Hi everyone. Whilst I know everyone’s symptoms are different, I was interested to hear of your symptoms in the leading upto your diagnosis. A bit about me… I suffer with hormone migrains and they are very much manageable. However 8 weeks ago I had a throbbing headache which lasted a day. The morning after I woke up with pins and needles in my left arm and then it went numb all the way down to my hand. The left side of my face also went tingly and then had a numb sensation. This lasted a few days and then would come and go intermittently. For the last 8 weeks I have had a headache, intermittent tingling, my balance and coordination is all to pot. I’ve had a couple of falls because of this. My left side is considerably weaker than my right and I find if I’m stood up I’m swaying/stumbling to the left. My eye can go quite blurry and I have pulsating tinnitus (although I’ve had this 3 years on and off now) I am a 32 year old otherwise healthy woman and I’m finding the day to day symptoms increasingly harder to live with. I was initially sent to hospital where they ran routine blood tests, ECG, and were pretty sure it wasn’t a stroke or TIA. I was asked to go back 4 days later for a symptom review and to see the neurologist who decided that an mri needed to be done. MS was one of the things he mentioned amongst other things. Fast forward 8 weeks and I’ve my mri and am currently awaiting the results (upto 2 weeks) Im really interested to hear your early symptoms before and the lead up to diagnosis. I’m half scared of what could be wrong but then even more scared they say there’s nothing wrong and I’m left to live in misery with these symptoms. Thank you for reading.
Hi Gemma and welcome, For me, it was my clumsiness, fatigue, and trouble walking (due to my feet feeling like planks of wood) which initially took me to the doctors. I’d had odd symptoms for years prior to that, but kept putting off going. It was my chiro who persuaded me to get things checked out, after he’d noticed other things which he felt were of a neurological nature and warranted an investigation. My GP referred me to a rheumy, but my symptoms worsened within a space of a couple of weeks, so I was referred to a neuro instead. After the initial appt, I had an MRI, copious amount of blood tests, EMG tests and an LP. It was 6 months from the initial neuro appt to the day I was formally diagnosed, so I was only in limbo for a relatively short period of time. My worst and most persistent problems are; pain, spasms & stiffness in my legs; myoclonoc jerks; cognitive / memory / speech issues; fatigue; I’ve had ON in the same eye 4 or 5 times which has left me with residual side effects and my balance is also shot to bits. Actually writing this down has made me realise just how many things have been affected…and I’ve not mentioned everything LOL. The thing is, most people won’t get every ms related symptom going and the symptoms they do get, won’t all happen together either. Some things may be more of a problem than others, but medications can help a lot too. It’s perfectly natural to feel scared; scared of finding out what it is and scared of the docs not getting to the bottom of it too. It’s very much a double edged sword whichever way you look at it - it’s real bum deal - you will get there though. I was scared witless, it was the not knowing which was doing my head in more than anything. Having that diagnosis definitely has its advantages, more doors will open in terms of treatments, meds amd support. Perhaps the way to look at it, is that you won’t be any worse off for knowing and there’ll be more support available to you. It doesn’t mean life will suddenly grind to a halt, in fact aside from having ms (which I wish I didn’t) I’m happier now than prior to being dx which I think is partly down to ms giving me the wake up call I needed. Hope that helps! Debbie xx
Hi Debbie. Thank you for your comments, they were really informative. My balance, headaches and fatigue is whats bothering me the most. I can live with the numbness and tingling. I’ve had horrible (what I assume conjunctivitis) in my right eye. Like my vision hasn’t been bad enough! I think the not knowing is the worst thing, I’m guessing these symptoms could be any number of things. I had my mri on Tuesday and was told I should have a letter within 2 weeks. I’m not sure whether that means ill have my results within 2 weeks or whether ill be able to make an appointment in 2 weeks. I have to say the neuro was great and reassured me he’d get to the bottom of whatever the problem is. Thanks again for sharing your experiences. X
Hi again Gemma, You could always try ringing your neuro’s secretary, see whether you can book an appt in advance, that way you’ll be able to discuss things with him face to face. Maybe he could prescribe some pain relief for your headaches in the meantime? It’s always worth asking. Debbie xx
Thanks Debbie. I had a call from the Neuro secratary on Monday. My results are in and have an appointment for Tuesday, which will be 2 weeks since I had the MRI done. I asked if she was able to give me any info over the phone but she said all results will be discussed on the day. In the meantime i went to my gp, who initially chased up the appointment, she was told to give me a 2 week sick note and told not to drive until further notice? She has given me some tablets to help with the vertigo type symptoms but its fair to say they havent made a bit of difference. Im in the mindset that no news is good news, My worse fear is nothing shows and they dont know why i have these utterly horrid symptoms, my headache is subsiding but my left arm is still very weak and my balance and stumbl,ing is really starting to get to me. Been extremely fatigued is not a great mix with 2 small children to look after.
Also its been 8 weeks since it all began, is this a long time for symptoms to be going on?
Hi, attacks can last months; so 8 weeks isn’t unusual for MS. The problems I had leading to my DX lasted 8 months by my reckoning (not verified my a medic).
Two weeks for the report on the MRI is pretty standard. The Radiologist has to make a report and a neurologist has to interpret that as an expert neurologist.
Advice on driving will be based on your symptoms; so no indication, really, of whether MS is diagnosed or not. MS is a condition notifiable to the DVLA because it is a chronic degenerative condition, Often only the default legal condions are imposed by the DVLA (ie a three year licence that is renewable). This as long as symptoms of your MS do not preclude driving. At present, it could be that the neurologist confirmed symptoms that did preclude driving; but they might be from any cause.
Here’s hoping that your symptoms are caused by something treatable.
Jon.
Thanks For the information Jon. I’ve just got from the optician to get my eyes checked. I have no peripheral vision in my right eye and limited in my left with very photosensitive eyes. I’m starting to feel as I have a few different symptoms that ms seems unlikely. Mainly because I’ve got numbness and tingling in my left arm/hand, headache, poor vision, my balance and coordination is way off. From my research it appears that so many things wouldnt be going on at the same time if it was ms? Thanks again for your reply. Gemma