Hello all, So below is a post I made back in 2018, outlining some concerns I had at the time, now since all of that happened back in 2018, I was due to see my consult back in December 2019 but low and behold as I expected he cancelled my appointment and now getting hold of him or his secretary is near impossible and she just says he will write to me in the future. I have just seen my GP as I’ve been having issues, apologise in advance if this is T.M.I, with erectile disfunction, constant pain and spasms and blood in stools and difficulty passing them, my GP initially thought just basic ED and possibly something wrong with my bowels so has ordered endoscopy however upon looking further in my medical history has noticed the previous diagnosis of CIS and has now said it is all linked to MS. Now if this is the case that would surely be classed as a relapse and therfore no longer a diagnosis of CIS but instead MS and the support that comes with having Ms should be in place but he’s just told me it’s MS related and left it at that. Please can someone give me some sort of advice? Thank you in advance! My post from 2018 Good evening, I have just seen my neurologist for the second time in 4 years and it seems like he just doesnt care. The back story to my problems is as follows, in 2014 i woke up one day paralised from the waist down, lost control of bodily functions and spent 6 weeks in hospital., during this time i had multiple xrays, ecgs, a full head, spine and back mri and a lumbar puncture which i was told all came back fine. I was discharged when my symptoms aleviated and told they could never find a cause. Fast forward to 2017 when a nurse told me at a routine appointment i had Cauda Equina that was diagnosed in 2014, i quized her about it but she wouldnt say more and told me to see my GP. My GP told me she was wrong and that i had actually been diagnosed with GBS. After more tests another dr reviewed my tests and said i actually had MS. Full blown panic ensued. I was refered to a neurologist who back in May this year told me that actually i had been diagnosed with CIS, he ran reflex tests which showed as slightly weakened but nothing too bad, he checked all the results, the MRIs showed lesions and the lumbar puncture showed proteins present which coincide with MS and therefore i had CIS. He ordered a new MRI which i got the results from and this showed that there have been no new lesions developed since 2014 but the original ones are still there. He tried to discharge me but i protested and he agreed to review me in 12 months but that i could ring his secretary if i had a relapse. Since 2014 i often have problems with weakness in my legs, difficult standing for periods of time, back spasms and pain and lately needing to urinate more and more frequently. My anxiety about the whole thing is getting worse and i feel like im just not getting anywhere. What should i do? Thanks Lordy
Hello Lordy
Rest assured, on this site there is no such thing as tmi. Many of us suffered various problems in silence for years so it’s all good that you are able to confront what might seem embarrassing for some people. (I spent years being too shy and embarrassed to come clean about a whole load of problems, with the result being that I had to get a whole lot worse before I could get better.)
It does indeed seem that if you were diagnosed with CIS previously and have now suffered at least one further relapse, that would cause the neurologist to rediagnose you with MS.
However, in the light of Covid19, many appointments are being cancelled or postponed. This is presumably what’s happened recently although it’s a #@! shame your December appointment was cancelled (to say the least). No wonder your GP has decided it’s MS related and thus nothing they can help with.
Although the last statement of: ‘nothing they can help with’ is untrue. Even if you and your GP accept that you have officially undiagnosed MS, although it’s highly likely your symptoms come from that cause, there are things the GP could do.
For example, ED. It may be caused by MS, but the treatment of the symptom is the same regardless of cause. Your GP could prescribe for eg Cialis, a common drug for ED. Pain and spasms can also be treated with drugs; neuropathic pain can be treated with a drug like Amitriptyline, this is something the GP could prescribe. Equally, if your spasms are of long standing, a low dose of Baclofen could be prescribed. In terms of your bowel problems, this is something that should probably be explored further, although if the blood in your stools is caused by constipation, this could be treated with a small amount of something like Movicol. I can’t imagine a GP would want your bowel trouble just ascribed to MS and ignored, or treated with a laxative without further investigation.
So, in short, I think going back to your GP is the answer. Getting a phone appointment with the GP to discuss symptoms and what can be done about the specific issues you face could be your next step.
You should also get back onto your neurologists secretary and ask what you are supposed to do in the meantime? You can clearly get GP advice on symptom management, but essentially you need the input of a neurologist to formally diagnose you and to discuss things like disease modifying drugs (DMDs) to attempt to ward off further relapses. You should also ask the neurologists advice for all of the symptoms you’ve detailed here.
Hopefully my reading of your issues and suggestions are useful to you. If not, feel free to discuss further and/or ask for more input from others (particularly from men with ED!).
Sue