A Thread for Newcomers Worried about Multiple Sclerosis (MS)

[SmithsFan]

Ha ha! Would love to say my username was an oblique reference to the lyrics to Still Ill and their relevance to my health anxiety but I'm afraid to say that it never occurred to me.

I saw mention of those books earlier in the thread and intend to check them out as soon as I get through the other anxiety-related tomes I'm reading at the moment.

Years on from this thread first appearing how are you feeling now? Are you still having symptoms?

[CoraB]

Hi all,

I posted this on the symptoms page before i saw this thread and thought "thats the one for me" so am posting here. I've been having some really weird symptoms and I'm scared so much it is MS as two of my relatives have it. I keep trying to reassure myself that it is anxiety but I've had anxiety for years, sometimes worse than this and never has these symptoms

Has anyone else had the same? Lots of people talk about pins and needles etc but mine is like pulling pain, cramps etc.

- pains in my legs - on and off over past 6 months. On occassions it has been difficult to walk. Since a week ago pains in both legs, thighs, shins, claves and feet. Sometimes crampy, sometimes sharp or twitchy.

- neck aches and pains going up into the side of my face, more like a feeling my neck is weak and cannot hold my head up. sometimes the side of my face feels really cold/tingly.

- left arm and shoulder constantly achey and feel very heavy so much so it is an effort to hold a cup of tea. Other arm also mild achey. Typing like this makes all my arm and neck ache. On my forearm it even hurts to press where the pain is.

- feeling dizzy, like i can't think straight, like i can't think of certain words. I bit like swaying. Last week I felt like i was going to pass out. Also feel shaky like my legs are trembling.

I feel convinced my life is over and i keep thinking about what i would do if it was MS like i couldn't stay in my house as the stairs will become an issue and how would we pay the bills if I can't work and all the things i want to see and do but won't be able to. And how long will my husband stick by me when i can't do stuff and he has to look after me.

I feel like i am having a complete meltdown. Is it even possible all this is anxiety? I have a drs appointment tomorrow so obviously will talk to the dr but has anyone been through similar :-(

[itwillbefine]

Hi Cora,

So sorry that you have this. It sounds somewhat like what I have. Does it come and go, do you have good periods, do the symptoms replace one another?

Just being curious as to what you are going through, I don't have any answers, it's just nice to discuss the feelings and sensations that take up so much of our energy! I still don't know if I have a condition or not, I just know that the symptoms make me feel anxious.

---------- Post added at 15:44 ---------- Previous post was at 15:40 ----------

PS!!!

Know that treatment for MS (which I'm sure you don't have) is constantly and dramatically improving so that a normal life is the reality for people diagnosed today. We will not be in a wheel chair, and people do not die of MS.

[CoraB]

Hey itwillbefine,

Yeah i seem to have good and bad periods. Sometimes i think "its gone maybe it was just viral or something" but then its back.

Do you ever think you feel like your fingers are tingling? I'm never sure if its me being over sensitive. Also sometimes patches feel cold or just plain weird. I know it sounds strange but i also feel like i get pins and needles when normal people wouldn't like crossing my legs or sitting up in bed.

I have read a lot about MS and my dread above is getting the primary progressive type where you just slowly deteriorate. Just typing it out makes me feel anxious i have the start of it.

What sort of symptoms do you have? Are you having any tests?

[itwillbefine]

For me, it's been going for three months. started with numbness in one finger, moved on to tingling in arms, hands, then toes and feet. Numb patches on hands, face, not excactly cold. Then pins and needles and Sharp pains randomly. Waking up every night with fingers or toes fallen asleep. Arms heavy and sore, by that time my right side was most affected. My symptoms move from one part of my body to the next every other day

I was freaking out with anxiety. Then all of a sudden it stopped. I was relieved and happy. After 10 days' break, the numbness symptoms returned with stabbing and shooting pains, now only worse than before. At the same time I was coming down with a cold. All symptoms subsided completely or partly, if I was exercising and to some extent if I was socialising. But sometimes socialising also made it worse.

