Newly-diagnosed (probably)

New diagnosis and before diagnosis
1

Hello everyone,

This is my first post on any sort of forum, so please bear with me.

After about 5 months of symptoms (mainly loss of fine control and strength in my right arm; difficulty in picking up my right foot properly and probably others that I’ve overlooked) I lost the ability to lift my left foot at all. Progress to a diagnosis via my GP during this period was very slow, but to cut a long story short, I saw a consultant neurologist and was admitted to hospital for tests. (Looking at other users’ stories, I think I’ve probably been lucky in the speed of my diagnosis).

I was discharged from hospital a week ago with a provisional diagnosis of MS, MRI having shown multiple lesions. Results awaited from bloods and lumbar puncture (LP). I have regained the use of my left leg, but my right leg is as it was. Right arm strength and control slightly improved. Visual stimulus tests suggested no previous attacks. I’m Male, age 49.

I return to the Neurological clinic in a few days’ time for the LP results and I’m looking for some help in getting the best out of the opportunity. Can anyone suggest what questions I ought to be asking?

I suppose the main ones concern whether or not MS is confirmed and, if so, what type? And from that whether any drug therapies are available?

I have no idea at all about what sort of ongoing help the NHS offers and what sort of questions I should ask about future care. Again, if anybody can suggest a short list of relevant questions, that would help me a lot. Any general advice gratefully received as well.

Finally, rest is important I know, but I cannot sleep due to a “new” syptom: intense, stabbing, itching in my heart and chest area at night; less intense during the day. From what I have read, this is a common symptom, but is it usually long-lasting? Also, who would prescribe drugs to control this? Would it be my GP or neurologist?

My apologies for all the questions, but I know that others with MS will, at one time, have experienced the situation that I face right now, so I hope you can help.

Thanks.

silverlining

2

Hello, and welcome to the site

I think the most important question is, “What is it?” and, although MS has been suggested, there are other options so it is definitely best to keep an open mind.

If it is early MS, one of the things that may complicate your diagnosis is that a patient has to have had more than one attack / relapse or at least a year of gradually worsening / progressive symptoms (this can be partially prospective) to be diagnosed. The fact that your left leg has improved suggests that you have had a relapse, but if your motor control and other symptoms have been worsening, then it’s also possible that you are having a mix of progression and relapse. If it’s progressive MS, then (in theory) your neuro could diagnose you immediately, although it’s fairly likely that they will see what happens over the next few months first. If it’s relapsing remitting MS (RRMS), your earliest symptoms were 5 months ago and your new symptom has started since your neuro appointment, then your neuro may be working under the assumption that you have only had the one attack in which case you may be told “probable MS” - which makes this new symptom very important from a diagnostic perspective. And which brings me to the next important question for the neuro: “Are you aware that I have developed new symptom(s)?” (Hopefully he/she will already have asked you this of course!)

If at that point (or before), the neuro tells you that you have RRMS or progressive relapsing MS, my next question would be, “What disease modifying treatment would you recommend?” There are a number of options, assuming you meet the eligibility criteria; the main bit being two “clinically significant” relapses within two years. The msdecisions website has a lot of good info if you would like to know more about DMDs (disease modifying drugs, as we call them on here). They are not a cure, but they can make a significant difference.

Thereafter, I would say the key things are to ask for contact details for an MS nurse (the first point of contact for everyday advice) and to ask for help with your symptoms. (Help includes meds, neurophysio and occupational therapy.)

Re getting help with your itching before your next appointment, then you have two options: ask your GP or phone the neuro’s secretary, ask them to ask the neuro for meds advice and then tell your GP what the neuro says. The second may be more convoluted, but it has the benefit of alerting the neuro that you have had a new attack and it bypasses the typical GP response of “I can’t prescribe anything until we know what’s wrong” / “You’ll have to wait until you see your neuro”.

Even with a diagnosis, then advice on meds normally has to come from an MS nurse or neuro before a GP will prescribe anything. Some GPs will prescribe without it, but it’s not the norm and PCTs frown on it. GPs can, however, refer to neurophysio, OT and other such services. How this is all coordinated varies around the country, but for the most part, it’s up to the patient to manage it all - basically, if you don’t ask, you don’t get :frowning:

I think that’s everything, but I’m sure others will add to this if I’ve missed anything :slight_smile:

For now, try and keep an open mind, be prepared for the next appointment with a list of questions and a list of symptoms you need help with, rest and try not to worry(!). Take someone with you to the appointment too - an extra pair of eyes and ears can be invaluable.

Good luck :slight_smile:

Karen x

3

Hello again,

many thanks to Karen for taking the time to give this practical advice. I will make sure I use it to prepare for my appointment. I’m keeping a journal of symptoms and intensity, which I hope will help as well.

I wasn’t aware that you could suffer from a mixture of progressive and relapsing MS - as if things weren’t complicated enough!

Thanks again.

silverlining (John).

4

Hi John, this is my first post too…I am newly diagnosed with very similar symptoms to yours. Mine started last nov, initially getting more severe quite quickly for several months and now getting worse very gradually but I also have relapses into bad (read: BAD!!) epsiodes for roughly 10 days every 2 months. Unfortuately my bad episodes leave me a shivering mess, barely able to move for a week!

Obviously we’re all different but I find Pregabalin so far works best for my itching/burning/stabbing pain. It’s commonly prescribed for nerve pain and your GP should prescribe it without consulting a consultant. I think Ammytriptiline(?) is most commonly used, but it doesn’t agree with me. Gabapentin’s common too but It didn’t perform as well as Pregabalin for me.

I’ve kept a diary from the start and it did turn out to be useful…In the end!

Definately good advice about taking someone to appointments with you…I don’t think there’s much someone else will be to tell the Neurologist that you or your diary can’t, but I always forget half he’s said by the time I get out the hospital so it’s good to have my wife or dad to remember for me

Good luck and Chin up dude, Matt

5

Hello Matt.

Thanks for your post and for sharing your experiences. (Sounds like you are having it really rough, I hope things get better for you).

I’m due at the neuro tomorrow and think I’m as prepared as I can be. My wife is coming alomg too. I’ll feed back on how it goes and what goes on - once I’ve got my head around it.

All best.

John.