Hi everyone,
This isn’t something I normally do but I am trying to help myself. I was diagnosed with MS 3 weeks ago after I was diagnosed with acute optical neuritis in January. TBH I knew it was MS when I looked into the possible causes of ON because I had a number of symptoms & I was told that if it was MS I would be supported. 3 weeks ago I got the results from the MRI’s & was told the lesions were in my brain & not my spine. I still know nothing more. I have more tests next week where they will be passing electric signals through my body & I am hoping & guessing that I will then hopefully know more from there but all I am doing at the moment is guessing.
I have not heard anything from the MS clinic which I assumed would happen. I havent got a GP appointment till the 25th of this month.
I have tried to look at the info on MS Society & to be honest it is terrifying me as it talks about when you are not able to do things, adjustments that are needed, equipment to help you with doing things etc etc. I am not there yet, hopefully wont be but all of this is ‘if’ & nothing is tailored to me. I don’t know what type of MS I have, I dont know what my prognosis is, I dont know anything & I just want my answers to be tailored to me as a person as I am doing my head in.
I have had an incredibly hard 6 months (miscarriage, MS & not getting the job that I have been doing for 6 months on a permanent basis). I am off work at the moment as I am just exhausted & very emotional but I have a young family so don’t get much rest, I tried to go back to work today but just cried when I got there. I am not normally an emotional person & just feel weak right now & very vulnerable as my future seems very insecure now. I want support for me, I want the next stages to start happening so I can start to move on & start making my future happy & secure.
I don’t know what I really want from this post, maybe an idea of when I can expect to start getting support & treatment for me. An idea of what is next or I guess just contact from people who are in a similar situation…comfort in numbers!!
Thanks for listening x
HI LynneC35
it does feel as though you are on your own most of the time. I waited several months before I felt I was getting any recognition of my condition. Suddenly everything clicked into place. I must admit it was due to my own consistent efforts keeping on, always on the phone becoming a real pain in the backside. It had to be me making the first move as no one would bother otherwise. Now I have everything covered (I think) and I have the correct contact numbers for any help I might need. Now that the hard work is done and different departments do contact me on occasions. Which makes a nice change.
The bottom line is, don`t wait for people to contact you (it will never happen). You make the first move. Requires lots of research.
Then it becomes really hard work finding out what benefits your`e entitled to. Then you really are on your own. Use CAB for help.
Good luck.
Thank you Scudger, who did you contact to keep chasing things?
I am going to ring my docs on Monday to ask to be referred to the MS nurse for my area but I dont know if they will be able to do anything until I know more about my condition. I also have sorted counselling through work so I have 3 sessions coming up. I just thought, obviously naively, that once I was diagnosed I would be referred to the MS clinic & then I would be supported through this.
I doubt I am entitled to any benefits at the moment, I do have symptoms but nothing that affects my ability to move, function or care for myself. I am off work at the moment but that is more to do with feeling exhausted & coming to terms with things.
Thanks for replying x
hi lynne
you have an appointment next week so the wheels are turning.
what will be, will be.
hopefully these tests will help your neuro to get a clearer picture of what is happening.
try to relax with your babes.
carole x
Hi Lynne
Sorry to hear that you are having such a tough time. I cant offer much post diagnosis advice really as Im still going through the diagnostic mill and my neuro has gone on a summer holiday.
But I think the tests that u are refering to are evoked potential tests. They might include a Visual Evoked Potential one on account of the visual problems that u refered to. I had one of these two weeks ago and u just sit and look at a tele screen with a kind of chessboard pattern on it and they do each eye twice. No pain and was kind of relaxing. Though I have severe afterimages and so saw teh chessboard on the walls and door and might have seen it on the nurse if she hadnt been standing behind me.
I think you should have been provided with an MS nurse and consultant should tell u what kind of MS u have, whichmight be RRMS (the type that remits and is the most common type) and they should discuss disease modifying drugs with you. As I understand it, the current orthodoxy is that it is good to start these as soon as possible. Also, adn Im sure u will know this already, there is evidence that a high daily dose (300 what nots) of biotin can help slow MS progression, as perhaps can termeric and ceylon cinnimon, which are anti-inflamatories.
As to the future, some ppl have MS which progresses hardly at all and remits for years on end. Some people dont. But its quite possible that u wont ever need the adaptations referd to on the website and tbh have made me feel a bit panicky too.
