Hello everybody, sorry if this sounds like stupid question but is it possible to have too many symptoms for a condition to be ms? I’ve been having tests for around 2 years now and have been seeing a neurologist. I just seem to be experiencing so many symptoms which are with me all the time and getting progressively worse that I’m thinking it must be something other than ms. Up to now I’ve not had a lot of feedback from the neurologist about what it could be and the worst thing is not knowing. Thanks in advance for any comments.
MS produces a large range of symptoms. They all vary in intensity and some come and go. So it all depends on what the symptoms are. It’s a minefield for a neurologist, so they tread very carefully, and sometimes slowly.
No one want’s to tell you that you have MS only for it to turn out to be something else later on. That would be the worst thing for everyone.
Thanks Anthony, some of the symptoms are just annoying but some are becoming more of a problem, fatigue and leg pain for example. How far down the road do you normally have to go before the doctors offer help with medication? It seems like I’ve just been left to get on with it. Sorry for moaning.
IN my personal experience, MS can do more than one trick at once, but for me they have been very specific things emerging, peaking and receding on a timescale and trajectory very characteristic of RRMS relapses (which is what they turned out to be). For instance, double vision plus loss of sensation from waist down plus loss of power in left hand all variously arrived, peaked and receded over a few weeks/months, but the number of things going wrong seemed to speed up dx rather than delay or complicate it. I think that the way things present is massively important in terms of how characteristic of MS they are considered to be. I had RRMS written all over me, unfortunately, but it isn’t always so straightforward.
I hope that you get some answers from the neurologist soon. Not knowing is horrid, I know.
Hi Alison, so sorry to hear about your troubles and hope you’re doing OK. I’m hoping that my symptoms are getting steadily worse that it is something other than ms which can be treated. When I see the neurologist I always feel like I’m being cross examined as if I have to prove that I’m ill. The not knowing is the worst definitely!
There are specific symptoms that can be treated without a diagnosis. Amantadine is used to treat fatigue and there are several used for neuropathic pain. Ask your GP if s/he is prepared to write a prescription.
However, you will have to wait for a diagnosis of RRMS before any disease modifying drugs wil be offered.
The thing is my gp says there is no pain with ms and advised me to take regular painkillers (paracetamol, ibuprofen etc) which I already tried. My neurologist hasn’t offered any help with the symptoms either. As regards rrms there has been no remission, just steady worsening for at least 2 years-another reason why I’m hopefully thinking it’s not Ms. Thanks for your replies.
Your Dr is an ass!!! No pain!!! MS has a lot of pain, both physical & emotional. Personally I would try & change your Dr. They obviously have no knowledge on MS.
The whole ‘MS doesn’t cause pain’ thing was what doctors used to believe. It is now fully accepted by most doctors, GPs, neurologists and other health professionals that MS does in fact cause pain. Severe pain at time. Which cannot be treated with standard painkillers
However, what I’m picking up on is that you’ve been seeing a neurologist for 2 years, have had several tests and have not been diagnosed with anything, let alone MS.
Have you had an MRI? A Lumbar Puncture? Evoked Potentials test? Or just physical neurological exams?
If you’ve had an MRI and/or any of the other tests and the neurologist hasn’t diagnosed MS, then I would assume you don’t have MS. But if you’ve not had any of these, particularly brain and maybe spine MRIs, then the diagnosis could still be MS.
I suggest the next time you see your GP and / or the neurologist, you ask what they believe is causing your symptoms. If you’ve not had an MRI, ask for one. If you have, then ask them do they think you have MS or something else. I’d also be asking for drugs to help with your symptoms. If you see your GP, try showing them the information from the MS Trust on pain: https://www.mstrust.org.uk/a-z/pain
Best of luck.
I changed Dr’s 3 years ago and this one is much better than my last one. He acknowledges he’s not an expert on neurology but did get me referred very quickly. Iv had a brain mri, lots of blood tests, a ct scan on thorax and abdomen, nerve conduction test. All negative. As yet no spine mri, lumbar puncture or evoked potential test which I would like to have to rule out ppms because of my age. Thank you for your replies.