ms diagnosis not confirmed yet but symptoms a lot worse

New diagnosis and before diagnosis
1

Hi, I am getting an MRI next Thursday which is great but I am a bit worried about all the stuff that is going on with me just now. I have pins and needles all over my body that feels like I am being stung constantly, so much so that I dreamt I was being attacked by a wasp early this morning. I am scratching at the 'stings’all the time. I need to go to the toilet much more than I used to, can be every twenty minutes at times, sometimes not making it on time. A couple of days ago I wet myself and I wasn’t even aware that I had until after it happened. I couldn’t even blame it on a UTI as I had that checked. Last Friday I had what I can only describe as an explosion in my face. Excruciating pain that lasted a couple of minutes or so but repeated itself four times in about an hour. Similar to the pain when eating ice cream and it goes to the nerves in your head but a lot more extreme and spread to my whole face. I saw the emergency doctor who said I described it well and most likely nerve related but he couldn’t prescribe anything other than co codamol as no formal diagnosis of ms yet. The pain is not constant so I felt that these would be of no use other than making me very drowsy. I even landed in hospital two weeks ago for a few days because I had chest and jaw pain which was thought of as unstable angina but tests came back fine. Now I know that it was more likely related to everything else that is going on with me.

It scares me that in just three months I have went from a bit of numbness, balance and speech issues to extreme pain and incontinence. I have cried a lot recently on my own but to my friends and family I put on a show of coping. Even my doctor thinks I am handling it extremely well but I am not so sure. I am worried that I won’t have the strength to be able to cope with this mentally and physically in the long term ie for the rest of my life.

2

Hi Daffodils

It sounds like you are really suffering, and scaring yourself silly in the process.

I’m glad you have an MRI soon, and hopefully this will give you the answers you need. And also hopefully the report on the MRI won’t be subject to a long delay as well.

Obviously, as you are aware, MS is a possibility. But don’t make your mind up for definite that you will be given that diagnosis. It’s still possible that you will be diagnosed with a different (probably neurological) disease/disorder. Or in fact that the doctors are unable to give you any diagnosis if the MRI doesn’t give them a clear picture of exactly what’s going wrong for you.

Possibly you’ll be given more tests, maybe a lumbar puncture (LP), or visual evoked potential (VEP), or some other test altogether before you can be given a definite diagnosis.

Regardless of the result of the MRI, once you’ve had it, even if you don’t have a definitive diagnosis, you should be given some medication to help with the symptoms you are experiencing. I would expect that a drug to help with nerve pain (pregabalin, gabapentin and/or amitriptyline perhaps). Also a drug to help with the urinary urge frequency (Betmiga or oxybutynin maybe, if you’re offered Oxybutinin, ask for patches rather than the oral drug, it’s better for side effects).

If the doctors do think it’s a demylinating problem (like MS), then you may be offered a course of high dose steroids, which might shorten the relapse, Although steroids aren’t a cure, often they help quite quickly to bring symptoms under control.

Depending on what results you have, if it is MS, then hopefully it would be relapsing remitting, in which case you’ll be offered a disease modifying drug (DMD). Again, DMDs are not a cure but they should help to reduce relapses and severity of relapses for someone with relapsing remitting MS.

I hope some of this will be of use to you. Come back to the forum with your worries and concerns. This is a frightening time for you and often it may help just to get a bit of sympathy / empathy from people who understand what you’re experiencing.

Sue

3

Hi Sue , thanks for the reply. I have seen a neurologist who said she thought it was brain inflammation which is affecting four areas. When I asked what she meant by that , she said ms. It was the neurologist who organised mri. I have had a ct scan to rule out tumours etc. You are right though there is always a possibility that it could be something else. I am scaring myself silly which likely won’t help with the symptoms I am getting. To top it all I have a drug phobia so knowing that I am going to have to take a variety of pills is not helping my anxiety. I will let you know how I get on next week. My gp said that she can access the results so I don’t have to.wait for my next neuro appointment so I am hoping by the end of September I should have some idea of what is going on in my brain.

Daffodils

4

Hi daffodils

we are all different and the course of our ms is unique. It would s possible that you need drugs, but it may only be until you settle down. I don’t know how old you are or how long you have had a problem. I have only been diagnosed for 5 months but have probably had it for 20 yrs. My relapses are relatively minor and every 8 yrs or so. As its a bit late for me to be hit hard by the drugs and I’m symptom free, I’m not taking anything. This is likely yo change in the future though.

5

I’m 54 . Neurologist thinks I have probably had it a while and in relapse phase just now. She said relapse/remission so iam hoping she is right. I know I have had different things going on the last 10 to 12 years but I put it down to age etc. I neverconsidered MS at all. My first major symptom that alerted me to something wrong was a problem with my speech and loss of movement in my right leg.

6

Hi hun.

I think once you have a diagnosis, you’ll probably feel less anxious and frightened. That doesn’t mean all your pain and problems will vanish, but hopefully once you’re on some effective medication, they will be a bit easier to manage.

I didn’t get a diagnosis for years, but I was given some very good meds way before then. These were amitriptyline for nerve pain, baclofen for spasms and stiffness, oxybutynin for bladder calming ( I have recently gone on to patches, which don’t cause the dry mouth).

Hang in there, keep talking to us and we’ll do our best to support you.

Pollx

7

I am sure you are right Poll, it’s the fear of the unknown. I will definitely keep in touch. Thanks for the support. Xx

8

Well my gp was able to get my MRI results and it showed no lesions so now it looks like a lumbur puncture is on the cards. I will now need to wait for my next appointment with the neurologist to discuss the results and probable lumbur puncture. The neurologist did mention it at my initial consultation but I was hoping it wouldn’t come to that. I am surprised given all my symptoms that it came back clear but I know that that isn’t unusual from the posts I have read from other members. Oh well, back to the waiting game again…

9

What a miserable time for you Daffodils. At least you know we are all here to support you and we have been through the mill too… Julia xx

10

It’s a strange old world when you’d almost be happier to have MS diagnosed because then you’d be able to start dealing with it. But, as we’ve all said before, it’s a case of waiting for the tests and figuring out what the hell is wrong. Did they do an MRI of your spine or just your head? And did they do one with contrast? That’s where they pull you out halfway through, inject some dye into a vein and put you back in to get more enhanced scans.

Do you know when your next appointment with the neurologist is likely to be? You could try phoning your hospital appointments team to ask them, or failing that, the neurologists secretary.

That’s going to be when you can start to get some more answers, ie if there are no brain lesions is it still possible for it to be MS? And if not MS, then what else could it be? Are they going to do an LP? And when?

More worrying and scary times for you Daffodils, try not to let it get you down.

Sue

11

Hi Sue, I got an unexpected phone call a couple of hours ago from my gp and she told me that my neurologist is arranging an MRI of my spine. No mention of contrast dye. I should hopefully get that in the next few weeks. My gp told me this morning that a lumbur puncture was very likely but that was before she heard from the neurologist later on today. As I type this I am getting the ‘stings’ on my hands and legs and the occasional sharp glass like pain, so yes if it isn’t MS then it has to be some sort of nerve damage.

12

Thanks Julia. I have had my moments but generally I am coping with it ok. The facial pain is the hardest to deal with, everything else I am starting to get used to (other than the constant tripping over invisible things)