Hello Everyone.
I’ve been scanning your forum for months and on many occasions picked up the telephone to call the MS Help line, but felt I’d be just wasting there time, so I’ve not dialled the call. I have however found all your posts invaluable so Thank You.
Heres my story so far.
Since I was 13 I’ve had really achy hips, I was told then it was growing pains and to take pain killers until I was 18, if it were still painful to go back. The pain came and went throughout the season, being at its worse when it was really hot or really cold. I went back at 18 and they did xrays for arthritis, blood test etc again found nothing, again just told to take pain killers.
Oct/Nov 2015 I started to notice that I was forgetting little things, not completely but I’d really have to think about whether I had already done something or whether I still needed to do it. As you do I put it to the back of my mind…
Around February I was conducting a driving lesson and my vision went completely, OMG I was scared, luckily I was with a driver who had her test soon, so I was just about to explain to her to pull up in the safest place possible, then explain that I couldn’t see. Luckily as we pulled up my sight came back, blurry but at least I could see. Needless to say I didn’t say anything. I told my hubby when I got home, and he was like ‘oh’. This happened a few times during the night, I’d wake up and not be able to see a thing, and not just because it was dark lol. But by the time I’d navigated to the bathroom I had at least blurred vision again. Also at this time I was always tired, needing to take naps in between lessons.
I decided to visit the doc again, and he was brilliant, I think mainly because I actually burst into tears and said I was sick of being in pain, forgetting stuff and being tired all the time. He did loads of bloods and wanted me to do a memory test, as by this time I was getting lost, and forgetting how to get to family members houses who I had visited many times of course. He asked me to visit him the following week , and that I must make sure I see him, and as I leave to make sure I book a double appointment so he has time for the test. Funnily, I made the appointment but when I got home realised I’d forgotten to book the double appointment and mention it was for a memory test. The receptionist was very rude when I called back, asking how I could have forgotten in such a short space of time, my reply well I’m guessing that’s precisely why I’m having a memory test then isn’t it. GRRRRR
Anyway the week later I arrived at the doctors and my doctor was off sick. So I had to explain everything again to this lady doctor, and not doing so well with remembering as this time as I hadn’t taken my notes. Anyway she didn’t do the memory test as she believed I’d pass it with flying colours, and that she’d just refer me…I asked her who too and she said a Psychiatrist, well I was gob smacked. My mum has mental health problems and one thing I knew for sure was that I’m not mad, depressed or any of the things that you may need to see a psychiatrist. In the meantime I received a letter from the lady doc I’d seen and it said after speaking with her colleague she has cancelled the psychiatrist and referred me to a neurologist instead.
So if you guys aren’t bored yet this is where my neuro symptoms start to get worse. While waiting for my neuro appointment, I woke one morning and couldn’t get my balance when walking. I got to my daughters room and she asked if I was okay, I thought i was going to faint, she was brilliant she laid me on the bed and opened all the windows, then my face went all numb…I said My face, she was going to call an ambulance but I told her not to, I’ll be okay. I called the doctor instead and Dr said it sounded like vertigo and to rest, well since that day my left side of my body is numb including the left of my face.
In June My neuro diagnosed me with Migraine Aura, although I’ve never had a migraine in my life but said he would arrange an MRI too just in case. The neuro said I would receive an appointment for 6 weeks, 6 weeks came and still no appointment, 10 weeks still no sign, so I called the MRI department and they said I hadn’t been referred. Trying to speak to the neuros secretary was a night mare, she wouldn’t listen to the fact I was trying to explain that I hadn’t been referred. She kept saying, ‘’you need to speak with appointments’’ yes but they don’t know I need the appointment until you bloody refer me, grrrrr. In the end, I explained to the appointment lady how rude the secretary was being and she sorted it for me.
I had my MRI in early October 2016.
Result – Vascular Insult on Right Temporal Lobe. I do not know what this means.
I had a follow up appointment with neuro early December, he said its a scar, looks old,(maybe from when I was 13??who knows) so he’d like to do more test. Also my symptoms are getting worse I had to buy a walking stick on holiday as my legs just couldn’t cope with the hills etc.The extra tests included MRI with Contrast, done late December, Spinal MRI done last Sunday, Nerve conduction test, which they gave me the results there and then and they were normal. All bloods are negative, whatever they were testing me for. So other than an LP I fell I’ve had every possible test, I just keep hoping every day that I return from work that the letter has arrived to tell me what’s wrong.
The reason I write this post now, is to try and make me feel better. As I was going to originally wait for my diagnosis before posting, but I am truly feeling sorry for myself. Yesterday I went looking for Auto cars as driving my manual is becoming difficult with my left side. My hubby and daughter had walked ahead, so I was attempting to walk across a fuel station forecourt to get to them, and my legs literally weighed like lead, I could not put one foot in front of the other. I held onto a petrol pump trying my hardest not to cry, and there it was I just burst into tears, a blubbering mess. My husband came over and put his arms around me, he didn’t ask anything, other than did I want to go home. Does he still understand, I don’t Know…
So last night, my legs, hips and lower back burnt like hell and I am still struggling with walking. My hubby and Daughter have gone shopping, he did ask if I wanted to go but my reply is my legs will not cope. I’m 33 and feel about 90.
Do I have MS?? I don’t know, it could be anything, but boy I cannot wait to find out. I really wish my results will arrive soon.
If you have read this far, thank you. It has made me feel a little better just typing it out.
No replies necessary, just knowing someone who understands the pain and limboland we are in is listening, is enough.
Many Thanks
Cat