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Newbie and Worried

Hi everyone I’m Debs (47) and new to the forum.

Saw my neurologist last week, he has confirmed that he’s fairly sure I’m in the early stages of MS. Been struggling with all kinds of horrible issues for more than a year now. My family are really supportive but I don’t tell them too much as I don’t want them to worry. Neurologist wants to start me on Plegridy fortnightly injections. Never been happy with the needle thing and having to do it myself terrifies me. I think my main issue is I’m constantly predicting my future as being the worst ever and can’t seem to think positive. Any suggestions that would help?

Thank you all for listening xx

Hello Deb

It is a scary time, there’s no way around that. But assuming it is MS (and your neuro seems fairly certain), then starting on a disease modifying drug (DMD) is a positive step.

In the early days of relapsing remitting (RR) MS, you are likely to be healthy and fit for years to come. And it may be that Plegridy works so well that you don’t have any relapses so you’ll be able to just live your life as normal, just with a fortnightly subcutaneous injection. (This means a tiny needle that just goes under the skin.)

Plegridy on average reduces relapses by 30%. This can mean that it works brilliantly and you’re one of the lucky people who has relapses reduced by way more than this. Or you could be unlucky and keep on having relapses. In which case you can switch to a more effective DMD. And there are lots of them available now.

Subcutaneous injections sound a bit scary, but they are much easier than you think. You just go for a fleshy part of you, your thigh, bottom, stomach for eg. Wherever you have a reasonable covering of fat. You’ll get an autoject device so you just point the thing at the skin and press a button. If you get bruised from the autoject, you can swap to just using the needle.

You may find that you have slight fluey type reactions from the drug. You deal with this proactively by taking paracetamol in advance of symptoms.

Have a look at https://www.mstrust.org.uk/a-z/plegridy-peginterferon-beta-1a The MS Trust website is an excellent place to look for information on drugs, symptoms, almost any aspect of MS.

I would expect that a person diagnosed today with RRMS will live without disability for many years.

I know that no one wants to join this club, but welcome to the forum anyway. Feel free to keep asking questions on the Newly Diagnosed forum, or on Everyday Living. There is usually someone who will at least try to help, or who has experienced what you are living through.

Sue

Thank you so much Sue, i am very grateful for the info and a very warm welcome. I don’t feel so alone now. Debs x

Hi Debs, I too am a new be so in no way an expert but luckily their seems to be loads of knowledge on here

Not diagnosed but my symptoms started i april this year - first with opticus neuritis, dizziness and tingling in my left shoulder. Later on I got needles and pain in my legs and numbess in left foot. The worst symptom right now is a horrible back pain an bladder issues.

Had an (brain scan) MRI and LP in June this year and all was clear. That means no diagnosis and no rest from work. I have all symptoms pointing to MS but doctors think Im to old for MS (54) I cant find a better explanation.

Going to have another MRI (spinal) this autumn and just wait. Hope it will end up well for you Debsh - with B12 defiency or another explanation.

Hi Deb, I think the waiting game is probably one of the most irritating aspects of diagnosis. Either you’re waiting months between MRI scans or months to see a consultant. Human nature conjures up a myriad of scenarios in the meantime. Given the options I went for the weekly Avonex injection to the thigh muscle. Mainly as I’m a bit rubbish at remembering to take tablets and it just meant adjusting life for one night a week. Over a year later and it’s pretty much an autopilot system of taking an injection pen out of the fridge (you may have to sacrifice a salad drawer to injector kits - great excuse to avoid buying salad) on a Thurdsay night and going through the motions of injecting. Attach a needle, press a button. They sent out a trainer who was quite a nice bloke and took me through the injecting process. Tended to feel rough until around lunchtime the following day and temperature went through the roof but that’s loads better now. As commented above, a paracetamol beforehand seems to help. Chin up, lots of things sound scarier than they actually are and you can only take each day as it comes.

Hi Jamesbex

Have a look at this thread - it’s all about age of diagnosis https://community.mssociety.org.uk/forums/new-diagnosis-and-diagnosis/ms-specialist-says-im-too-old-ms

Having said that you’re not too old for an MS diagnosis, having a clear LP isn’t unusual for an MS diagnosis, but a clear LP and clear MRI makes it quite unlikely.

There’s also been a mention this week on here of FND, see https://fndhope.org/ people are sometimes investigated for MS but end up being diagnosed with FND.

Also of course, as you’ve identified, B12 deficiency or Vitamin D even. Which as you’ve mentioned B12 I assume means you’ve had this tested.

I hope you do find out what’s been causing your symptoms. Obviously, you don’t want MS, but a solution to the question of what is wrong is sometimes worth having the diagnosis.

Sue

1 Like

[quote=“JamesBex”]

I have all symptoms pointing to MS but doctors think Im to old for MS (54). [/quote]

Rubbish!

I was 55 when diagnosed RRMS. That has now changed to PPMS. I still think they are wrong.

[quote=“Ssssue”]

Hi Jamesbex

Have a look at this thread - it’s all about age of diagnosis https://community.mssociety.org.uk/forums/new-diagnosis-and-diagnosis/ms-specialist-says-im-too-old-ms

Having said that you’re not too old for an MS diagnosis, having a clear LP isn’t unusual for an MS diagnosis, but a clear LP and clear MRI makes it quite unlikely.

There’s also been a mention this week on here of FND, see https://fndhope.org/ people are sometimes investigated for MS but end up being diagnosed with FND.

Also of course, as you’ve identified, B12 deficiency or Vitamin D even. Which as you’ve mentioned B12 I assume means you’ve had this tested.

I hope you do find out what’s been causing your symptoms. Obviously, you don’t want MS, but a solution to the question of what is wrong is sometimes worth having the diagnosis.

Sue

[/quote] Thankyou Ssssue you gave me some hope. But I still suspect PPMS - but if it is - its not the end of the world. At least I can be thankful that it didn’t hit me earlier. Wish there was a definitive test that tell us yes or no if its MS or something else. Being in limboland is torture.

[quote=“Scudger”]

If you think they are wrong - what do you suspect is the problem?

There are many conditions similar to MS. So I suspect it`s one of those. The reason I have my doubts is if I have PPMS why are my symptoms decreasing rather than progressing?