Memory loss??

[Ashley_x]

Are any of the side affects of cmt and hnpp memory loss?? If I've been given 3 tasks to do ill do at most 2/3 and forget the rest. I literally forget EVERYTHING but I could tell you what your granny's cats dogs goldfish was wearing 10 years ago. Have seen gp and physc and they have told me its either stress or "who I am" this all started at same time hnpp raised its head.... So I thought maybe one of you lovely souls would be able to answer my question .... Hope you are all well xxx

[UTTERJOY4]

Hi,

I can only speak for myself personally but I do have memory issues myself since my CMT escalated. It's been over a 2yr period but I had a great memory but slowly it has become more of an issue for me and very frustrating. I forget what I was about to say to people and have to put everything I can on a calendar now. I can't think of words which is more than just a problem others have as they get older. I have memory lapses of things that happen minutes before yet my long term memory is less affected. It's quite scary when I'm only just turned 40yrs old.

I haven't discussed this with my doctor yet in myself I feel it's the CMT as was fine before it progressed quite quickly and I cannot explain it well to my mum but I said it's like on my bad days it seems like it's in my head as I get weird sensations all day in my head and feel somewhat lightheaded also but its like ants crawling around in my head. Sounds weird or crazy I know but I have to deal with it and unless you have the condition it's not so easy to understand.

I'm sorry you're having memory problems too. I do not know if a medical person would agree it's a symptom of the condition but I definately feel like it is for me.

It would be good to know myself if others have this problem also and maybe not make me feel so alone in it.

Take care Ashley, I hope I helped a little.

Beth

[Ashley_x in reply to UTTERJOY4]

It does help Beth xx I turned 25 the other week and its not very nice I can tell someone half a story then I walk away as if nothing had happened I can't write things down because I forget where I have put things or I look at it and don't know what it means. I have neurology on the 22nd so hoping that I find out more xxx

[UTTERJOY4 in reply to Ashley_x]

It's made me feel like i'm going mad especially when others who don't understand, tell me that it's an age thing or it's normal as you get older but I try to explain that I know it's alot more than that and I tried to explain to my mum recently that I'm sure it's in my head and it's not something that can easily be xplained unless you have the symptom too. I have struggled for yrs to find out what was wrong with me and I only found out about 2yrs ago and have now the long wait for my daughter to be tested and shes nearly 18.

I completely understand about getting halfway through a story but with me I just go blank and it's quite scary really no matter what our age.My best suggestion for you is to get a family type calendar and write all the things you need to on that like I do and then you'll know where you wrote it down everytime if it's always in the same place. It's made my life easier and my calendar is invaluable and helps my daughter too who still lives at home.

I hope you get on well with the Neurologist and get some answers as it's so important.

I only recently found this forum and it's helped me feel less alone as it's not easy to explain things to others who do not understand because it doesnt seem to be a disease that many have even heard of. But knowing I'm not the only one who feels their memory is affected too has helped me so much so thank you for asking your question earlier.

Take care xxx

[gunner in reply to UTTERJOY4]

Hi, utterjoy4 I am only 45 nearly and I can sympathize with how you are feeling and what you are experiencing It is hard to explain to people but like yourself I too feel its the cmt as I have noticed it getting worse over the last 5 yrs. I have taken to putting things into my phone notes and google calendar to help me. But often put things into "safe places" then forget where that was. frustrating as I have lately lost a watch I love to wear and am 90% sure thats what I have done, but still can't find it. grrr! I go to think of a name or an answer then when I goto say it it goes from me and the more I try to remember it the further it seems to go from me. Then the next day totally out of context it shoots into my head> not much good by then tho a!

can I ask If you have known deep down that there was something wrong with you cos I have and when I was diagnosed it answered allot of questions for me. as I had bad feet when I was young, fell over often and was slow and had strength problems. as a child my parents did take me to be looked at but sadly they didn't recognise it as cmt back then and now it affects my entire body. I am a bit angry at the moment as my gp started me on a pain management course "medication" which you have to build up to, which i done but ran out and my gp went off for two weeks. what was the point of that ?? I don't think that was very professional and should have dealt with it before she went. so it will be 3.5weeks without meds. might complain ,should do be un british for once.

[Ashley_x in reply to gunner]

I use my diet as pain relief no caffeine or alcohol still working on the nicotine! Cutting bread out of my diet fair helped too as gluten can cause aggro of the nerves apparently?? I was previously on 150mg a day pre gabolin (lyrica) hope this Helps xxxx

[UTTERJOY4 in reply to gunner]

I was diagnosed 2yrs ago now and came to terms with the diagnosis quickly as I knew for long time something was wrong, I just needed a name for it.

The memory thing is definately a problem for me the sameas for you and Ashley.

I cannot find anywhere that says its connected with CMT but with further research, there may be a connection found in the future.

Is there a reason you couldn't see another doctor while yours was on holiday to continue your meds?

