First post

Well it’s been a busy few months but have recently been diagnosed with MS. I feel really lucky, having read other posts to have been diagnosed so quickly, it does seem to be a bit of a postcode lottery! Well after a busy few months i have finally been diagosed with ms. I feel quite lucky, having read some of the posts to have been diagnosed so quickly. It sadly does seem to be a bit of a postcode lottery! I had had a few odd single symptoms over the past two years like numb tongue and needle sensation in top of head all put down to trapped nerves. This February It started again with numbness in my stomach spreading up and crushing round my rib cage. Again dr thought trapped nerve. In March things started to get worse when I could not co-ordinate my arm for writing and legs got wobbly. The dr this time referred me to a neuro as I failed the touch nose test poking myself in the eye! Lol by the end of the week I went back as I was missing not just my nose but my head! I was referred for an emergency appointment and had MRI within two weeks. Two weeks later sent appointment for spinal scan and three weeks after that saw my neuro for diagnosis. Who was fab. Luckily she had students in so explained what she was doing really well. However I forgot to ask lots of things (like you do) and didn’t know if anyone could help. I was told I could qualify for DMD’s but forgot to ask what happens next? How does that process start? I have also started gabapentin this week. I have been allocated an MS nurse but as it is all so new haven’t made contact with her yet, I understand she will contact me. However day five of gabapentin and my arms are itching on and off and not sure if this is normal when starting up? Not sure who to ask. Any help appreciated…thank you. I don’t know what the future holds but I am really positive.

I just wanted to say hi to you Mish.

I am not diagnosed yet, saw neuro for the first time last week, got VEP next week, then MRI of spine (MRI of head was ok), and then maybe lumbar puncture.

I am not on Gabapentin, but also itch like made from my scalp to my feet. Feels like I have insects crawling over me… not nice at all! I am on painkillers (cant remember the name of them) so wondered if this itching is a side effect of painkillers or is it to do with neurological problems?

There are so many people on this site who are just so knowledgeable and I am sure will be able to answer your questions.

Good luck Mish x

Hi Mish Glad you feel happy you were DX so quickly. My advice is get a note s pad and write your questions down as they pop in your head, they will. I had a quick dx and the problem was I forgot where I put it or didn’t have win me. I use my phone now. Take it easy and good luck Mike

Thank you for replying. Reading other posts I think itching is a symptom, as I had a burning itching sensation back in March. However my recent itching only started after starting meds. It is so frustrating not knowing for sure what is causes symptoms I do hope you get some answers soon. I have not had to go through having a LP. I had a number of areas of subcortical white matter lessons in addition to lesson on cervical cord at C2/C3 which is apparently causing my current problems such as unable to straighten arm and fingers or write properly, together with ‘the wobbles’ and ‘hug’, which are still ongoing since March. Hope all the testing helps you find an answer. Mish x

Hi Mike Thank you, that if a great idea I am so forgetful! I am seeing neuro again in October so I will start my list going! Mish

Hi Mish, and welcome

The itching could be a symptom or it could be a reaction to the gabapentin. Since you’ve only just started it, I might be tempted to reduce it and see if the itching improves if I were you. (Itching is a common side effect and can be a sign that someone is allergic to a med.) Best to contact your MS nurse and ask for advice - don’t wait to hear from her/him.

As far as DMDs go, it is the MS nurses who organise everything. Once you agree what you’re going to go on, they apply to the PCT for funding and then arrange prescriptions and all the logistics with the company who will be doing the deliveries. You then have to wait to see the injections nurse before you can get started. It can take 4-8 weeks to get approval so it’s best if you decide on a DMD asap so the nurse can get the ball rolling asap. The msdecisions website has loads of info about DMDs to help you choose. There is no “right” choice - just go with whatever one you think will suit you best.

Hth :slight_smile:

Karen x

Hi Karen

Thank you for your help.

Itching not too bad today but I will get in touch with MS nurse just to check. I will also look at the msdecision website to find out what it all involves. I think the introduction of meds makes it all seem a bit more real. However I tend to be a half glass full sort of person. My right hand and arm don’t always work to well but I’ve still got a left one which does : ) . I’ll worry about the future when it happens.

Thanks again

Mish x

Hellooooo Mish and welcome

Karen has pretty much covered your question about dmd’s - definitely check out the ms decisions website and make sure that whatever decision is made is yours!

Your nurse can open lots of doors in terms of meds, support and other services you may need so if she’s not contacted you then track her down and get that ball rolling.

I’m a half glass full kind of person too and I laugh as much as I can which helps to lighten the situation On the other hand when you’re having a bad day, go easy on yourself - don’t beat yourself up about it. Be good to you.

There’s lots of info available when you’re ready too. There’s a publications list on here which pretty much covers most subjects relating to ms - they can be downloaded, read online or ordered by post. The ms trust is another site worth perusing, as is the stayingsmart website.

It is possible to have too much too soon though so take your time, there’s no rush. As you said yourself, the introduction of meds and having a nurse assigned to you makes things seem all that more real. It did for me too! It might help to jot down the questions you have for when you see your nurse - maybe get yourself a little notebook. It works for me providing I remember to take it with me of course…LOL…

Debbie xx

Hi Debbie Thank you for all the useful tips. My sis in law thought it maybe ms before I was diagnosed so read a few bits already. She has a friend with ms and has fibromyalgia herself plus someone else in the imediate family has spinocerabella ataxia so she was quite up on neurological symptoms, so it wasn’t a complete shock, thankfully! I have always been quite forgetful so to have an excuse for missing birthdays is quite handy! Lol but yes must definitely get a note book. Thanks again to everyone for the welcome. Mish x