Scared and worried

New diagnosis and before diagnosis
1

Hi, I am new here. My name is Jo and I am 40 years old. I’m not sure if I am barking up the right tree even but my symptroms have brought me here, very hesitantly, I must say.

I am struggling to type as I am seeing double in my right eye so am closing it for now, excuse any typo’s…

So, two weeks ago I stated to get a strange numbing feeling in my right ear and my ear was blocked. My ears block often and have to have them syringed.

I went to my zumba class as usual Friday night but the feeling stated to spread. It was like a pins and needles feeling in the side of my head, left side, going into my neck and left side of face. I went to bed and woke up Saturday morning completly numb all down my left side, head to toe. It felt really fuzzy, like severe pins and needles with numbness. My hand and foot on the left felt cold and I could barely feel them from the numb feeling. It was like it over the weekend and on Monday I went to my GP. He told me to go straight to AAU for a brain scan. So after 7 hours in the hospital I had bllod tests and a CT scan all weere clear so they said they didn’t think it aws anything serious. Thye got me to do a few physical test like touching my nose then Docs finger while moving it around and walking in a straight line etc. He asked me if I did any exercise. I told him I do three aerobics classes a week.

I also suffer migrrine and I have Tourette Syndrome.

He asked if I could havw twisted my neck when exercising. I said I twist my neck a lot due to the TS.

I askerd if it could be a trapped nerve but he said it would be more localised and not in entire left half of body.

I told him that there is Trigeminal Neuralgia in my family but he said that is usually localised to the side of face and head plus extreme pain , which I don’t have.

I was sent home and told the hospital would write to my GP for a referral to Neurology.

So after almost 2 weeks of my symptoms getting worse, and feeling so weak I could barely walk, I went back to my GP. Told him my symptoms are getting worse by the day: Tingling, numbess, pins and needles, weakness etc getting worse by the day.

I am now barely able to perform basic taks such as cooking and cleaning. He said he would make the neurology appointment an emergency one. This was Thursday. I have heard nothing yet.

I am barely able to get myelf in and out of the bath right now. Washing up exhausts me. My children are living out of tins and microwave meals. I hate this.

It is stressing me out that my kids are not eating properly. I am also a single parent with no family nearby.

I am terrified what’s wrong with me.

I am shuffling along like Ozzy Osbourne. My left legs keeps givnig way underneath me. I have no energy at all which isn’t like me. I am very fit and healthy.

I don’t drink or smoke and I eat healthy home-cooked foods.

I can’t go to the shops as I don’t have the energy so I am getting home deliveries.

I don’t feel safe crossing the roads because of the double vision. I can see OK close up but if i have to look ahead more than a couole of feet I get double vision so looking up the road for cars just sends me into a state of panic as I see cars everywhere.

My hand cannot grip properly so I keepo dropping things. Also my foot and hand feel freezing cold and ache. It also feel like my left foot and left hand are bandaged tightly with those stretchy tight support bandages. Also my rib cage feels tightly bound too. I keep waking up from nightmares about awful things that are wrong with me.

CT scan would have ruled out a stroke or brain tumour, right?

Apparently I am being referred for an MRI scan and a lumbar puncture.

No one seems bothered by my symptoms but it is worrying me silly.

I have been through an awful lot of stresss. Last June I split with my husband who has recently been diagnosed with BI Polar disorder. If anyone knows what that is then you will understand when I say he has been hell to live with at times. After being together for 14 years he has left me with some emotional scarring. When I finally decided we needed to separate for my own sanity he took it real bad and did some awful things. I am going through divorce now and things have calmed down with him since being medicated and finding someone else.

I also live far away from all my friends and family mainly due to my husband, and me feelling like we needed to get away from the things that were ruining our marriage back home.

Now we have split I am left alone and isolated. I don’t drive as I have ADHD and find it almost impossible to retain information or to be abre to remember sequences.

All I have is my health and now I feel that’s been taken away from me too I have nothing.

Do my symptoms sound like MS?

I don’t want it to be MS obviously but I need to be prepared in case it is.

I have a list of condiitons that can cause paresthesia and after going through them, MS is the one that sounds so similar to the symptoms I have.

The docs at the hospital mentioned migraine causing the numbness and pins & needles but I don’t feel that this is related. I have suffered migraine for about 27 years and I have never had this with it.

