Hi This is my first post and I’m hoping for some advice. First of all, I haven’t been diagnosed yet but after a recent episode of optical neuritis I’m waiting for a MRI scan. I saw a doctor in 2009 for leg numbness but had no other symptoms and nothing was really done except blood tests. About 2 weeks ago I started to lose vision in my right eye. The first doctor I saw was very dismissive and said I had swelling at the back of my eye, she didn’t seem to take any notice when I mentioned fatigue and trouble walking distances. I went back 4 days later as I lost almost all vision in my eye. I’m now waiting for a MRI scan. Things seem to be getting rapidly worse. My legs get so tight that I now have trouble walking for a few hundred yards and feel my balance is very poor. My right eyesight is still very bad but it’s not getting worse. It all sounds MS related to me and I’m worried about what lies ahead. Any advice is appreciated. My other concern is work related. If I was doing an average job I know I’d have trouble even getting in to work, I can’t drive or walk far now. The thing is that I work from home as a self employed web developer so even though it’s hard work looking at a screen all day I can continue working. I’m struggling to get enough money just to get by each month and get no financial help. Is there anything I should do? I have plenty of other concerns but I’ll leave it there for now, I don’t want to overwhelm anyone reading this! Any advice is appreciated, Many thanks
Hiya,
Unfortunately medically what will happen will happen; don’t get hooked up on the idea you have MS. There are lots of complaints it could be and MS is just one. Here is an article written by a doctor about his diagnosis; http://www.mult-sclerosis.org/diagnosingms.html
As you will see the procedure is far from a defiant science. It works on the Sherlock Holmes principle; ‘Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth;’ not a good way of diagnosing but is the best they have at present.
For your work I suggest you contact ‘Access to Work.’ I know it sounds strange as you problem is not access but there are many benefits they offer; computers; infrastructure; furniture; technology; well worth having a chat with them; https://www.gov.uk/access-to-work
You could be entitled to Disabled Living Allowance (DLA). Ring 0800 882200 Benefits Enquiry Line for the forms also have a chat and see if you are entitled to any other. Contact DIAL http://www.dialuk.info/ who will come around your house and help with the forms. Or Benefits and work http://www.benefitsandwork.co.uk/ who give excellent advice costs £19.40 per year. The DLS give excellent free advice http://www.dls.org.uk/advice/factsheet/factsheets_download.html it is essential you get help.
Hope this helps
George
Hi George has just about said it all re benefits and access to work.
On another plain, let me tell you my experience. I`ve been investigated for 14 yrs and PPMS was strongly suspected.
It has finally been ruled out and i have an inconclusive diagnosis…spastic paraplegia/cause unknown.
Yes, of course you will worry about what the future may hold for you and your`s.
The best bit of advice I can give is this
Whatever doesnt kill us, makes us stronger.
It`s true!
It may be pointless to tell you not to worry, when anyone says that to me, they may as well say Stop breathing!
Good luck with the scan and kep visiting us here, for support, eh?
luv Pollx
Hi, thanks for taking time to reply.
I’ll check out the links & info that you sent (I slept all day). I was already worried about money & work and now this rapid deterioration has just got me more worried. As I have no diagnosis yet, as many others have mentioned, I’m in a kind of limbo state, not knowing which way to turn.
I used to walk a lot but recently it’s been getting tougher, I feel like I’m just dragging along my left leg. Now just walking 100 yards is a problem. My MRI appointment should be soon, I’ll ask them lots of my questions.
Thanks for the help and kind words, I’ll be back once I know what’s going on as it may help others in my situation. Hopefully I’ll have some good news, whatever that could be. I’ll be checking back here regularly as it seems like a good place to get info and talk to people in a similar situation.
If anyone needs web hosting for a blog or website for the MS cause please let me know, I’ll happily give some time for free to help this cause.
Thanks,
Rob
Good morning Rob - you sound like a really kind man. Difficult time for you. You have already had excellent advice. My only additional bit is to dump the first stupid doctor you saw. Hoping you get sorted soon Hugs Min xx
Hello Rob x Can’t add anything to the advice you have already received - just wanted to say hi & hope things move forward for you soon xxjenxx
UPDATE:
I saw my gp again yesterday because of my mobility problems and he referred me to hospital for more tests. After waiting for 5 hours I finally saw a doctor, my BP, ECG and blood tests all seemed fine, they wanted me to stay overnight and have a MRI next am but I was too eager to get home so they allowed me to go home and to go back in the morning. Waiting around for 5 hours in A+E was not a nice experience. I thought a referral from the doctor wouldn’t mean I’d have to wait in A+E.
