This is my first time on the forum. I wonder if anyone is going through the same as me or anyone can help me with my feelings of fear and dread!
I am 46 and am going for my first appointment with a neurologist on Wednesday. I got referred by an orthopaedic surgeon as i had a MRI on my cervical spine to check if i had anything trapped in my neck (nerves) because my carpal tunnel release did not work. I have had a numb right hand on and off for the past 10 years. After the surgery my whole arm is sometimes numb and i get terrible neuropathic pain in my shoulder, neck, elbow and hand. Nerve conduction test was negative so he sent me for a mri.
The report on the mri was that i had demyelination at c1 c2 c3 and c4, hence the referral to neurology.
Whilst waiting for the results of the mri i started with waves of tingling in my right buttock and foot and the more i think about it over the years i have noticed symptoms that i didnt take any notice of just putting them down to running too much and over training, like foot drop occasionally and around 2 years ago i first noticed the Lhermittes sign. About 2 weeks ago i started going dizzy and i have to really concentrate when walking downstairs. I feel like i have a hangover and it feels like i have travel sickness too. my right leg sometimes becomes weak and i feel like i am staggering like im drunk!
I wonder if these symptoms are happening because of my constant worrying and anxiety?
Basically i am petrified but i will just have to wait and see what happens on Wednesday.
Sorry to go on and on. but is there anyone with similar symptoms?
If you have spent too much time with Dr Google looking up symptoms, then yes, some of them could be down to worry.
Now look at reality:
On Wednesday, you get a diagnosis (shall we say) of MS So what difference will this make?
First off, you know that you were not imagining things.
Now you know what the diagnosis is (probably RRMS, possibly PPMS, and could be “wait and see”).
Next, if you drive, you must notify the DVLA, and failure to notify your insurance company could mean that you are not insured.
On top of this, you should be put in contact with an MS Nurse.
You are now plugged into the record system as a potential candidate for DMDs (as soon as you qualify).
If you have life insurance - see if it includes critical illness cover.
If you work, there lots of people here who will advise you on how to approach your employer.
And, as for your mobility, it will be the same as it was last week.
All in all, a Dx of MS can be a lot better than not knowing. It does not mean the end of the world as you know it. Some people here have done some pretty good things after being diagnosed.
Obviously only a neuro can tell you for sure because there are other things that can cause spinal cord lesions and your symptoms, but I have to say that it does sound like MS to (unqualified!) me. But, even if it is MS, then it is something you’ve been living with for 10 years or more and that’s without any support - getting a diagnosis will allow you easier access to meds, therapy, aids, etc, and it won’t change your MS, after all, it doesn’t know it’s finally been found out and named
Sometimes the idea of MS / something being wrong can make us much more aware of our bodies and make us focus in on symptoms that we might previously have ignored or written off (as you have done in the past), but I doubt that your current symptoms are directly due to worry, although lots of MSers swear that stress can bring on relapses so it may well have been a trigger. Hopefully it will ease soon, but do rest lots to help it along. Btw, if the dizziness is a particular problem, it can sometimes respond to stemetil (your GP can prescribe it or you can ask the neuro when you see him/her) and neurophysiotherapy can help some people a lot (your GP can refer you).
There has been a load of change over the past 10-20 years in treating and caring for people with MS. New meds make the world of difference to most of us, there are more and more disease modifying drugs becoming available and there is finally a cure on the horizon. It’s not something that anyone in their right mind would ask for, but MS really is NOT the end of the world. The vast majority of us live long, happy and fulfilled lives and, although life isn’t as we expected (whose is?), it can honestly still be good.
Let us know how it goes on Wednesday? Best to take a list with you, summarising what’s been going on over the years (so you don’t forget anything) as well as any questions you have. Also best to take someone with you if you can: an extra pair of eyes and ears can help loads in making sure you tell the neuro everything and remember everything he/she says.
I’m waiting another mri and lp as I had lesions in the brain and am suffering many ms symptoms and reduced mobility. I’ve been told my my neuro neuro the mri is ms suspicious.
