Help and Advice

New diagnosis and before diagnosis
1

Im 22 years old and looking for some advice. I have got to a point I dont know where to turn to and as MS has been mentioned I thought I would give this ago.

Anything anyone can tell me would be so greatful.

Im not saying I have MS but i just want some guidence.

At the start of september I have had numbness in my right foot and then it goes tingling and feels heavy, this has continued up to the point I have been given crutches.The feeling isnt always there but when it is its extremely sore and I cant sleep. I consulted my doctor several times and he tried me on many medication that did not help. Im worn out and scared and my foot now falls away from me and I have fallen, its starting to move to the other foot too. I know over the past 2 month am experiencing the same pains in my hands more the right hand but still worrying as cant feel them and any grip is gone which has caused me to drop things all over me. My foots getting worse in amense pain at night.

My vison also has changed over the past 6 months as now have to wear my glasses all the time, although I still struggle to read as I have dyselxia and when I watch tv or read vission is blurred and things move and and shake but that could be down to being so tired that I cant sleep. As a child I did have trouble reading and taking in information always very clumsy and had absolutely no coordination. This could also be down to my dyslexia as I have extremely bad coronation and memory to this day. lol

I have recently been in and out of hospital with this problem, but only to be told when they scanned me MRI that they found a cyst in my ovary and everything else was discarded.

So eventually after a fight I was given another MRI as I was having headaches so they scanned my head and my back. Again doctor told me my scan was clear and I was to go for Physico Therapy. After 1 session my therapist told me to get an emergency appointment as she could see my pain and unable to move my feet.

I changed my doctors at this point as I feel i was getting no where with my other one. So at my new Doctors I explained my symptoms and he did an assessment. My doctor mentioned MS and referred me to an orthopedic doctor whom didnt have the right information on his computer and quickly looked over my scan and told me I was fine and my scans were fine and to sleep on the other side of my body. Although he did mention MS as he said it was the first thing that came into his head.

I also would like you to know that MS is in my family. The orthapedic doctor told me to mention this to my other doctor.

Im really struggling as i know there is something not right. Im not healthy, Im scared.

Some days I can hardly move my foot and the hands/arm numb which is extremely concerning.

Any advice what to do would be appreciated as I cant go on like this anymore.

2

Hi Lucy, I’m fairly new to this forum and as of yet have not been diagnosed, but my advise would be to go back to your GP and ask for a referral to neurology given that your ortho consultant mentioned MS. At least then you should be offered the appropriate tests to either rule out or confirm MS. You mention that you had an MRI which was clear but there are other tests which a neurologist can carry out to determine if you have MS or not such as a lumbar puncture where a sample of cerebrospinal fluid is tested for antibodies. If there are antibodies found it can confirm a diagnosis of MS.

I see from what you have said that its really tough for you just now, but i’m afraid it seems diagnosis is a real waiting game.

I hope this info is of some use to you, there are others on this forum far more knowlegeabe than i am and hopefully they will be able to tell you more.

Big hug, Samm xx

3

Hi Lucy, and welcome to the site :slight_smile:

I’m rather confused that your GP(?) would mention MS and then refer you to an orthopaedic consultant - they have nothing to do with MS - you need to see a neurologist.

Although your MRI being clear will effectively rule out MS in almost all neurologist’s minds, it does not rule out other neurological conditions so you really do need to see a neurologist and get properly checked out.

It’s quite common for people with dyslexia to also have dyspraxia (problems with movement and coordination) and difficulties processing some information and/or poor aspects of memory so your clumsiness and memory issues could be normal for you, as you say. A lot of people with dyslexia have problems with part of their visual system and can experience things moving when others don’t, e.g. when they are reading, but it sounds like your problems are more than would be expected so you really should see an ophthalmologist to find out what’s going on. Your GP can refer you.

A neurologist will be interested in the fact that there is MS in your family, but genetics is only one of many factors in MS so while it increases your chances of having MS, it’s still much more likely that you don’t.

So, my advice would be to go back to your GP’s and ask for two referrals: to an ophthalmologist and to a neurologist.

Good luck!

Karen x