I don't think it's all anxiety and I'm waiting for nerve conduction test, but here's what my current positive theory is: anxiety magnifies symptoms and makes you extraordinarily sensitive. Also, anxiety drains your body of minerals! I found out that my iron levels are low, and low enough for my neurologist to put me on a high dose of iron. I am waiting for magnesium results. I've been taking iron for less than a week, and I am ok. Really ok. Still a little sore feet soles and some pains in my arms. Some days very heavy arms. Various nutritional deficiencies can be directly linked to anxiety and stress.

My GP is not worried about me. My neurologist does not seem too concerned either. They are not AT ALL preoccupied with MS or other serious conditions. And when I think about the conditions I've imagined the past 1½ years, none of my symptoms turned out to be anything. Why would they this time?

If I don't trust the doctors, I google to diagnose myself. I don't trust pilots either, so i dread flying. Maybe a pattern of control there.

The uncontrollable MS is really rare. And more importantly, it comes with much more aggressive symptoms, I am sure of that.

Sorry for the long story!

[CoraB]

Mine does go away, certain times I feel almost normal and then its back. Today its my neck hurting and arms are so heavy. Do you get chest tightness too?

I think what you're saying about the anxiety is spot on though it magnifies every little symptom and we're fixated on it which makes it worse. I know it sounds weird but if I am forced to put on my "i'm ok" mask I realise afterwards I wasn't aware of the pain.

I've been taking iron supplements, vit D and B vitamins daily as I did wonder about my iron - its been low before.

My worry about primary MS comes from that i have two relatives with it. I suppose statistically it would be incredibly unlucky for three generations of one family to have it as its not genetic? But then my mind says well i suppose its unlikely two generations but it happened..

[itwillbefine]

Ah, I understand it's difficult. Do your relatives have the primary progressive type?

Would it help to avail as much knowledge as possible - I mean talking to a real life doctor - about treatments?

I don't get the chest tightness. Sometimes I wish I did get something like that and not just these weird neurological symptoms. I get lots of muscle twitching allover though.

You're right about the "im ok" mask. I do that too...

[CoraB]

Yeah they both had the primary progressive type. I've looked for treatments etc and all they say is there is very little for that type doesn't respond well.

I keep feeling stupid as I think why I am having a complete breakdown at the thought of having it and those who have been unfortunate enough to have had it seem to be coping.

I've wondered about going on an MS forum and seeing if someone with it will actually talk to me but i'm worried it will make me worse? I already woke up with tingly hands, nerve pain and neck pain today. I feel so convinced there is something wrong :-(

Do you work? I haven't been in some weeks now and i need to get back. I simply cannot afford to stay off much longer but I dread work. I don't feel like I can concentrate on it and I am worried about having a meltdown at work or suddenly worsening symptoms or something.

[itwillbefine]

Oh my, you're not stupid, try not to think that. No one here thinks it, and people close to you cannot feel what you feel. Nerve pain - whatever the cause - is known to cause stress and anxiety.

Have you been diagnosed with anxiety and had treatment? I guess that would be the number one thing to do. No, don't go to an MS forum right away. If you do, it should be part of a recovery plan with your therapist. What you know frightens you, and what you don't know frightens you even more, and in your state of mind it's a delicate balance. Somewhere in the recovery process, I would assume it could be useful to get clear information on prevalence, genetic risk, treatment - in order for you to look at it realistically. Not from any internet site (please!), but from a professional.

You know, Airlines provide training for people with fear of flying, and pilots take the fearful passengers through all the functions of the plane to make them understand why the likelihood of a crash is less than than dying from a bee sting. Therapists add with cognitive training. That's what I picture could be useful with your MS fear.

