ask for help in getting the DMD you qualify for, and/or b) contact PALS (Patient Advice and Liaison Service) at your hospital.

If you don’t fit the McDonald Criteria, but every time you see the neurologist, having had optic neuritis, or some other symptom indicative of a relapse, I would expect the neuro to have another MRI done, to see if you now fit the McDonald Criteria.

Chrissie is right that going private at this point would be expensive. It would also mean starting from scratch all over again.

If there are no other neurologists within your CCG (Clinical Commissioning Group, what replaced the old PCTs) then you may be stuck with the one you have. But at least ask for advice and assistance from PALS.

Sue