ME and MS?

New diagnosis and before diagnosis
1

Hi everyone, Ive only just registered, like 2 minutes ago. Im 24, Ive had ME since I was 17 its been severe but the last year or two (touch wood) has been good. My partner and I have just moved in to a new house 3 weeks ago, until yesterday we didnt have a sofa, we were sitting on beanbags and I have a tub chair. The last couple of weeks I have been getting numbness and tingling in my hands, even when Im doing things with my hands, I think its been waking me up at night. Its been freaking me out and this morning I looked up MS and a lot of the smyptoms that indicate MS have been effecting me but some of those are normal for me with the ME. Ive put it down to the beanbags, Ive had backache which I sometimes get anyway but I put it down to the beanbags and I put the numbness and tingling down to that, maybe Id tweaked a nerve. I have nerve problems since the ME was diagnosed. In the last few weeks Ive been suffering with stiffness (not unknown but more than normal) Chest pains (I have asthma but midly and it doesnt normally bother me) balance problems (I have these all the times but it seems to be worse I have a joint condition which causes me to have bad balance normally but it seems to have been happenning more often, I fell over nothing a couple of days ago in a car park) the numbness and tingling in my hands, arms and fingers which is recent.

Im confused, because we’ve just moved Im with a new doctors, ive not even been to an appointment yet but I dont feel comfortable with the surgery so I want to change to another one in the area, there are still a lot of doctors who give you funny looks when you talk about ME so Im worried that if I go in and tell them about these new symptoms they will just write them down to the ME and ignore them.

Has anyone heard of people with ME and MS, Ive searched online and I cant see any information. ME pages have info about MS, MS pages have info about ME but nothing as to if you can have both or if it happens?

Im not panicking and im not diagnosing myself but I just want some infomation, anything that anyone thinks might help is welcome.

Louise

2

Hi Louise, a big welcome to the site .

Very difficult for you and frightening. I know quite a bit about ME because I was diagnosed with it at first (but just because mine turned out to be MS doesn’t mean yours will).

Firstly, as you know, there’s not a test for ME. You are diagnosed with ME through symptoms and the symptoms can be similar to MS. Fatigue of course is primary and occurs in ME and MS. Also aches and pains, tingling, buzzing, muscle spasms… all of these things can happen in both conditions.

For a diagnosis of MS they would normally start with an MRI brain scan to see if there are lesions (scars) showing on the brain. That’s what’s happened to me. My ME specialist sent for a brain scan and they found lesions. I then had to have some other tests and they monitored my progress over a year or so. I eventually got a diagnosis of MS.

On the subject of if you can have ME and MS I actually think that nobody knows… simply because there isn’t really a test for ME. So, like me, if you have been diagnosed with ME and then they find out you have MS, the ME diagnosis is dropped. All symptoms are then put down to MS.

I can understand how difficult it is to go to a new doctor with this problem, but I think it might be a good idea to see one. It is possible that the stress of the move (and although moving into a new home is exciting it IS also very stressful) have made your ME symptoms worse, along with sitting on beanbags etc.

But I think it might be worth getting the symptoms checked out anyway. Is there someone who can go to the doctor’s with you? Partner or mother maybe? Someone who can back you up and help explain what’s been going on.

Explain that some of your symptoms are new. Tell them that you fell over and that your balance is bad. Lots of doctors now are much more understanding about ME especially since NICE has said that it is a condition that should be taken seriously. There is much more information about it than there used to be.

Try not to worry about it too much… as I say it might really be that stress has sent your ME symptoms into overdrive.

One other thing, you could ask to be referred to an ME specialist. After all it was an ME specialist who sent me for the MRI scan. That would be one way forward for you.

So, go and see a GP with someone else and short list of your new symptoms. Come back and let us know what happens.

Lots of luck and hope you get some answers very soon,

Pat x

3

I can only echo what Pat said.

& I hope that you get some answers very soon.

I think many doctors quite happily put every symptom down to ME rather than investigating further, I would keep pressing your doctor for answers and hope you have more luck than I have.

Like you I’ve had ME since I was a teenager, just been diagnosed with Fibromyalgia and probable MS, but the neuro I’m seeing now doesn’t want to do further investigation into the MS diagnosis despite my neurological symptoms and family history of MS as he feels I’m coping with the symptoms and that the treatment for fibromyalgia and MS is the same.

Welcome to the forum and feel free to message me if you want a chat :slight_smile:

4

Tabitha, my Consultant said the same about Fibro, I’ve probably got it but the treatment is the same for ME and Fibro so there was no need to put me through more tests etc and I accepted that as ok because between the joint condition I have and the ME I had all the meds and treatment they would give for fibro.

Its only in the last day or two that ive put the pieces together and come up with a inkling if MS.

In reference to What Pat said, I have seen ME specialists and they never gave me an MRI, I have had one but on my knees to see if it was possible to operate on them but My Ehlers Danlos syndrome make surgery impossible.

My partner was with me when I fell and saw, he said it was like I tripped over air, I don’t really understand why I fell, one minute I was standing, next I was on my arse in the middle of a car park with my brother, his girlfriend and my dad laughing since i hadnt hurt myself, I didnt even feel myslef fall just when I landed which was very strange, my balance has been a lot worse than normal. I also get twitches. I have some nerve damage from the ME, I take an epilepsy drug and whether its the drug or my body I dont know but a few times a week I get violent twitches, parts of my body jerk wildly, normally may arms fly in the air and my neck jerks to one side but it can be anything. I can go days without one then one day I can have four or five.