So, MRI later, I’d better try and sleep if I can.
The doctors were a little surprised when I mentioned MS, it was obvious that was in the back of their minds but it could be possible that it’s something spine related, I’m not sure if that can cause Optic Neuritis though, hopefully I’ll have something more conclusive soon. I’m writing this to hopefully help anybody in pre-diagnosis.
You’re all very kind here, I was wondering if MS only affects nice people? I see myself as one of the good guys with a good social conscience, but I am biased! My sister is a carer and has a few MS patients and she says they’re all nice too. Or maybe having MS is a humbling experience? I don’t know.
Anyway, I hope my journey may help anyone who finds themselves in the same situation, I’ll let you know how it goes.
Rob
I forgot to mention, when doing reflex tests and scraping across the sole of my left (weaker) foot my left leg would totally tense up for a few seconds, I had to concentrate to relax it. A very strange sensation!
Thank you to you all, I appreciate any feedback and my offer to help with web design/hosting for the cause is still open, even if you just want a blog to tell your story or maybe a charity site.
regards,
Rob
A spinal problem wouldn’t cause ON, but something that caused spinal problems could also cause ON. Unfortunately, nothing’s straightforward as there are a fair number of things that can cause both. Hopefully the MRI will get things moving towards some answers though.
I hate to disillusion you, but I know a fair few people with MS who aren’t very nice at all! 
I think you’re right about the experience affecting us though. It sure as hell makes us sort out our priorities in life, which is no bad thing.
I hope the MRI goes well.
Karen x
ANOTHER UPDATE:
I had my MRI scan yesterday. There was a bit of confusion of where I was meant to be in the hospital but when I was in the MRI unit they said a slot was available and as I was on the list already they decided to do it straight away even though I hadn’t seen the neurologist yet.
The MRI was a strange experience but they were all very nice and after the first run (head) I soon learnt to relax and just let them all get on with it. It all went smoothly. It really is a true wonder of science. It all went on for about 40 mins but they did my head (about 15 mins) & spine.
I’m now waiting to hear back from them with an appointment but at least the neurologists will be armed with everything they need. I just hope they didn’t find anything too strange inside of me!
I don’t know how long this will take but as usual I’ll keep you informed, I hope I’m not boring anyone! I just know that a week or so ago I’d have appreciated reading a story like this from the start so hopefully it will help anyone in the same situation.
I’ve gone from being someone who’s been quite healthy and have only seen my doctor once in the last 20 years to a hobbling, semi-blind in my right eye patient, it’s all happened so quickly but I guess I was lucky to get the MRI done so quickly.
My eyesight seems to be getting a bit better and vision seems better in the top half, hopefully that will continue.
… until next time …
regards,
Rob
Hello from me aswell
I look forward to your next installment,hopefully that will be to tell us everything MRI was fine and its just a vitamin deficiency.
If its not and you are put into the probable ms slot then dont forget we will all still be here.
Take care
Pip
Thanks pip, hopefully it is something simple like a vitamin deficiency but as far as I know lack of vitamin B is the main one that can cause problems but I feel confident that this won’t be a problem for me, how does vitamin D effect things? Because I know I don’t get enough sunlight, I worked nights for over 10 years and tend to be a night-owl so it may be a problem.
I’ll let you know how it goes.
Thanks,
Rob
Hi I’m new to this forum, I haven’t been diagnosed yet but have an neurologist appointment on 19 th, here’s my story… Last year had my own decorating and plastering business, August I had tingling down left arm and extremely heavy arms, put this down to my job, heavy legs soon followed to the extent I couldn’t work properly, I become extremely tired and general feeling of being unwell, had a couple if days of to rest, didn’t make much difference, heavy legs and slight tingle continued into sept, in August my right knee felt as though it was going to pop every time I walked and my toe went numb feet also extremely cold, was tested for circulation come back clear, a week after I had extremely painful pressure in my right thigh, felt like it was being pumped up from the inside, went to Drs and they suspected siatica, I then got booked into musclsketal for assessment, 6 weeks waiting list, in those six weeks i deteriated, I started to have a tremor in my hands and legs, lower back pain, dizzy spells, I could sleep for England, physically drained, liked someone pulled the plug and energy levels were zapped. My appointment came and I got assessed, possible herniated disc, unstable spine mri booked in for week before Christmas…mid December I become numb in saddle area, eye pain in my left eye when moving, and eye jitters, sent to a&e and have L5 area of spine scan with a cleAr result,…since then been to physio, and my lower spine isn’t flexing properly, my leg and back pain has increased and daily battles with tingling and painful pressure is now my normal experience, this week my arms have become heavy and tingling, and I had a problem with my right heel, couldn’t put it to the floor as it felt like needles going through my heel, lasted two days, my memory is bad, my words get mixed up, in a space of 8 months I went from a hectic self employed loving life to someone who is limited to about 10 mins of exertion a day without suffering. I’m truly hoping I haven’t got ms, but I gave had two Drs now say it a possibility, so everything rests on the 19th, how long did you have to wait for mri after seeing neurologist, and can anyone relate to anything I have mentioned…sorry it’s a long post, but it’s nice to get it out with people that may understand instead of being looked at as though I’m crazy…
kinds reguards Heidi x
Hello Everybody!
