Im struggling a little bit atm. Im full of self-pity and fear and empty of hope. Last year, I lost my marriage, home, job and health and am struggling to pick up the pieces. Well tbh the pieces are all still on the floor and more pieces seem to be joining them. Ive got ridiculously loud multi-tone tinnitus, hearing loss and ETD, visual snow, blurred double vision and other visual intrusions, muscle pains and spasms, a swollen purple leg, and a foot which has become more and more painful to walk on. I was recently diagnosed with Raynuad’s Syndrom and it looks like I have also managed to pick up rhumathoid arthritis. All this after having been as far as I know 100% healthy in 2015. Ive had two brain MRis but I cant get the hospital in Wales to get the MRI from 2016 from London. The recent MRI showed a lot of lesions “consistent with demylinating disaese”. Ive had a recent VEP and am awaiting the results. They want to do a spinal MRI but Im hesitant, as the last two MRIs seemed to make the tinnitis worse. I already have more noises than I can really cope with and dont want any more joining the orchestra from hell.
I also developed severe depression as a result of all this and find that this has led to some loss of respect on the part of the GPs. I had to push for the MRI and am still having to push for things to be resolved but I dont really have any strength left to push. With teh noises and visual intrusions I feel like I have not had any peace for months and now never will. I feel exhausted and like Im haunting the places where i once lived. I use to be a very happy active person and now I mostly think about how I have ruined my life and how I could have taken this or that alternative path. Like one different turning, however small, might have left me somewhere different to where I am now, which is starring out of the window and wondering how I threw away the one life I have. Im writing some research articles butt they just dont read how my articles us to read. Its like they have no sparkle, no real depth, and just state the obvious at length, as if my mind really has no idea of what it wants to say.
Bob my heart goes out to you, you sound so down and depressed is there nobody you could talk to and you know will support you through this, i am sure your gp does understand and tbh if they don’t the fault lies with them and i would suggest you see another. Have you tried the ms society helpline ? they are the people in the know and i am sure they will have had people feel just like you do previously. I also think you may benefit from an ms nurse that you could contact if you are having problems. Sorry i can’t offer any further but hope you are feeling better in yourself soon x
Thanks very much Sue. I might phone up the MS help line. And, like you say, I wont be the first to have got quite down as a result of this process. I’ll probably be ok. Just have to weather this mother of all storms. And there are a few positives. I would never have tried ginger tea without all this. And Im happily slurping a cup as I type.
With what you have said Bob, it must be difficult to search for the good. It sounds like you have had an awful time, and you most definitely have not deserved any of it. I’m sure a call to the MS helpline will be a good start for you as having someone to talk to is always a wonderful thing.
I wish you all the best, and i would suggest following Sue’s advice
D’you know, I was thinking about you earlier today. I was wondering how you were and whether the noises had got any better.
I’m so sorry they aren’t. You really are having a truly cr@ppy time of it. And there doesn’t seem to be any let up for you.
If your last MRI showed several brain lesions and you are considered to be experiencing a demyelinating disease, then surely they don’t need a spinal MRI? Have you had a lumbar puncture? And the results of the VEP test should show up some other evidence.
Surely there are some treatments or therapies to help with the bloody terrible raging tinnitus? Not to mention the visual and aural issues. It’s no wonder you’re depressed, you’ve had such a shitty year (sorry mods but it’s true).
I really do feel sorry that there’s so little we can suggest to help. Just know that we do care and I for one have been thinking about you. And there is never a need to apologise for needing a rant.
Thanks for reply. Hope you doing ok. I think I will call the helpline. Ive kind of avoided it as the tinnitus has made talking on teh phone a bit odd. That and not hearing so well. But I guess they will talk up if I ask them.
Thanks Sue. Hope u doing OK. This site does help a lot, especially since it is so welcoming to ppl in limbo land as well as those who have been diagnosed. And thanks for your thoughts and kind words. It is really apreciated.
Hi Rupert So sorry to hear about your troubles mate. I’ve pm you with my troubles and queries in the past few mths so hope you know you can do the same. I may not be much help but sometimes getting it all out to someone helps a bit. The helpline sounds like a good starting point, considering the same myself. Anytime pm me, I’m on here most days trying to get myself through this difficult time. Keep strong James
Thanks for your reply. And for your kind offer which Im sure that I will take u up on. And please feel free to do the same anytime. For me it really does help talking to understanding ppl inhabiting the same sometimes frightening limbo land. Hope u doing OK atm. I went to a support group yesterday despite not being diagnosed and they were all really friendly. I even bought a raffle ticket for ÂŁ10, won a bar of chocolate and then had to give it away on account of having started no dairy diet.But I guess at least I won!
I should have got my VEP results back this week but seems nuero has gone on holiday and nobody else can give them to me, which sounded a bit ominous but might just be procedure. Probably sailing his yacht amongst the carribean islands without a thought for the party going on in my subcortex. As long as he comes back in good and helpful mood.
I am new to this forum thing although I have been diagnosed with MS since 2006 and been told I may have had it for 25 - 30 years before that.
My consultant is leaving the NHS soon to work solely in the private sector. Before last August when I saw one of his team, I had not seen an MS doctor for over three years. My GP knows very little about MS.
I am joining this forum now because I feel so down and alone. Nine weeks ago I saw my neuro - consultant who told me I didn’t have Benign MS, now it was SRR MS and he wanted to put me on Tecfidera, a disease modify drug. He told me to go away for 6 - 8 weeks and think about if I wanted to go on it and find out as much as I could about it and its effects.
Today I got to see him again, I took all my research and notes but never got to take them out of my bag. He told me that he had looked at my MRIs and other doctors’ notes and told me that I have Secondary Progressive MS. He said that he had no treatment for me. I am already on Amantadine for my tiredness and Gabapentine for my tremors.
I spoke to my MS nurse on Wednesday. She is only contactable on Wednesdays and Fridays and then only by leaving a message, which she doesn’t always respond to. I feel so alone. I was shown a life line which was then snatched away.
After I left his office, fighting tears, I felt so shocked and abandoned, now I feel angry.
Please offer kind words of encouragement as I am feeling rather vulnerable too. I know many other people must have experienced this type of roadblock.