Yes I've known for alot of years that something was wrong and when I moved from London to Lincoln I finally found a fantastic doctor who listened to me and after sending me for diferent tests I finally had a name for my illness. All I needed was a name so I could look into it and face it head on.

Now I have the long wait for my children to be tested. My daughter is nearly 18 and waiting for the blood test but my son who is 21 wants to wait until hes finished university before getting tested.

It does help being able to talk to others who understand rather than look at you like you're a hyperchondriac. Being able to talk through new symptoms you have or questions that play on your mind etc.

I hope you get back on your meds soon as they can make a diference.

[gunner in reply to UTTERJOY4]

Hi utterjoy4 thanks for replying, yeah it is good to have people to speak to who have more chance of understanding what we go through.

I did make aptmnt to see another gp but forgot to go oops! but because of the medication i was given i didn't think the gp would give to me as not my usual gp. have to wait till monday now i went for a walk earlier and experienced discomfort/pain "that i don't feel usually" just av to put up with it till then. I also needed to talk and discuss about changing them as it was a little overwhelming causing brain stress. and other cmtrs have been prescribed the other of two different ones. it is to block the brain receptacles telling the body it has pain.

I don't know how badly you are effected by this "disease" it is important that you call it this as some call it a condition. but it is a "disease". can i ask if you have a shaking "phenomenon" in any way as i do and have had for as long as i can remember they call it a "tremor" as this can also be a symptom, but not for all. your welcome to chat or ask advice i will let you know what i know,anytime if it helps.I find it good to talk.

[Ashley_x in reply to gunner]

I can have a bad tremor sometimes it's awful people look at me as if I'm mad. Also have problems with fine motor skills picking up pennies etc always pay with notes now so I dot look "special" trying to count out change xx

[gunner in reply to Ashley_x]

HI ashley yeah its very frustrating so you have a big pennies bottle then haha. i drop things a lot and have the same trouble as you highlight. I used to get asked to get the coffee and tea's in where i used to work(office) and used to always start shaking and spill hot liquids on myself, until i told my manager and he stopped asking me phew! but i did notice when i used to work on tills asking people to sign for there goods an awful lot of people get nervous and shake when trying to sign there name. I take and have taken "propranolol" which is a beta blocker which does help but my shaking can become rather bad at time mostly when nervous or when i am being watched over. so my advice is if its a real problem try "propranolol" and also once you accept that its your disease causing it and that is the reason you shake, just tell people thats the reason and they accept that and it will not play on your mind so much, causing you hopefully not to shake, also try breathing control this also helps. I suffer with anxiety when i am in stressful situations so even with all these thing it still gets the best of me a lot of the time but if you don't have the same problem it may work for you. ps i'm a good listener always willing to chat ok.

[Ashley_x in reply to gunner]

My friend takes propranolol for her bpd she swears by it!! I shake when I get tired mostly. Very frustrating when you need to use large scissors at work... I cut myself twice today ! Not bad wee nicks. Still rips my kitting though!!xx

[UTTERJOY4 in reply to gunner]

Thank you. I have had tremors on and off when I get stressed or upset but put it down to panic attacks or something.

I would hope that your notes would explain to any dr you see that you need more meds and should issue them to you if he feels it's ok. I take gabapentin and also nortriptyline at night to help me get some sleep. The gabapentin i take the full dosage allowed and then the nortriptyline i take 3 or 4 at night depending on how i've been.

All my joints are afected and I seem to be more affected down my left side which isn't helpful as im left handed hehe.

I do sometimes feel like it's in my head too and it's impossible to describe accuratly the sensation. It's like im spaced out almost with ants crawling around and I get the ants crawling around sensation in my arms at times too and it's horrible.

Even with the meds I still feel alot of pain some days so when im on "a good day" I try to keep active and busy and I make cards to sell and latch hook rug kits which keep my hands going as I get lots of cramps in my hands which can be really painful but as im also hypermobile in my joints this just makes the joint problems with the CMT worse.

I know there are lots of people who have it more advanced than me so i see myself as lucky. My sister had to have both her little toes amputated by the time she was 17 as they were so painful and causing serious problems for her and she said it was the best decision she made as shes managed so much better with her feet since then.

I hope you get to sort out yours meds on monday as it's important to continue them when your building up to a desired dosage.

[gunner in reply to UTTERJOY4]

yeah i was just starting "gabapentin" had to take one for first 10 days then 1 morning and night after 10 days. then ran out and not had any since.I asked at my chemist and was advised due to side effects to try "pregabalin" ? which is not so harsh and you build it up slower so not so stressful.So i will put this to my gp when i see her next. but still feel she should have made provisions for me before she went away.grr lol. I drink indian tonic water by the way this is meant to be good for cramps cos its got "quinine" also we should be taking omega 3 and cod liver oil which i also take. oh and garlic amongst over things.and yeah there are people out there worse of than us i agree but we still have to live with our disease not there's. I am a sympathetic person as you sound like yourself but it doesn't take away what we have to deal with ourselves, it just helps knowing it could be worse mm!?