While im not much use in helping you with ms advice, I can at least say im in the same limbo land hoping ill be getting a seat on a ride to somewhere, soon. it’d be lovely if its not ms but after reading the support on here at least if it is i know im not alone on the unexpected journey. I think the hardest thing I find is the not knowing, therefore becoming slightly consumed by it. At least once we get a dx one way or other we can move on.
just to say you can pm me any time for a rant or chat. I’m bored at home due to spasticity so bad im struggling walk, so id love to chat.
Hi Ellen, I have a cervical spine lesion too and no dx yet! The neuro will probably want a brain scan done. If that is negative (as mine was) then he will probably ask for a Lumbar puncture. I was told that I would get an MS dx if either the brain scan or LP was positive. As neither were I am still in Limbo and due for another (the 3rd in 2 years) MRI next month. My only real problem is spasticity in right leg making knee bending when walking difficult.
I hope that you get an answer soon. Neurology is often a guessing game!
Thank you so much to everyone who has replied to me. I know it sounds silly but I don’t feel alone now and a little more at ease. Good luck to everyone. I will let you know what happens Wednesday. Ellen x
Hi everyone I have a diagnosis of MS. I saw my neurologist yesterday who confirmed my fears. I feel like a great weight has been lifted off my shoulders now I know. I also feel lucky as he told me because I have has symptoms for 10 years that it’s a mild form. I have to have a brain scan and have been prescribed Gabapentin for the tingling that is driving me crazy. So I wait for the brain scan and wait and see what treatment to go with. Thank you for listening. Ellen
I am sorry about your dx, but am glad that a weight has been lifted off you in finding out. You have a positive approach and you will do fine. You should be able to get appropriate meds soon to prevent relapses etc. Onwards and upwards as they say.
So take Care and lets us know how you get on.
Btw I am surprized they gave you a dx without doing a brain scan first. Did you have a lumbar puncture or any other tests?
I’m glad you had a productive appointment and can stop wondering about what’s going on. As the neuro said, you’ve had it for a long time already so it’s most likely a milder version and so hopefully not a lot will change from here on in. At least now you have access to specialist support if you need it. I hope the gabapentin helps. Don’t forget to let the DVLA know about your diagnosis (they typically put us on a three year renewable licence so they can monitor our ability to drive) and check any paperwork (eg your mortgage) for critical illness clauses - MS is normally a payable condition. You’ll need to tell your insurance company what the DVLA decide too although it won’t affect your premium. One thing: I know you feel a lot of relief at the moment, but getting a diagnosis can become a bit of an emotional roller coaster for most if not all of us so be kind to yourself and take it one day at a time. Karen x
Hi everyone thanks for all your advice and support. I haven’t had a lumbar puncture but I did give him a detailed description of signs and symptoms from when I can remember they first started. This was over 10 years ago. At the moment I feel positive and have been assured by my manager that I will not lose my job. This really worried me as I am an assistant physiotherapist doing a very hands on job. I have managed this well over the past 5 years and hope to do this for many more. Thanks again and good luck to everyone. Ellen xxx
From what you’ve written here, your history is classic RRMS. The neuro obviously thought that that, plus the spinal MRI, were conclusive and no other tests necessary. Seems very sensible to me!
As far as your job goes, anyone with a diagnosis of MS is automatically covered by the Equality Act. Part of this law is that employers must make reasonable adjustments to allow the person with MS to stay in work. So if, at some point, you think there is anything that would help you to stay working, e.g. different equipment, different parking, different hours, etc, you should speak to your boss and see what can be sorted out. Access to Work can often help with the cost of these things, if the employer needs it. Hopefully it will be many years until you need any such thing though, if at all.
Your story is so like mine…46 years old… Finally a diagnosis… The relief was immense. Don’t get me wrong, I don’t want to have MS but knowing i do has enabled me to move forward with a positive attitude (most of the time) the tiredness gets to me(anyone got any tips on this one?) Hopefully our symptoms will continue to remain mild for a long time to come. This forum is a great option !!! Annie