Best wishes
Bob
Thank you everyone one, I know I need to be patient but its hard. I am normally a very strong person but at the moment I am feeling weak. I seem to be an emotional wreck at the moment & am so blooming tired. Every little thing that goes on in my body or has gone on I end up wondering if it is MS related. I just seem to be driving myself mad with it. I just want to move forward now & get a plan of action but I am waiting.
Hopefully after the tests things will speed up a bit.
Thanks for your message Bob. It is the Evoked Potential tests that I have, I am not worried about the actual tests but it is good to know that I will get an opportunity to just stare at a screen & chill out!!! Sorry to hear that your neurologist is on summer holidays, that must be massively frustrating!! its good to know that the info on the website panicked you too - I am not alone with this!!!
Hi Lynne, I can understand how you must be feeling. It is only 4 DAYS since my GP suggested I might have ms because of my symptoms and I feel a total wreck. I think of ms 24/7 and like you have become very tearful so unlike the happy go lucky person I normally am. I will be seeing my GP tomorrow to discuss the blood test results which are really only to rule out other illnesses. I am hoping he will then initiate a mri scan. My daughter keeps saying to look on the bright side which I normally do but ms is so different for each person. I do hope you get all the help you need asap. x
Hi Lynne…it`s only been 3 weeks since your diagnosis, so no wonder you feel all over the place.
A diagnosis which will be life changing is bound to knock you sideways mentally!
Now as for a prognosis…no-one can give you that…not even the best neuro could.
Now what you need to do is try not to panic. Usually nothing dramatic will happen overnight.
Reading every about every possible symptom doesnt mean you will get every one of them. Some folk with MS manage an very near normal life, so dont think youre doomed or in the worst possible situation...youre not. Dont write yourself off!
As common as MS is, no 2 people with it will have the same symptom.
And dont put everything down to MS either. Other things can be down to other illnesses.
The best advice I can offer is as follows;
pace your activities…give yourself rest days in between busier days
with a young family, accept all help given…no woman is an island!
if you`re not yet ready to return to work, then dont…no medals for bravery in this game chuck!
I`m very sorry about your miscarriage…that alone will have taken a toll on you, both physically and mentally.
Hopefully, your MS nurse will be along soon ad things will settle down.
luv POllsx
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An excellent replay from Boudica^
LynneC - you need to chill out. Sincerely. Just stop and take a breath.
Now listen… you have received some bad news. It will cause you to presume the worst. This will not be helpful to you.
First things first. Give yourself time to get used to this new reality. This reality comes with the same level of uncertainty in all things, that the ‘old reality’ had. Today things will happen to people that will change their lives immediately and forever. It is just part of the game called life. You are still no different.
Secondly, the internet is a wonderful thing; it can be an immediate source of all the info you need, plus a lot of irrelevant crap you certainly do not need; Go to any medically themed site and after a few minutes you will find you are a candidate for a whole range of different cancers!!!
Appreciate what it means when you hear that your prognosis is undetermined; it might be good, bad or completely indifferent (ie. no change). Indulge in some optimism; all the terrible things you have read, might still be the sort of things that only happen to OTHER people.
Finally, create a foundation to your optimism by way of proactivity. Get on a DMD, enhance your diet and behaviours, do not stress out, get more than enough rest and relaxation and realise that having MS is just the perfect excuse to treat yourself like royalty! Do not do anything that exhausts or stresses you. Easier said than done, but this is where your powers of adaptation will take over!
Good luck!
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Thank you so much everyone, it does help. I am.stillmoff worknamd tryimg to get used tonthings. Got my next hospital visit on Thursday and I have also booked myself in for some counselling as I don’t want to not help myself. I have done some thinking and realise that shift work is probably most the best thing for me as I get so tired looking after my toddler all day and then going to workmen the evening. I am going to use this time to take stock and change some things that have been niggling away at me so that I can stay as healthy and happy as possible. As soon as I think about work I feel like crying so that is top of my list!! Gulliver I hope you’re doing ok. It’s scary and my emotions keep going up and down so I’m guessing yours might be too. As I’m ahead in the process I’m happy for you to ask me about the next stages x
Thank you for your kind words. There has been so much for my brain to process I think its a bit worn out!! X