Hi. I’m new to this site. I don’t usually/never post on forums, but I feel a bit impotent at the moment and I could really use some advice.
To keep from boring everyone, I’ll try to keep it relatively brief: About 2 months ago I had speech and processing difficulties which lead to me getting stuffed into a noisy MRI machine, which in turn showed that I had 3 leisons on my brain. The doctors said that there was a very good chance that I had MS, but they needed to do a lumbar puncture to be certain. So they shoved a giant needle up my spine and told me to wait 4 weeks for the results. I left the hospital a bit dazed, but also a bit relived…I have been SO exhausted lately…but I have always chalked it up to my little girl…she’s almost 2 and doesn’t sleep much… Last year, I went through a period of being so tired I forgot my own name…I also remember not being able to follow simple conversations and felt a little bit like I was living underwater. After reading about MS, I’m convinced that this was an episode.
After my trip to the hospital my hands and arms started to get pins and needles in them. It made holding objects or typing an email near impossible. When I went to the Dr to get my results back, I was told that my blood work and lumbar puncture had come back positive. I told the Dr about forgetting my name and my limbs going tingly…he gave me a bunch of pamphlets about MS but said that he couldn’t officially diagnose me until I had another attack, he said he could only diagnose me with clinical isolation syndrome. He explained that the medication they would have to put me on cost the NHS £30,000 a year, so they needed to be 100 percent certain…I felt OK about that and left…I don’t like taking medication anyways.
The last week and a half I have been extremely tired again…the kind of tiredness where the world seems to have a glaze on it and holding simple conversations is really difficult. Yesterday, my left arm, leg, and bum cheek went pins and needley, my thumb and pointer finger were twitching, and my leg had a severe cramp…I already had a Dr appointment set for today which was aptly timed considering…so I explained to him everything that had happened yesterday and really stressed my fatigue (I find that the hardest of all) He told me the pins and needles were probably from BREATHING TOO HARD?! and for it to be MS related I would have to be completely numb…
I just feel like I’m at the point where I really need some support with my fatigue and want to talk to someone about the best way to manage it…I have a toddler, so taking things slow isn’t really an option for me…I can’t get any support without a positive diagnosis, and I really need help… Does anyone have ANY advice for me?
Thank you for taking the time to read and respond to me! I appreciate it.
When you went back to the doctor for the LP results, did you see a neurologist or your GP? You should be seeing the neuro. GP’s don’t know a whole lot about MS. So if you haven’t seen the neuro about the results, you really need to.
There are a couple of things I would like to tell you. Firstly your pins and needles are of course NOT caused by breathing too hard (utter nonsense!) and secondly that many people with MS have pins and needles without any numbness (I do).
And thirdly (haha more than a couple of things!) it’s absolutely not appropriate to tell you that they can’t give you a drug because it’s too expensive for the NHS!!! IF you have MS you should be offered drugs that can help your symptoms.
Let us know if it was a neuro who gave you the results…
Thanks hon. You’ve come to the right place on here. Lots of good advice and support. You’re among friends.
hi there mamamcbrigg welcome to the site I’m sorry I can’t offer u any out right advice about ur situation but I wanted to say hi n welcome I’m sure a more knowledgable being will be along fairly soon n will be able to help with ur concerns rest as much as poss, easier said than done with a toddler I know but try n be kind to urself Lou
Thank you both so much for the warm welcome! It’s nice to have the support. To answer your question Pat, I saw a neurologist both times. And to be honest, I appreciated the fankness of the first neuro regarding the expensive medication. I understand that it must be a complicated system and budgets are tight…I’m more concerened about the other support that becomes available once you’re diagnosed. I’ve heard that you can have someone come to your house and tell you how to make simple adjustments in it in order to conserve energy. Or just being able to talk to an MS nurse (I hear they are better than the drs to talk to) about possible triggers…
I just felt really brished aside by the dr saying my numbness, twiching, and leg cramps are from breathing too hard! I sort of feel like an MS nurse would take me more seriously…I don’t know why…
I do try to rest as much as possible…but it’s REALLY hard with a toddler…does anyone have some other tricks as well they can share?
Ok hon… yes sounds as if they want to see if they’ll be another attack.
For MS, brain lesions have to be separated in both space and time… in other words, different parts of the brain (space) and appeared at different times (time). So if and when you have another attack they will want to do another MRI to see if you fit that criteria (when they compare the two MRI’s).
