In limbo and feel like I'm going

I got an MRI on my head done in June which showed lesions, I saw my neurologist one month later he said it is possibly MS and epilepsy too and started me on tablets for the epilepsy. However I had another MRI on my neck two weeks ago and I’m awaiting the results. Next week I get a lumbar puncture and EEG done, however at the moment I’m in limbo and feel like I’m going mad. I have had numbness in my hip, knee and arm for three years now, last year I was told I was low in vitamin d and folic acid. I had a seizure in March and since then have never felt like me. I am dizzy all the time…even with tablets to stop it. My head feels heavy, foggy and I am constantly getting headaches. 8 can barely walk to the kitchen to make a cup of tea and have to use the work top to hold myself up. I have a constant eye tic, keep forgetting conversations but the new symptom I have had this week is I can’t hear two conversations at once. My in laws were over the other day the tv was on I was chatting to the mother in law and my hubby was talking to his father…my grandson was there and I couldn’t hear anything anyone was saying. It happened again this morning. Also my mood swings from high to low in a matter of seconds. in the last week I have had two good days where I felt sort of normal and my hubby noticed and said you’ve had a good day today…the thing is when I wake in the morning…always sore down my right side I don’t know if I’m going to have a good or bad day, it’s the uncertainty and the fact that I don’t feel in control of my physical body. Lastly…I’m getting very panicky when there are lots of people…seriously I do feel like I’m going mad…keep reading how everyone’s ms is different. However if I get an official diagnosis after all the tests at the moment my neuro says possible ms. Do other people have similar symptoms that I have.

Hi Fiona, sorry you’re having such a rough time, if your neuro thinks possible MS he’ll want to do a lot more tests to confirm.

You’re definately not going mad! Everyone’s symptoms vary but I can say that I feel just as you do when talking to more than one person,or if theres background noise. I have some of the symptoms you’ve mentioned.

Try not to get stressed, easy to say I know, but once all your tests are over, hopefully you’ll have a clearer idea of what you’re dealing with

Rosina x

Hi Fiona xx you are not going mad at all,just going through a hellish time with all kinds of doubts ,uncertainities, up, downs, positive thoughts and negative ones,all banging and crashing inside your head .

Until a week ago that had been my daily life for years.I was diagnosed and now I am coming to terms with a different type of normality.

You will,I promise you Fiona get through this .I have to hang onto furniture etc (the twirly chairs in lounge can be a challenge !! ) Once you know what you are up against things will become a lot easier for you.

The waiting is pure hell,in the end I asked for a private consultation ,it might be worth enquiring,but even so you would still need to have all your test results ,so praps that wouldn’t be of any benefit to you yet. 0 dear I just want to suggest something that would make it all better for you right now.

If a bucket full of hugs and hope would make it better , you would be better now. Take care Fiona xxx

Love and hugs Linda

Hi fiona, like you I’m also in limbo land, I get quite a few of the symptoms You mention, heavy head, dizziness, headaches & unable to keep track of Conversations esp when there is more than one on the go. I also have drunk Legs, foot drop (quite often trip over & cos of lack of co ordination hit my head Off pavements a lot), also have optic neuritis on & off, brain fog, leg & foot cramps, hip & Back pain. The waiting is a nightmare, have not yet been diagnosed, see neuro in Oct (if I haven’t cracked by then) been waiting since may for that appointment, Don’t often post on the forum, but reading it sort of helps to keep me sane. Thinking of you Keep us posted

Hi Fiona, I have constant dizziness too (my GP tried Betahistine with no luck, referred me to ENT who found nothing and concluded that it’s neurological). I have an initial diagnosis of FND - a ‘clear’ MRI effectively ruled out MS but I’m not convinced, especially after increased numbness and involuntary movements began a few months ago. I don’t get fall-down type of seizures, more like the morning stares where I just slip out of gear, go a bit vacant on the outside, but am aware of doing it. I’ve also been unable to understand conversations. Too much going on around me seems to short-circuit my brain! I’ve also had an episode where hubby and I were in our quiet kitchen. He said a whole sentence to me and I heard the sound coming out but none of it made any sense. I’m waiting to see a second neuro. So, you’re far from alone in this. However, things are moving along for you. While you’re waiting for clarification, be gentle with yourself. Find things that make you happy and slooow down. More {hugs} and best wishes coming your way :heart:

Thanks everyone It really helps to know I’m not going mad, I’m on betahistatine as well for the dizziness but it’s not helping xxxx