So i finally built up courage to post as im simply so low and feel in limbo Ill try to explain as briefly as poss so bear with me please…
In July 2015 my vision and orientation became very bad ( blurred double vision, and couldnt walk in a straight line ) this got worse over a few days and i finally went to see my GP, at first they thought possible TIA / Mini stroke but then possibly labrythitis.
I was referred to a a neurologist / registrar who did some tests and felt unsure and decided on an MRI scan to try and work out what was wrong, after the MRI i returned for my results and was seen by a duty doctor ( not a neurologist ) who promptly sat there and informed me i had MS and also small vessel disease. As you can imagine this came as a massive shock and was very traumatic for me and my family.
i was then told i needed a lumbar puncture to see what level etc and a more accurate picture of what was going on, i did this and then finally got an appointment with the senior neurologist, he showed me my brain scan and then told me it was a mild brain infection / inflammations and gave me 5 days of steroids ( 500mg per day for 5 days )
As you can imagine i felt a huge weight lift and was very happy that i didnt have MS or small vessel disease and took the course of steroids expecting improvements and to get well.
This did not happen and whilst there was a small improvement iin my co ordination and vision i still did not feel right, this went on for some time before i finally decided i needed to see the neurologist again, i explained my feelings and symptoms and that nothing was improving, he decided that its almost definitely MS and to have another MRI and another course of steroids for 5 days.
Im returning for the MRI in a couple of weeks, however over the last few months i have become extremely depressed frustrated and down, i cannot focus on anything for long and have no energy or get up and go, I have been signed of sick for a long time but money is tight beyond belief and the whole thing is taking a massive toll on my well being, i went to a GP yesterday and broke down in front of him, he gave me some anti depressants which im going to try but i just feel i have no where to turn.
Im in debt and have no way out of everything and no where to turn for help ! Im sorry for voicing all of this but im hoping someone can point me in the right direction for some help or where i can go to talk
I have been in your position for 5 years. MS - maybe? Definately Not, probably Not, Possibly Yes, Transverse Myelitis, Radiation Myelopathy, Maybe NMO and finally Now as of January Probably MS. I am now going for another LP as first two were negative for MS. (10% of pwMS have a negative LP). Was your LP negative for MS ?
Neurology is a guessing game. There is no definite test for MS which show positive or negative. It seems to be weighing up possibilites.
I have an unusual presentation but the neuro that I have just seen basically said that it is probably an unusual presentation of a common disease - rather than an uncommon disease. Also they do tend to favour one disease over 2.
Be prepared for a long wait and try not to worry too much as there are effective treatments out there to stop relapses and control the disease.
Going back to work may be the best thing for you to get your mind on something else.
Thank you for your reply, and wow 5 years is a long time ! Am sorry to hear your in that position So far all the tests they have done have been borderline so inconclusive, but clearly there is something wrong !
As much as i would like to go back to work and try and live normally as possible but my co ordination and vision wont allow it Im trying to stay as positive as possible but its really difficult at times
I am so sorry to hear of your problems. It is so frustrating to not have a definite diagnosis and it has obviously affected you badly. I am not a medical person so can’t help with diagnosis but do understand what you are going through.
Please do try to help yourself with finances though. I don’t know if you rent or have a mortgage. Either way speak to the CAB who can offer you advice. If you rent you should speak to the DSS who may help with rent. If you have a mortgage contact the DWP and ask for a MI12 form as you may get mortgage interest help. Also speak to your mortgage provider who may switch you to interest only, defer some payments, capitalize any arrears etc. They will help where they can. Also speak to your utility companies, they will have a vulnerable person policy which may help you financially.
I hope you improve soon and can go back to work but until then please take care and speak to people who may be able to help you. Don’t suffer in silence.
Hi Jason, I don’t know if this is any help, but have you noticed the MS helpline number at the top of this page? You won’t get through to a medic, but you will be able to have a damn good chat about MS and all the stresses that come with it. The trouble with well meaning family and friends is that they don’t know anything about the condition, the tests we have, or the knock on effects that you’re experiencing. So why not try it? Talk to someone who will know what you’re going through and might have some useful advice.
Thank you all for your kind replies and help, its good to know there are others out there and i will consider giving the number a call as well, Its been a really tough few months and every day is a struggle but i do think putting my thoughts etc on here helped a little so im grateful for that and that there are people out there who will listen and understand so thank you all
Ill try to explain as briefly as poss so bear with me please…