I have posted on here before when in need of advice and found you guys have come through, so I thought I would put my situation to you to find out what you guys think.
I was diagnosed (Properly) in June. I have been offered Tysabri but refused and accepted interferon injection instead which were made avaliable to me in September, I have however not started these injections due to a sinus issue which I didn’t want to make worse with the side effects from the injections which in hindsight may have been a mistake as I still have the sinus issue after 3 months of anti-biotics, ENT have seen me and given me a CT and an allergy test due for January.
I have not had my flu jab this year due to being ill and on antibiotics at the time of it being offered, I have discussed this with my nurse who understood my reasons for being apprehensive and supported my reluctance to start interferon injections whilst my sinus problem was ongoing but it has dragged on and I am still ill with sinus issues and my MS seems to be on the attack as I have just had to go to emergency eye clinic and had confirmation of a second attack of optical neuritis, the first attack took my sight in my right eye so I am terrified that going blind is a very real possibility.
I have been given steroids and told to come back in 5 days, they did discuss admitting me for intravenous but decided against that, my neurologist was apprehensive to give me steroids as it would possibly make my sinuses worse but then obviously losing my sight is a bigger issue I guess.
I have never felt secure in my care from Doctors, they left my eye last time and it never came back, it took them a year to half ass diagnose me, then 3 months to confirm diagnosis then 2 months to offer me treatment even though I have been offered the more aggressive treatment, I was told that my symptoms were probably stress related and just got thrown about from pillar to post.
I just need some reassurance really, some advice, some similar stories? That would be great if anyone could provide that, totally sucks so close to Christmas.
I also wanted to add that I have a ridiculously severe anxiety disorder and OCD which is really playing up right now and making life extremely difficult to progress with? And can make me be very apprehensive about taking meds and seeking treatment…obviously I am trying my very hardest to fight that as well at the moment…
It think the thing I find difficult is that my psychiatrist doesnt know much about MS (he said… 'but you look so well!!!), and my neurologist doesn’t know much about OCD… so whichever one I end up seeing, they always seems to misunderstand the other condition! And then I get frustrated thinking ‘its really not my job to explain medical information to highly paid pedical proffessionals’ o.O
One of the most frustrating things about OCD is that, even though you know thoughts might be irrational, it is difficult to change them. But people with OCD tend to have very good insight into the fact that their thoughts are irrational. But the first neurologist I saw seemed to find this really difficult to comprehend. He saw the diagnosis OCD, and then kept telling me 'obviously, we know you have obsessive thoughts and it is likely this is the cause of your symptoms". I kept trying to explain that yes, i get obsessive thoughst - but not necessarily about things like MS… and that I am usually quite aware when I am having irrational thoughts (I just can’t stop them!), but with my physical symptoms of pain etc, I did not believe my thoughts were irrational. He found this incredibally difficult to get his head around!
I honestly suspect that the people who are most likely to confuse anxiety with physical symptoms are people who are not used to suffering from anxiety (and therefore are not used to how powerful anxiety can be - and don’t recognise the feelings; people who have their first real panic attacks in middle age, and have never had them before, and therefore dont straight away recognise what they are) OR people who are reluctant to acknowledge / accept that they have anxiety (maybe through fear / stigma / just not being able to accept that mental health difficulties could happen to ‘them’. ) However, people who are ‘used to’ or even just able to accept their own anxiety states are actually (in my opinion! ) far less likely to confuse anxiety with physical health problems… because we are used to what anxiety feels like, able to ‘own’ it, and are usually quite good at distinguishing it from other things that might be going on. Unfortunately, not very many people seem to agree with me… lots of people (even medical proffesionals!) seem to see the diagnosis of anxiety / mental health etc, and then conclude that that is the root of all your problems. It is labeling at its worst!
It gets really tricky when the physical health stuff and mental health stuff start to effect each other… obviously MS stuff is highly stressful, and if you have OCD etc, it can trigger / worsen an episode.
I don’t really know what to advise, or what to say to help, other than that you are not alone in this situation, and that I think it is really important that people speak openly about this sort of thing xxx
I am a person who has had optical neuritis twice and i also suffer with anxiety so i can sympathise.
It sounds to me as if you are scared of starting the injections and are possibly trying to put it off.
By putting off starting the dmd’s you are taking the risk of the ms doing permanent irreversible damage. Why would you do that?
In ‘my opinion’ you need to start them as soon as possible to give yourself a chance of slowing down the relapses in severity/frequency.
The sinus issues are a separate problem and the doctors will help you sort this out but it is possible the ms will continue to be active. Don’t let the ms take any more from you and hit it hard with the dmd’s!
I am on rebif myself and have done well on it for 8 years. My ms is stable at the moment.
Please try to speak to your ms nurse or gp about your worries and about your anxiety/ocd issues and she will be able to help move you forward in the treatments.
Flu jab - 3 years ago i missed my flu jab and was really ill as i got the flu - please go and get it done. (my husband takes me because of my anxiety)
I don’t know much about tysabri but i just wanted to say lots of people have found it to be a really good treatment. They would not have offered this to you if they didn’t think it was the best possible treatment for you.