Some people do only ever have the one attack… so fingers crossed, although your level of fatigue is worrying.
I could give you a bunch of tips but I’m an older woman living alone so my need for energy and yours are very different.
I think you should put a post on Everyday Living titled something like ‘coping with toddler and fatigue’. That way you’ll attract attention of other young mum’s.
My few top tips would be: rest when you can. Lower your standards… the housework police won’t arrest you… and eat regularly and healthily to keep your energy levels up.
HI and welcome from me too. I was only dx’d a few weeks ago, so don’t know much compared to lots of others on the site. But I do know there’s a drug for fatigue called modafinol (not sure if the spelling is right) . The consultant suggested it after my first ‘episode’ of pins and needles/loss of feeling in my feet and legs - he wrote to my GP saying this could be prescribed if she thought it was necessary. At the time we both agreed for me not to have it, BUT I haven’t got a toddler and was able to get some rest. It may be worth you asking the GP / consultant about this drug.
Pat’s given some good advice about resting/housework etc - there’s only one other thing that I’ve found to be a great help and confort - CHOCOLATE!
Hope you’re soon able to get some help and support.
Pat’s already given you some excellent advice, but I wanted to second her point about GPs: most of them know squat about neurology and it sounds like yours is no exception because your current symptoms sound EXACTLY like a relapse / attack. You need to see your neurologist.
Re fatigue: I really wish there were some simple answers, but I’m afraid no one’s been able to work out what causes it or how to help it to any great effect. The MSS and the MS Trust both do booklets about fatigue, so it’s worth downloading them to see if there are any tips that might help. A neuro may be willing to prescribe something for you to try. The two meds in use for MS fatigue are amantadine and modafinil. Unfortunately modafinil is very difficult to get these days and, even when prescribed, may not work - both modafinil and amantadine only work for some people, but you never know, you might be lucky.
I can second Pat with the pins and needles which despite meds I have all the time but without numbness.
Fatigue it is a very difficult part of an msers life. As Karen says there are booklets to read,but generally its a case of looking at your own life style and adapting it to factor in rests.
When people say its a life changing condition not life threatening this is one of the life changing aspects. People around you will also need to change because when your body says rest it means it.You may have to stop being supermum and get others to do more around the house. What headstone have you seen I wish I had done more housework on eh!
When the toddler is asleep do not charge round catching up on jobs,if you are feeling good do one and then make a cuppa and sit down. Is it possible to factor in some cuddle time where you and the littleun cuddle up with whatever is the current favourite dvd and you can rest but still be with him/her?
My GP was like yours in saying you will never get DMDs as they cripple the NHS. My neuro authorised them on my first visit to a neuro who could prescribe. No GP in my practice knows anything about MS, and they get round their ignorance and lack of professional interest in researching something one of their patients has by saying talk to your neuro or ms nurse.
You will find many threads on here that chocolate,cakes biscuits etc ARE medicine and should be taken at regular intervals.
my advice is don’t miss out on your little girl! as said already sod the housework just get loads of cuddles (best medicine in the world).
my sons were 19 and 20 when i was dx and due to my fatigue they have learned to do their own ironing - well one has, the other likes the trampy look!
you have a limited amount of energy so save as much as you can and spend it wisely.
i learned to say a rather rude phrase “f*ck it” when faced by demands of drudgery - i dont say it aloud though.
4 years into my ms journey i still make mistakes and i’m still learning (the hard way) but once you lower your expectations of yourself, you’ll begin to see light at the end of the tunnel.
christmas used to be my thing. i’d have 12 round for dinner and then the booze flowed copiously, but nowadays the thought of it makes me feel sick. where i used to have a 7 foot real tree, i now have a 2 foot artificial one (i called it my recession tree)
the cats are disgusted by it because they used to enjoy attacking the big tree!
now promise us that you will give yourself a break
give your little girl lots of cuddles and take care
Thank you everyone for your advice, sounds like I need to find a new neurologist in the New Year, one that takes my symptoms seriously. And in the mean time, I’ll use the holidays (and my husbands time off work) to rest.
I’m sure a more knowledgable being will be along fairly soon n will be able to help with ur concerns rest as much as poss, easier said than done with a toddler I know but try n be kind to urself