Undiagnosed, Pretty Sure I Have MS

Hey I’m new to all this, didn’t really know much of anything about MS until the start of this year.

I have crohns disease, bowel perforated when I was 18 ended up with a ileostomy bag until I was around 21 then I got it reversed.

At the end of last year around Autumn I noticed my thinking was becoming really foggy. Kept getting anxious for no real apparent reason. One day in September my whole left side went numb and I began hyperventilating ended up just taking painkillers and going to sleep, I was convinced I had a mini stroke. Everything seemed okay the next day so I just went about my daily routine.

Spoke to my gp about my symptoms he just kept recommending anti-depressants like fluoxetine never really took me serious thought I was just a nervous wreck I think. He told me my folic acid was low prescribed me some of those.

Around December or the beginning of January I walked into the wrong tenement block I’ve been living in since September took me a good minute to realise it wasn’t my close. I got two streets I know really well mixed up on one occasion. Out of the blue I was hit with one of the worst migraines I’ve ever experienced I was convinced I was dying, felt like going to hospital but I didn’t I just took two painkillers and went to sleep. I keep blanking on names that I know I know, like the cast of Breaking Bad, as silly as it sounds. People’s surnames.

I began to notice that for the past few months in low light my eye sight is horrendous. I had never noticed any issues before but there was definitely a deteriation. Go to my GP explain my symptoms he tells me my crohns specialist wrote to him in September telling him I should have been getting vitamin b12 shots but he didn’t see it because it was at the bottom of the letter???

After six b12 injections still don’t feel myself. I go back and my GP has pawned me off to a different doctor. I get prescribed diazepam don’t think they’re helping me much so I don’t continue taking them. End up in hospital due to migraine, pains in my head the hospital doctor is quite rude to me basically puts it all down to painkiller use for crohns. I get sent for a MRI as a outpatient. Puts me on amitriptyline which I took for about a month then weaned myself off last week just because I don’t think it helped any with the brainfog.

Convinced I’m just going crazy and the MRI will probably come back fine I just stay quiet put up with the general feeling of being unwell and not quite myself. I get the MRI and around a week later my whole left side goes numb again face feels like I’ve had a dental injection. Convinced it’s a ministroke I end up going to A + E.

At the hospital they tell me there were some white spots in my MRI unusual for somebody my age. I begin googling my symptoms and illnesses connected to B12 stumble upon all of the information for MS. Wound up asking the doctor point blank could this be MS? and he paused for a moment before saying we can’t rule it out but he has to refer me to a neurologist because they’re the experts on it and for all he knows the MRI is fine.

Had a flashback to being 16-17 and my crohns specialist at that time putting me on a medication called Methotrexate, after around the 7th injection I remember being told the medication may cause MS but not to worry because I’m young and it would be way in the future when I’m old. There’s a chance it wasn’t methotrexate but it was definitely one of the many crohns medications that was given to me.

Believe it or not I’m a writer, I’m sure it would be hard to tell after this garbled mess but I just need to get it out. I’m convinced when I’m out with people they can tell I’m a little bit slower, not as quick as I was. Keep falling into really deep daydreams for milliseconds at a time then convincing myself I twitched or made a weird noise. I keep reading words wrong and waking up seeing like black squiggles that are there until I get out of bed.

I’m just really really terrified and defeated at the moment and had to get this out. Thanks in advance to anybody who takes the time to read it.

Hi Jp,

You must get diagnosed; obvious I know; but against my ethos I suggest you go private for your initial consultation with a good Neurologist; cost about £300.

I must stress GOOD; it is no use jumping from the frying pan; ask on here any recommendations in your area, you can then book in as quick as next week all further tests; hospital treatment; drugs have on the NHS. This is legal, ruling made by the Law Lords about 5 years ago.

The symptom that most perturbs me is your migraine. Yes MS does cause headaches but they are far worse with a complaint called Hughes Syndrome (HS) ; see http://www.hughes-syndrome.org/ otherwise symptoms mimic MS.

Good luck

George

Hi,

I went to a private neuro who found lesions not seen by previous neuro both on brain and spine also atrophy of the spinal cord.

Id spent years going backwards and forwards ro GP and specialists and my self belief was on the decline, so i thought one last pust and get this sorted. The private neuro cost me £160.

Hope you get the answers you need

Christine

Thank you both so much! I really appreciate it.

I’ve just posted asking if anybody knows of a neurologist in or near the Glasgow area. This limbo phase of waiting is too hard, whether MS or Hughes Syndrome I’d like to get it diagnosed ASAP just so I have a better idea of what I’m dealing with.

I’ll come back as soon as I’ve got any news,

James

I have crohns too but different symptoms mainly pins and needles and retention iv never had that drug tho but the immune system attacks the bowel just like in ms where it attacks the nervous system be interesting how many people have both. Iv not been diognosed ms by the way

Yea I’d also like to find out how many people also have pernicious anaemia there seems to be a overlap there as well.

I still haven’t had any word from the NHS. Won’t have the money to go private until next week.

Can anything be prescribed for the brain fog?

I found a forum online with people discussing the exact type of headaches I’m experiencing but they had neurological lymes disease. It’s like dull graze or scraped flesh kind of pain then other times it’s as if somebody is tightening a elastic band around my left temple. It feels really unnatural and worrying.

My left side keeps going numb and I keep waking up seeing black squiggly lines it’s really worrying me. Will it be like this forever now?