Hi everyone I’m new to the site here. I’m Lyndsey. I’m 26 and in October 2011 I was diagnosed as having ME. My symptoms began to change and get worse and my GP then referred me to neurology. I had an MRI scan done in August 2012 and got the results in December 2012. The scan showed lesions of high signal intensity on the right hand side of my brain which corresponds to my symptoms on the left hand side. The main symptoms I have are tremor, numbness pins and needles, extreme fatigue (I could sleep 20 hours a day if I could) general malaise, all over pain, dry mouth and trouble going to the loo. Also foggy memory and poor concentration. There’s probably others but I cant think at the moment. Anyway my story continues in that my neurologist referred me for a lumbar puncture. Today I have gotten the date for the LP which is 5th June & I’m nervous about it. Any advice regarding it and the journey of diagnosis would be appreciated. Should also have said my paternal aunt has MS. My boyfriend is my chief carer. I have severe mobility problems.
Hi Lyndsey and welcome,
The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.
It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.
These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.
If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep; this is rare.
I only mention this as you say you have a dry mouth; could be Sjogrens Syndrome see http://www.sjogrens.org/ only a possibility.
Good luck.
George
Hi Lyndsey and welcome to the site 
The vast majority of people have no problem with the LP - it sounds very much worse than it is. They use thinner needles these days too so that the “headache from hell” is much less common. One of my friends had her LP, lay down for a short time afterwards (30 minutes or so) and then went to Tesco on the way home to do the week’s shopping! No side effects at all From the number of symptoms you’ve listed here, it sounds like this has been going on for quite a while (or maybe you’re in a relapse?) - it does rather beg the question if whoever diagnosed you with ME did a thorough investigation? But at least things are moving in the right direction now. Karen x
Hi Karen,
I feel like I’ve been like this forever but in reality its been a few years. The first symptoms I had were the pain in every muscle and bone and joint. Even my hair hurts at times if that’s possible. I also had the tiredness early on. I’m always tired but its not a normal type of tired. Going for a shower puts me back into bed. Getting dressed is the same. By the time I’ve managed both I’m barely conscious. My boyfriend Jimmy is my carer and he is brilliant. He helps me bathe and dress. He even does my hair and makes sure I get my medication on time. I have to pace everything. If I have an appointment (which is generally the only reason I get out these days) I have to stay in bed for days before to enable me to get out.
I also have three prolapsed discs in my back as a result of a car accident 8 years ago.
I think when I first started having symptoms my GP didnt know and because I’d had glandular fever as a teenager and that is common in ME patients ME was an easy diagnosis as such. In fact if Jimmy and I hadn’t pressed for a neuro consult I’d still be suffering with all these symptoms and no effective direction or treatment.
Lyndsey
Xx
Ah, showers 
If only it were trendy to smell! Kx
Agree with that one Karen They can be soooo tiring especially on hair wash days.
However, baths are even more exhausting (it’s the heat) and so are strip washes, I sometimes wish we lived a couple of centuries or so ago when it was acceptable to wash/bathe once a week, if that!
My shower was fixed on Thursday after a week of being broken and it was bliss even though I have to hold on to the wall when I close my eyes.
Tracey x
If jimmy didn’t bathe me I cudnt be clean. I just sit in the bath and he does everything in clouding my hair. Once I have climbed into the bath I’m wrecked lol I’m just out of hospital a couple of days ago. I had a blood clot in my lung and a secondary infection. I’m asthmatic but don’t normally have any trouble.
If jimmy didn’t bathe me I cudnt be clean. I just sit in the bath and he does everything in clouding my hair. Once I have climbed into the bath I’m wrecked lol I’m just out of hospital a couple of days ago. I had a blood clot in my lung and a secondary infection. I’m asthmatic but don’t normally have any trouble.
A blood clot is telling me that you need to be tested for Hughes Syndrome / Antiphospholipid Syndrome. It causes symptoms that are very similar to MS and can cause lesions on MRI. Please contact your GP tomorrow to ask for the blood test. Here’s a link to the Wikipedia page: Antiphospholipid syndrome - Wikipedia Kx
Thank you. Do you have any ideas or suggestions on what to discuss and what questions to ask when we go to see the neuro?
For second appointments, I would take a list of any new symptoms (for his info, eg the blood clot), symptoms that you need help with (so he can prescribe and/or refer you for help) and any questions you have. I think some of the obvious questions are: what were the results of the tests, where does that leave me in terms of diagnosis, what other tests need to be done to confirm this, what else could it possibly be (eg Hughes Syndrome)? If you are diagnosed, I would think these are sensible: what is the treatment, how quickly can I get started, what support is available (eg is there a specialist nurse) and, if there is a specialist nurse, what are his/her contact details? I’m sure there are others that you’ll think of nearer the time. Make sure to make and use a list - even with a list, I manage to forget one or two sometimes! Kx
Thanks! I’m always having to make a list. Even when I just have a GP appointment I still need to write down everything!