Hi,i am new to this site and just would like some support really,i have just seen a neurologist and i was unable to complete any of the tests i could not touch my nose with my finger or walk in straight line with out falling over or when i shut my eyes legs together i nearly fell onto her! i had very little responce on my left side from the reflex test.I had my first eposode in my early 20’s when my right thumb went numb and i had heavy legs i saw a neuro then and had tests but they said due to my age etc it was more likely to be a trapped nerve and after 3mths i seemed to get better but i did suffer from fatigue on and off,5 years ago i had my 3rd son and following his birth was very ill after which i had sever fatigue,pains in my arms and legs strange sensations crawling or water running down my legs when their was nothing i was after loads of tests diognosed with Fibromyalgia and given pain killers and told nothing could be done really i would have to cope not easy when you care for 3 Autistic children which can be very stressful and exhausting,just before Christmas i was very anxious and depressed and was having hot shooting pains in my left heel also wobble legs and arm weakness so tired i was falling asleep with out knowing it the pain in arms and legs unbearable i went back to my gp and said how ill i felt telling all my symtoms also how my eye sight had deteriated following a optic nerve scan it showed i had swelling on the optic nerve,i had also had several falls and my balance had gone the last thing to happen was i lost the heel toe movement in my left foot and now can not walk to well so i waited 2mths to see a neuro and have now to have a mri and a lumber puncture.Sorry bit of a marathon post,i guess i think i have MS and to be honest i just want to know so i can adjust things to still be able to care for my children my youngest is only 5yrs so i have to be able to do this for alot more years.Thankyou for reading this and thoughts would be greatly recieved.
Hi Cags and welcome to the forum…
I’m sorry you have had to wait for a reply… think we’re all struggling in the hot weather and we seem a bit short of people.
It seems to me you have been coping with symptoms for so long!
I’m going to be completey honest with you darling because you have been struggling for so long and are juggling so many things in your life. I think it is very likely that you have MS.
I rarely say that to people waiting for a diagnosis as I’m not a health professional… just someone with MS… and there are literally hundreds of conditions that have symptoms similar to MS.
But your symptoms stand out to me as being classic MS symptoms. Bear in mind that I might be wrong!!! Also, even if the neuro also thinks it is MS, you need to have lesions showing on your brain and have a postive lumbar puncture to get the diagnosis. So, bearing all of that in mind, I think it very likely that you will get a diagnosis of MS.
I don’t understand why the neuro you saw in your 20s dismissed MS because of your age… Relapsing Remitting MS (the most common type of MS) very often starts in late teens or early 20s… so that didn’t really make sense.
It is of course still going to take a time to get your tests and get the results. I want to say to you to rest as much as you can… but quite honestly with 3 Autistic children I don’t know if that’s worth suggesting. Do you get any help at all hon?
When you have been struggling with symptoms for a long time, with no answers, a diagnosis can actually come as a relief… at least you know what’s going on… but more importantly you will be able to take DMD’s (Desease Modifying Drugs) that will help your symptoms.
Also you will be able to apply for some financial benefits that will really help you out.
MS is NOT a terminal illness. With the help of drugs, many people with MS can continue their lives fairly normally. OK there will be times when adaptions have to be made or plans changed, but for most people they can get on with work, relationships, holidays, parenting, etc etc just like anybody else.
Even when MS impacts our lives more, life is still worth living.
New treatments are coming along all the time and for the first time in history they are talking of a cure… so in a generation MS will seem like something that people used to get, like Polio is now.
Have you got anyone to talk to about all this? I really think it helps a lot to open up and have a good talk, cry, scream, laugh, whatever! If you haven’t got anyone, call the Helpline… number at bottom of page. You can just talk through your feelings about what’s going on. Better out than in!
Take care hon and come on here to ask any questions you have, or for support, or freindship. Usually you will get a reply much quicker… we seem to be running very slow on here right now!
Thinking of you and I really hope this helps,