2

Hello and welcome

Your symptoms do sound very like MS, but there are actually a whole load of alternatives that could also be causing them, some of which (like vitamin deficiencies) are quite easily fixed or are one offs that never happen again. At least you know that whatever it is that’s causing this, the clear CT scan means it’s not a tumour or anything else life threatening. Unfortunately, an emergency neuro appointment doesn’t always mean a terribly quick neuro appointment :frowning: And even when you see the neuro, he/she may want more tests done. A big problem with neurology is that there are only a fixed number of possible symptoms, but loads of things that can cause them and not all of these can be confirmed with a simple test. That means that it can take quite a long time to find out what’s going on.

If it is MS or something similar, then your symptoms are likely to last at least a few weeks more or longer. You’ve already done the very sensible things of using on-line shopping and ready meals, now you have to start forgiving yourself for it! It will not harm your kids to eat ready meals for a while. It also won’t hurt to let dust lie around and clothes not be ironed, etc. The single most important thing you can do now is REST! Seriously. The body will repair itself better if it isn’t using up resources doing other stuff.

Couple of things…

If you are really struggling to look after yourself (and your kids), please ask your GP to help - he might be able to get you an urgent Occupational Heath visit.

To be diagnosed with MS, something like your current attack needs to happen more than once because some people have this type of thing happen to them and it never happen again! Fingers crossed that you’re one of them.

Hang in there!

Karen x

3

Hi Karen and thank you so much for your reply.

I am one of those pople who doesn’t ask for help and I expect so much of myself all of the time

I will rest as much as I can though. To be honest, I really can’t do much at the moment anyway as I feel so weak. I have never felt so weak in my life. I can barely lift my left leg to walk and it feels all floppy and limp. My hand feels like it is made of rubber. My kids are being great and doing the washing up for me, thankfully it isn’t much anyway as I said, we’re living off of ready meals and tinned food …and plenty of cupcakes :slight_smile:

I realy hope this isn’t MS but something else that never returns. I don’t know how I would cope if this was my life now. :frowning:

Feeling a bit emotional now after 2 weeks of this and no answers. I know, as with many diagnoses, that it takes time, it took me months to get a DX of TS for myself (that was pretty quick) and years to get a DX of ADHD with my son.

If this turns out not to be MS then, if nothing else, it has surely opened my eyes to the condition, of which I knew almost nothing about before this!

Thanks again

Jo

4

Hi All

Im am also new here. Ive been waiting to see a neuro specialist for 5 years now…and trying to save up to go private.

Any, I already suffer hemiplegic migraine and take mountains of pillls for other illnesses. Over the years, I have suffered alot of symptoms of Ms, but it may infact just be migraine or side effects of pills. such as Gabapentin and Targinact.

Ive come online today, to check out Numb and weakness on one side…so i found this thread interesting. Two months ago I suffered loss of feeling on my right side of body, then it went away after 24 hours, though I didnt recover totally until months later. A week ago, I started getting partial numbness on my other side of body (left). my leg especially sometimes forgets to move, which I have never had before. I waited till now, as I wondered if it was just lack of vitamins, like RIZZO suggested. I am bed ridden and have a very poor diet. So i started taking multi vitamiins again to see if it helps.

I dont really know when is the right time to get the GP round. I dont like to bother them either. Although I know I suffer hemiplegic migraine as its in the family and I have all the signs. But i havent been offically diagnosed by the neuro specialist, and havent cared about it because the waiting list is huge here in Wales. Im kind of waiting to collapse or something, so that I can get emergency help…its often a better way to be diagnosed, as the waiting takes forever!!

This time I feel different, because my grip is getting weaker and weaker as time goes by.

At what point should I be asking for help? I cant keep having tests everytime I feel numb or notice a change etc. Being chronically ill with a severe case of frozen pelvis, chronic back pain and scoliosis, I always like to wait and see what happens first…

5

hi Jo and Night Owl

buy a walking stick to keep you safe until you find out what is going on.

if nothing else it signals to others that you need space.

i really wish i had better advice to offer.

carole x

6

Hi everyone - I am so sorry to read all your stories and awful experiences you are having.

I would say do chase up your GP he/she is your lifeline and you are his /her responsibility - we have paid into the system all our lives and we should have prompt diagnosis.

I am recently 50/50 diagnosed - the neurologist is not sure tbh and my main concern is the feeling of immense neck and shoulder pain - i have some cervical radiculopathy (nerves trapped in neck) which I am getting an osteo to help me with however I cannot get any diagnosis for the incredible head pressure I am feeling and is getting worse over 18 months - one nostril blocked and one ear blocked no one seems to give me any answers; this sinus blockage somewhere is causing my eyes to ache and is absolutely debilitating day to day for so long - so we are all it seems looking for answers

I hope you all recover soon