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New to MS

I was recently diagnosed with MS and I have had really bad memory problems like I’ve talk to people and don’t remember talking to them at all is this just a part of having MS and my hands shake really bad is all this just a part of having MS?

Hello

Your memory problems could be part of MS. It sounds like the sort of cognitive issues I have, I talk to friends and immediately forget what was said. My husband asks what a friend said and I haven’t a clue.

It’s similar to the way I forget what I’ve read.

As for hands shaking, yes that could be MS too. It might be what’s usually known as a ‘tremor’.

Have you been told what variant of MS you have? There are three main types, relapsing remitting(RR), secondary progressive(SP) and primary progressive(PP). When you have SP, it is a continuation of the RR disease form. Eventually relapses stop and the disease becomes more progressive.

Have a look at https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis There is a lot of information about MS generally and the various types together with symptoms and drug treatments.

Sue

ms is strange and weird.

i myself was always a bit strange and weird but now i really AM very strange and weird.

i made my ms nurse laugh when i described a strange symptom and she asked how i knew it was ms.

i said that if “…if you couldn’t make it up, it’s ms…”

it’s a total b*mmer but it’s still life, which is for living.

sorry for coming out with such odd comments.

i’m feeling a bit strange and …what’s that other thing?.. yes weird!

i hope you manage to come to terms with it without too much upset.

this forum is a life saver.

there are some lovely and intelligent people here.

then there’s me who is strange and weird.

carole x

Carole is also lovely and intelligent. When she’s not being strange and weird. Or drunk.

Sue

Thanks you guys I really appreciate the feedback. I also have AS which is Ankylosing spondylitis is a long-lasting spinal condition in which the joints between the bones of the spine become inflamed. Over time, this causes the bones to fuse together, making your spine less flexible. Ankylosing spondylitis has no known cause but does run in families. It is much more common in men and usually starts between ages 20 and 40. People who have ankylosing spondylitis usually have pain and stiffness in the lower back that is worse at night and gets better with exercise. Complications can include eye inflammation, trouble breathing, heart problems, and spinal fractures. Treatment can relieve pain and stiffness and help prevent significant damage to your spine.

Hi Ssssue… I can’t remember if my Neurologist at Vanderbilt even told me. My memory is really bad and it’s gotten harder for me to get around. What really worries me the most is not being able to remember things and the shaking of my hands drives me almost insane. Also have ringing in my ears is that part of MS 2?

good grief COG70 do you have to exercise with an inflamed spine? are you receiving any treatment at the moment? wishing you some relief carole x

ps sssue

thank you for saying those nice things about me!

NP, part of the family. Xx

AK and MS? Blimey, you have a tough deal COG70.

So it must be difficult to differentiate between the 2 conditions with regard to a lot of physical symptoms.

I don’t know what the situation is in the US with regard to support. When you say the Vanderbilt, is that in Tennessee? Do you have access to MS nurses who can help you out? Do you get report letters from your neurologist appointments? Mayhem you’d be better off asking questions on the US MSS forum? They might be able to advise you better?

Sue

Hi Sue. AS & MS sucks really bad, but I’m now taking Rituxan infusions plus I go pain management every month to help with the pain! The US MS site doesn’t have the forms like the UK and I don’t know why but I wish they did. I would like to say that y’all have been great to talk with about MS. So thanks to all of you for all the help! Oh listen to this my memory has been so bad that I got a call from my pain clinic saying they called me for a pill count which I have no memory of and they told me that I told them that I wanted to self terminate which I would never ever do I’ve been going to pain management for 10 years because of my AS and when I got there for my appointment they told me all this and I tried to explain to them that my MS has caused me to have severe memory problems and the girl behind the counter and the nurses just kept being really rude to me and told me that I am no longer a patient and I kept asking for my doctor and they said she’s with another patient and you’re no longer a patient so you need to go there’s nothing else we can do for you!! They were so rude and hateful to me I couldn’t a place I’ve been going to for 6 years would treat me like that I just couldn’t believe it. I did get into another pain management clinic and they couldn’t believe what they done to me neither. My neurologist at Vanderbilt couldn’t believe also!! No one could!! Anyway thank you all so much for the help you have given me! UK rocks!! :slight_smile:

Hi Catwoman. Just like I was telling Sue AS & MS sucks really bad, but I’m now taking Rituxan infusions plus I go pain management every month to help with the pain! The US MS site doesn’t have the forms like the UK, I don’t know why but I wish they did. I would like to say that y’all have been great to talk with about MS. So thanks to all of you for all the help! Oh listen to this!! My memory has been so bad that I got a call from my pain clinic saying they called me in for a pill count which I have no memory of and they told me that I told them that I wanted to self terminate which I would never ever do in my right state of mind I’ve been going to pain management for 10 years because of my AS and when I got there for my appointment they told me all this that happened 2 weeks ago and I tried to explain to them that my MS has caused me to have severe memory problems and the girl behind the counter and the nurses just kept being really rude to me and told me that I am no longer a patient and I kept asking for my doctor and they said she’s with another patient and you’re no longer a patient so you need to go there’s nothing else we can do for you!! They were so rude and hateful to me I couldn’t a place I’ve been going to for 6 years would treat me like that I just couldn’t believe it. I did get into another pain management clinic and they couldn’t believe what they done to me neither. My neurologist at Vanderbilt couldn’t believe also!! No one could!!

COG

the way you have been treated at your clinic is appalling.

in the uk we have an organisation called PALS (patient advice and liaison service).

we can put in a complaint about shoddy treatment.

i’m beginning to really appreciate living in the uk!

always have but having ms makes it more so.

at least the second clinic and your neurologist agree that it was bad.

take care and good luck

Hi again Cog

You are quite welcome to any help and support we can give you. We are many of us strange and weird, but do our damnedest to help people with the same bloody disease we have. And the fact that you have AS too, just makes life even harder.

Feel free to keep coming on the U.K. forum. We’re not too fussy about national boundaries. After all, MS doesn’t give a stuff whether you’re a US or a UK citizen.

Can I suggest that you start keeping a diary, not just a calendar of appointments, but a diary that you can write in every day about your various symptoms. If you have a tablet type computer or a smartphone, you can get on in an ‘app’ form which makes life easier than handwriting. It might help to mitigate your memory problems. I’ve been keeping my diary (an app called Day One) for about 6 and a half years. It is a total lifeline now. I can refer back to when symptoms began, how long they lasted, what my various symptoms are feeling like, and it definitely helps with the memory deficits.

All the best.

Sue