[UTTERJOY4 in reply to gunner]

I was diagnosed 2yrs ago now and came to terms with the diagnosis quickly as I knew for long time something was wrong, I just needed a name for it.

The memory thing is definately a problem for me the sameas for you and Ashley.

I cannot find anywhere that says its connected with CMT but with further research, there may be a connection found in the future.

Is there a reason you couldn't see another doctor while yours was on holiday to continue your meds?

Yes I've known for alot of years that something was wrong and when I moved from London to Lincoln I finally found a fantastic doctor who listened to me and after sending me for diferent tests I finally had a name for my illness. All I needed was a name so I could look into it and face it head on.

Now I have the long wait for my children to be tested. My daughter is nearly 18 and waiting for the blood test but my son who is 21 wants to wait until hes finished university before getting tested.

It does help being able to talk to others who understand rather than look at you like you're a hyperchondriac. Being able to talk through new symptoms you have or questions that play on your mind etc.

I hope you get back on your meds soon as they can make a diference.

[Whiterose]

Any memory loss needs to be discussed with your G.P or specialist. I have noticed some short term memory loss in myself recently, but much depends on how tired I am. Which may be connected to CMT too and linked to my age, as I am in my early 60's. Lets us know how you get on with your neurologist.

[Amanita]

Just an idea, Ashley...could your recent diagnosis be occupying your mind rather a lot, to the detriment of your memory? A cancer diagnosis some years ago certainly caused me to do some very absent-minded things (I'm fine now). I am no psychologist, but it seems plausible.

[Ashley_x in reply to Amanita]

It's been happening since before diagnosis after symptoms appeared ? It's a strange one I totally accept now my diagnosis still working away my 40 odd hours in a job and looking after my daughter partner and going to see my therapist in my spare time who happens to have 4 legs and a tail ! (He's my horse!) the memory stuff does worry me and I don't know if I have said I'm 25 just feel awful young. I left it 2 years to see gp about symptoms xxx

[gunner in reply to Ashley_x]

Hi ashley in reply to your q. I have found that i suffer with this also and feel it has to do with cmt, but i was also diagnosed with depression after a fairly serious head injury before my cmt diagnoses,but when i saw a specialist about cmt she also asked if i had depression as its a common side effect. which i told her i do or did as i thought i had got over it, but seems to have stayed with me as i have tried stopping meds but it seems to come back. anyway i was just wondering if you have this problem and if so this could maybe cause memory loss so maybe its the chronic depression that i suffer with causing the memory loss. maybe!?

[Ashley_x in reply to gunner]

I have suffered from depression since I was 13 (now25) and I also suffer from severe anxiety and OCD to name a few! I just feel as if its connected to the cmt as it started as the cmt symptoms started if that makes sense?? My consultant better have a strong coffee before my appointment or his head will be swimming all day !! Hahaha xxx

[Amanita]

I mean your recent CMT diagnosis.

[Amanita]

A CMT diagnosis can take quite a bit of getting used to and accepting, so well done there, Ashley. I hope your partner is supportive, and that you have good friends, and that the people you work for are understanding. Meanwhile I am sure that time spent with your equine therapist will be doing you lots of good,- and he/she will certainly be good at keeping everything confidential. I hope that the memory will improve, but am afraid its not something I really know anything useful about.

[CMTUnitedKindom Partner]

As I've said before, CMT does not affect the brain AT ALL, so it does not directly cause depression, memory loss, lack of intellect or anything else like that.

Whilst it may all appear to be connected, to rather dangerous to blame CMT for everything. Please check out the About CMT section on our website - cmt.org.uk - for the symptoms and causes of CMT.

Karen

[UTTERJOY4 in reply to CMTUnitedKindom]

If this is the case and I appreciate that nowhere have I found it written that memory loss is a possible symptom, why does it seem several of us appear to be having similar syptoms and the reason I feel that it is part of my CMT is because my memory was pretty good but as my CMT has progressed quite quickly over the last couple of yrs my memory has been affected and I have days where I feel like the CMT is in my head and it's something that isn't easy to explain. Maybe it's a coincidence but just maybe it isn't. Diseases progress and symptoms can increase surely and change so over time people may find they have new syptoms that were not discovered before.

I know i'm not a doctor but it seems strange that people seem to be suffering a similar symptom and have the same disease.

I would suggest that maybe it's the medicastion we take but we do not all take the same medication and some take none at all.

[CMTUnitedKindom Partner in reply to UTTERJOY4]

I can't answer this one - perhaps it's just purely coincidental because its quite common in the population.

However, it is strange, I'll grant you, and it's definitely worth me sending an email to Professor Mary Reilly to ask her the question!

Karen

[UTTERJOY4]

I think we would all appreciate that. Thank you and I hope my comments to you didn't come accross as rude as it wasn't intended. It's just very frustrating and some what scary when I'm only 40 and Ashley is only 25. We have all accepted our condition and are at different stages of our CMT and it seems the memory think could be connected with more people than is known about.