Over the last week or so Ive had very stiff hands and fingers, the EDS (Ehlers-Danlos Syndrome) can cause sore and stiff hands in the winter but Ive never had it in the summer. I’ve has a similaer problem with my wrists they can get sore and they normally click, sometimes I bend or stretch my wrists to make them click which can give some relief but they wont click, the same with my ankles.

My Partner knows about the pins and needles and numbness, he rubs my hands when they go numb which helps, I dont know if he has noticed any changes other than me twitching more but with him at work during the day he may not have noticed anything else. Im going to try to discuss it with him tonight and call the other doctors surgery to see if I can switch to them and hope they have an understanding doctor tomorrow and try to push for a referral to a neuro.

Thank you for your help, its good to know Im not the only one who feels this way and has these problems.

Louise

5

Hello Louise, I can understand how you feel. I have had an ME diagnosis for years, although nothing official. 6 years ago I started having neurological symptoms with the last 3 years seeing a marked increase. A couple of months back I saw a Physio at a nearby CFS centre for an assessment and whilst it was a very nice meeting etc it didn’t help me or answer why my symptoms had turned like this after many years (23 after having glandular fever at 17). In between I came on here, got great advice, saw my GP again, stuck to the facts and my guns and got my Neuro referral. I have found this forum so helpful and reassuring and we all have to deal with hurdles from whoever or whatever (symptoms), so it is a safe place to share. I would definitely go back and fight for that referral. You know your body and if things aren’t feeling right, you have every right to get reassurance from a specialist. Good luck and keep us posted on how you get on. Sam xx

6

I talked to my partner about it last night and he was worried and a little freaked out but told me not to worry and we both said it could be a million other things. I have a practise booklet for the new GP and one has a particular interest in chronic disease management so I called them, a regualr appointment with him woudnt be with next wednesday but If I call tomorrow morning I can get an urgent appointment with him. Text Phil, my other half to let him know and he’s managed to get the day off work tomorrow to come with me.

Today hasnt been great. Last night I fell asleep on the sofa bed without taking my evening meds so felt like death when I woke up, or was woken up by the maintenence guy from our lettings agent knocking on the door, had to grab some clothes and let him in. I could hardly move, I feel a little better now but my back hurts. The bathroom light keeps tripping the fuse for the upstairs light so we have no lights upstairs, the guy this morning couldnt fix it so now I have an electrician coming this evening.

Its strange, the ME has been behaving quite well lately, we moved out 3 weeks ago last weekend we went back to our old flat to clean, I did quite a lot then the next day we went segwaying, a christmas present from my parents, and it was a lot of fun and I felt fine then yesterday it didnt feel like it was hard work or that it hurt when I was doing it and today Ive hardly been able to move, I was expecting some aching and my legs to be stiff bit not this. Its like my joints are frozen stiff and wont loosen out. I dont know if its self inflicted or if the ME is flaring or somethin else. Unless Ive hurt myself or done way too much then I wake up stiff and after an hour or two Ive loosened up, the last week or two and especially the last couple of days its like I need oiling or something, I feel creaky. Its taken way longer for the stiffness to melt away, or not at all.

One thing I noticed, it only came to mnd becase it just happened is i get these pains like lightning but not solid, its rhymic, like a heartbeat but not with my heartbeat. They come in my joints, in my ankles at the moment ans oddle along my jaw.

Im trying not to worry, I know it could be a lot of things but even if its nothing really serious these feelings of pain and tingling and numbness are horrible and they freak me out sometimes and can be very uncomfortable.

Im not feeling great so Im going to have a rest and maybe an hours sleep. Will let you know how it goes with the gp tomorrow.

Louise

7

I talked to my partner about it last night and he was worried and a little freaked out but told me not to worry and we both said it could be a million other things. I have a practise booklet for the new GP and one has a particular interest in chronic disease management so I called them, a regualr appointment with him woudnt be with next wednesday but If I call tomorrow morning I can get an urgent appointment with him. Text Phil, my other half to let him know and he’s managed to get the day off work tomorrow to come with me.

Today hasnt been great. Last night I fell asleep on the sofa bed without taking my evening meds so felt like death when I woke up, or was woken up by the maintenence guy from our lettings agent knocking on the door, had to grab some clothes and let him in. I could hardly move, I feel a little better now but my back hurts. The bathroom light keeps tripping the fuse for the upstairs light so we have no lights upstairs, the guy this morning couldnt fix it so now I have an electrician coming this evening.

Its strange, the ME has been behaving quite well lately, we moved out 3 weeks ago last weekend we went back to our old flat to clean, I did quite a lot then the next day we went segwaying, a christmas present from my parents, and it was a lot of fun and I felt fine then yesterday it didnt feel like it was hard work or that it hurt when I was doing it and today Ive hardly been able to move, I was expecting some aching and my legs to be stiff bit not this. Its like my joints are frozen stiff and wont loosen out. I dont know if its self inflicted or if the ME is flaring or somethin else. Unless Ive hurt myself or done way too much then I wake up stiff and after an hour or two Ive loosened up, the last week or two and especially the last couple of days its like I need oiling or something, I feel creaky. Its taken way longer for the stiffness to melt away, or not at all.

One thing I noticed, it only came to mnd becase it just happened is i get these pains like lightning but not solid, its rhymic, like a heartbeat but not with my heartbeat. They come in my joints, in my ankles at the moment ans oddle along my jaw.

Im trying not to worry, I know it could be a lot of things but even if its nothing really serious these feelings of pain and tingling and numbness are horrible and they freak me out sometimes and can be very uncomfortable.

Im not feeling great so Im going to have a rest and maybe an hours sleep. Will let you know how it goes with the gp tomorrow.

Louise