Symptoms getting worse

Hello all.

I’ve been having strange symptoms for several months now and I feel like my case is not being taken seriously by my doctor, so I’d appreciate any feedback you can give. It’s a long list, and I’m not sure if may indicate possible MS or not. These symptoms are draining me, and I’d appreciate some opinions and insights.

  • Feeling of pressure around the eyes and temples. Eyes red most of the time with raised IOP.

  • Feeling of pressure at the top of my skull.

  • Pain in the bottom back of my skull

  • Feeling of pressure around the eyes when bending or coughing strongly (no sinusitis)

  • Headaches

  • This is hard to describe: woke up one day feeling dazed or as if I’m half asleep. This feeling never went away since. 24/7. I feel like I’m not fully appreciating my surroundings. I am almost forgetting how I used to feel normally before.

  • Daily frequent twitches, mainly of the thumbs but also other areas of arms and legs. It even sometimes follows a pattern of 2-1-2. This didn’t use to happen before.

  • Feeling of things moving in the toes, like a small electrical current or like water flowing.

  • Had a full day of pain in one of my legs (in its entire length)

  • Pain under one sole when walking

  • Occasional sudden feeling of needle pinches when walking (mostly around the thighs and knees)

  • Occasional nausea, with one episode lasting 2 weeks.

  • General weakness in the body and muscles

  • Feeling unsteady, gets worse as the day goes by. By the end of the day, I need to be sitting or laying down.

I had an MRI with no contrast. Looking at the coronal T2 FLAIR, and going through the image sequence towards the back of the brain, I see 2 white patches / spots left and right, aligned. However the report does not mention them- could it have been missed?

I’m sorry for this long post. It’s just that I don’t know where to go to and what to do next. I’m completely physically drained by now.

I can’t really relate to most of your symptoms but MS is a very individual thing. However, if you feel your GP is not taking you seriously, you need to consider either seeing a different GP in the practice or changing practice. Have you been referred to a neuro? It definitely sounds like there is something going on and a neuro is probably the best specialist to investigate given the symptoms you describe. Keeping a symptom diary will help when you do see one.

Good luck.

Hi all Can someone please tell me if they must see lesions to diagnose MS. I had a period about 18 months ago when they thought this was indeed what I had! As no lesions was informed not MS, I do have Lupus SLE & Fibromyalgia but all these symptoms are out of sort for these conditions. 2 weeks ago I again had a bad fall when I lost all feeling in leg( paralysed) attended A&E broken bone in foot ! this has happened before and my GP now referred me back to Neurologist. I have the following Numbness in hands, arms, feet Double, blurred vision Loss of balance, now use 4 wheel walker Dysphagia Loss of speech , where I know what I want to say but can’t physically get it out. Mixing words up and slurring Constant extreme fatigue Fall asleep as if someone had flicked a switch, no prior warning of feeling I was going to do this, have had quite a few cups of tea over myself with this! As I’m back at go again I just wondered if I would be in limbo until lesions show up? Please can someone help Maxxi

Sorry, I have been away for a few days and hadn’t realised no-one had replied. As I understand it, MS basically is the lesions or demylination plaques in the nervous system, so if you haven’t got any lesions, you can’t have MS. I take it you have had an MRI and the statement that you have no lesions is based on the results?

The list of symptoms you list definitely indicate there is slmething wrong, but if your MRI is clear, that does argue it is not MS but I am not qualified to suggest what else it might be. My suggestion to the original poster applies to you: keep a symptom diary for when you see your neuro and in the mean time, hang in there. Diagnosis of neuro conditions isn’t easy because so many have overlapping symptoms and the neuro has to work out what is going on.

Good luck and keep us posted.

Maxxi - SLE can cause neurological issues, and can often mimic MS, have the docs looked into this? My understanding is that the cause is not lesions, but the vascukitis asoociated with lupus.

Leah :slight_smile:

Sorry river did not realise you were a different poster. My understanding is that it would be rare in the extreme for MS to cause symmetrical lesions, so I suspect they were structures in the brain or artifacts.

Sorry cant be of more help.

leah :slight_smile:

Hello I have recently been diagnosed with MS and wanted to go it alone without asking for help or advice by joining a forum but found that I am swimming in deep water and I could do with some help. The pain has finally got to me and I wanted to know if anyone has anything Similar as I know everyone’s Ms has a blueprint of their own. It’s my arms, they ache and I feel aches like it’s right to the bone some days (actually everyday this week) my legs feel fuzzy and weaker than normal at times too. Is this just part and parcel of Ms or could it be something I’m left with after my last relapse? Many thanks for any replies…

hi river

who ordered your MRI?

if it was a neurologist he/she ought to explain the results to you.

your gp could prescribe some neuropathic painkillers but your neuro can advise the gp.

carole x


see your gp and ask for some pain relief.

since you have a diagnosis, he/she will be able to liaise with your neuro to prescribe what you need.

neuropathic painkillers such as pregabalin and amitriptyline will help

carole x

Thanku Carole for the reply funnily enough that’s exactly what I am on. I’m on 375mg pregablin and 30mg anitrytptaline and I’m in the process of increasing the anitrytptaline up to 50mg. So hopefully it will get better.