I’m new to the forum, and overseas in the USA. I have been experiencing eye pain, which is now gone, dropping stuff, breaking eggs when I pick them up, and tingling in both legs and feet throughout the entire 24 hr day, issues with hands at night, and numbness now on my inner legs and thighs up to the wedding tackle. Fortunately wth no incontinence issues…yet… I have three cousins all of whom have MS, and their mother, my aunt on my father’s side, died from ms when I was quite young. I have mentioned this tot he doctor, and he thinks I’m nuts. Heat kills me, cold soothes me even when it is uncomfortable, and that’s going some living in the northern US. The funny thing is that I lived in the southern states until ten years ago and never had an issue with hot temps, like 100+F or 35-40 deg C. Also, I’m in my middle 40’s. Any thoughts?
Hi Capitan schooner.
heat can sometimes cause something called Uhthoff’s phenomenon. This can bring about double vision that settles down when you cool off. In itself, it’s not indicative of MS but it can happen. I had it earlier this year but it’s now settled.
julia xx
Hi Captain Schooner
I’m unclear from your post whether you’ve been diagnosed with MS, or if you think it’s likely given your family history?
Obviously, if it’s the former, then the symptoms you describe could be MS, but equally could be indicative of something else. The neurologist clearly has to formally diagnose you.
If it’s the latter, then you don’t say what drugs you’ve been prescribed, ie DMDs or symptom relief.
Let us know, then we can answer your post more effectively. By the way, you may find that joining onto an old post isn’t as useful as starting a new thread. Just hit the New Thread button, give it a title and away you go.
Sue
Thank you for the advice. I’ve never posted anything on a chat room before. I have not had a formal diagnosis, and I’m quite leery of having one, as a diagnosis would cost me my job. The family history is why I would think the MS, and there aren’t any prescriptions as of yet.
Hi all
This is my first post. I have been having very strange symptoms for a few years…
Pins and needles in hands and feet
Dizzines/falling over
Restless legs
Extreme fatigue
Legs giving way
No feeling in left leg etc etc
I was referred to a neurologist. Have had a mri scan (2) one with contrast. Findings were dymylenation.
I am so confused. The whole thing is totally debilitating and has ruined my life to such a high level but the
Neurologist does not rush. I have the reports from both mri scans but it all seems to hard to read.
Any help will be grateful.
Julie x
Hi again
Having MS cost you your job is quite a scary thing. I can’t imagine what the job could possibly be that would mean you can’t do it with MS. If you do in fact have MS, you could find you have more physical trouble by not having a diagnosis than with one. Because with a diagnosis, you can get access to drugs, in particular disease modifying drugs (DMDs) which can stop further relapses and damage.
Obviously it’s your decision, and if in fact once you’ve been diagnosed you are a) required to notify your employer and b) such a diagnosis disclosure would definitely cost you your job, then you’d need to consider whether you’re prepared to sacrifice future physical well being for your job.
Sue
Hi Julie
So, you’ve had an MRI that shows demyelination, but your neurologist hasn’t actually come out and said what the scans mean.
You’re so right that having a copy of a report which seems like almost complete gobbligook is almost useless to you.
Have you been given an appointment date to discuss the MRI findings with the neurologist? If not, then try phoning his/her secretary and chase up an appointment.
I know that at the moment it all seems like your life is ruined, but once you get sorted with a definitive diagnosis, you’ll be ale to move forward with your life.
If it is in fact a diagnosis of MS, you should then be able to access a disease modifying drug (DMD) which should help to reduce future relapses and allow you to get on with the business of living your life.
Sue
(btw, you might do better to start a new thread rather than join on an old one - just hit the button that says ‘New Thread’, give it a title and then off you go.)