Yeah, I work. For me, it's better than staying at home. Last time, my symptoms were bad, I stayed home though, because driving and typing made my arms worse. Instead I took hourlong walks. I have talked to a few colleagues who are really understanding, and it helped me tremendously to let someone know that I'm not feeling well. They also know why my energy and Work results are not 100% (rather 30%), so I don't feel guilty.



After a good period of a week or so, I feel the nerve symptoms are picking up again, so this I'm preparing myself for another round.

Btw, this article (Itoldyouiwasill gave the link) is a good one. It says that 1/4 of patients in their neurology Clinic have nerve symptoms that are not related to any disease, rather stressrelated:

http://www.sth.nhs.uk/neurosciences/...ical-disorders

You know the chances of you being fine are so much higher than of you having MS.

I too know someone with ALS. They are indeed coping, and I hear from wise people that we humans have so many more resources than we thought we would in times of crisis.

[Movielife]

Been here, worried, worried some more, still worried.


I've had some very minor (I have to admit, they are minor) tingles, no pain, some aches, but I've had minor dizziness on and off for 2-3 years.


Seen ENT, seen GP a LOT, had an MRI (ENT looking for any issues in the inner ear - had no concerns) MRI came back clear.


Two weeks later, still worried.


Why? Because I googled MRI scans, when I was off meds, after my MRI clear result!


I went into a 12 hour meltdown. Spoke to GP, stated yet again, I have very high anxiety and that they thought the scan would make me happier. It hasn't...much.


Anyway, now my Health Anxiety has calmed a little, but it's moving to other anxieties, about being anxious, about happiness, etc.


I've had this severe anxiety for 4-5 months. I've asked countless people over the years 'do I have a tumour/MS/something sinister', they all said no.


GP is surprised I am thinking I have something serious, and I can see why. I am pretty much physically well, apart from the odd ache, colds staying longer than usual as I'm run down, and extremely minor tingling which I think I'm partly imagining and goes as soon as I don't think about it. No weakness, no pain, no proper numbness unless I physically sleep on my hands (which I tend to do and have done for life).


If I do get that pins and needles feelings, its always when I'm sat odd or don't move for a while, like most people. Anxiety MAKES us assess every moment of our life, including minor symptoms. It then exacerbates the feelings, massively.


I don't know if I'm actually ill or not, because I'm still fighting anxiety, BUT, I feel better knowing I've been checked and I've DOUBLE checked with all the relevant professionals.


DO NOT GOOGLE OR GO ON MS/CANCER FORUMS. This will make you panic, make the symptoms worse, make you cry, etc.


I've also sat there and thought my life was over and my partner will leave me. I've even thought it was over when I started to realise the majority of my overall problems in life is anxiety....because I worried anxiety was going to make me crazy/very depressed and on my own.


From what I've been told/read, MS is very tough when it does hit. VERY tough. As in, people have serious eyesight problems/black spots etc, cannot physically move limbs (not just gone numb from usual pins and needles we all get) for a long period of time, cannot pick things up properly, have serious dizziness, etc.


None of my problems are serious, I just make them feel serious. My dizziness was attributed to Menieries Disease, but now they think the first ENT specialist was incorrect, as my hearing is great (luckily) and has been all thr way through dizziness.


The new ENT specialist thinks I have vestibular migraines....but without pain, hitting the balance part of the brain, then silently going away. Then the brain takes weeks or even months getting the balance back in check.


Guess what it does? Comes back again. This has happened to me around 9-10 times in 2-3 years. At the moment, it has gone.


Vestibular migraines cause anxiety as the patient tends to worry about the dizziness. Who wouldn't right?


From what you've said, and I'm not GP or specialist, but I think anxiety and health anxiety is making you worse than you actually are.


Please see a GP for reassurance


Good luck. I fight anxiety every day and at the moment it is based on psoriasis! Plus the fact I'm not happy because I'm still anxious.


PS - My GP said NEVER google. I've said it above. Seriously, don't do it. Just trust those dealing with you. I have banned myself from googling unless its to HELP with anxiety like 'how to cure it' etc.