It's official - they don't know what's wrong with me! [Archive]

View Full Version : It's official - they don't know what's wrong with me!

DaisyP

11-02-15, 14:25

So I went to see the neurologist this morning, she was a lovely lady. I told her all my symptoms which for those of you who don't know are:

loss of sensation/numbness
tingling
pins and needles
burning
buzzing
twitching
feeling like there is a stray hair on my hand
perceived leg weakness
headaches
blurry vision
confusion
feeling spaced out all the time

So a lot of weird unexplained things!

She was not concerned in the slightest - she said she wish she could say this is what it is but she sees so many people on a daily basis - especially young women - who have these weird neurological things happen and there be no logical explanation to it at all. Sometimes they go away, sometimes they hang around but because the brain is so complex they have no idea what they all are.

I said that although i know that it's a vicious cycle because i worry about it and anxiety probably makes it worse but that i truly believe what is going on is not just anxiety. She said she agrees with me, she said stress and anxiety can push our nerves to the limit and cause all sorts of weird powerful symptoms but that because the sensations are physically there she thinks there is something completely benign going on which is being made worse by anxiety and stress.

She is sending me for an MRI (i had one last year too which was clear) but she said that she is purely doing it for peace of mind for me and for my GP, & that she doesn't think there is anything wrong at all with me. She said that she thinks that a lot of it is because i am thinking about it all the time too.

Ive been put on beta blockers because i am getting daily tight neck and headaches, she said it will also help the anxiety too and calm my nerve endings down. She also strongly advised acupuncture which i will definitely be doing because i have had so many people recommend it to me.

I wanted to post because i know there are a few people here who go through the same anxiety and worry that i have been going through and i know reading a positive post is always reassuring because thats ultimately what you look for.

My MRI will be in a couple of weeks and then i have a follow up appt with the neurologist in April to discuss the beta blockers and the MRI. So i will keep my fingers crossed for it. I trust her, i know that drs and consultants know what to look for, they can rule things out. I didn't even mention MS to her - i wanted her to make her own mind up about it. She didn't ask me if i had had any symptoms which related to MS so i fee really reassured by that. Had she asked me if i had so and so which i know was a symptom of it then it might have made me freak but she didn't.

She said she knows pretty much that my MRi will be clear. Fingers crossed.

Mrschurchill

11-02-15, 14:41

Well done for going to the appointment. I have been experiencing headaches for a week now, never suffer from them normally. Very pressured head and facial ache. Tight neck and very tense shoulders. Have such a horrible BT fear right now (All other cancer fears have gone funnily enough!) Horrible cycle and now because it's all I'm thinking about it's just constantly there :(

Serenity1990

11-02-15, 14:49

That's pretty much what I've had from start to finish. The good news is they're really good at ruling out the serious stuff, and everything else is just benign. My current neurologist said, "to be honest, the vast majority of neurological symptoms we see we never find a cause for, and these patients get better with time. What I can tell you is that you do not have MS".

Toronto girl

11-02-15, 14:57

DaisyP

11-02-15, 14:58

Thanks Mrs Churchill. I hope your head gets better soon. Are you under stress, drinking enough water? The neuro said to me this morning that she scans many many many brains a day and diagnoses a BT once every 3 years...they are so rare and also IF someone had one they are normally always benign.

Isn't it weird Serenity? I think there is so much about the brain they don't know. My neuro said the same, she said she sees the weirdest symptoms with no explanation. I said i would feel better knowing i had a diagnosis so at least i could put it down to something but she said that unfortunately because there are so many unexplained cases it is impossible to say it is something. I hope i get better with time, and you too.

Serenity1990

11-02-15, 15:10

Well my first neuro said it was post-viral. The second said it was BFS. Whatever it is, I've seen three neurologists at two of the best specialist teaching hospitals in the world, I've also seen an infectious disease specialist who is a professor specialising in ME (so he sees a lot of MS as they're similar). All have said broadly the same thing: ride it out, it'll take a long time but it'll go away, and I definitely do not have MS. They differ in terms of causality but with such ambiguous stuff I suppose that's to be expected.

Toronto girl

11-02-15, 15:19

Serenity, I often wonder if mine is post viral. If you don't mind me asking, what are your symptoms?

Mrschurchill

11-02-15, 17:08

Thanks Daisy - yeah the headache is the thing causing me the stress lol it feels very like a sinus headache as it's all on the front of my face, eyes feel tired etc. No runny nose though?

That's a good enough statistic for me!!

DaisyP

11-02-15, 17:23

Daisy, do you know what you were doing when your symptoms first began?

It sounds like you are in good hands and that you are fine. Now you ( and me ) have to look for a way to accept these symptoms until they go away, and believe me I want them to go away. My symptoms might not be dangerous, but the discomfort they cause is huge. I don't even want to wear jeans because they irritate my legs. Blah!!

Daisy I hope you find peace now that you have seen this specialist,and your MRI won't show a thing, especially since you have already had a clear one.
Keep us posted and I would love to know if the beta blockers help.

Feel well!

Thanks TorontoGirl! My symptoms began about a year ago, i had surgery which went wrong and i was so incredibly stressed and traumatised. I then got a severe infection - ended up with sepsis and was placed on IV antibiotics for three days and it was intense. The symptoms haven't really gone away, they've been there but sort of come and go. Some days are easier.

Like you, although you know it's ok it's horrible having to have these symptoms everyday. I am hoping the beta blockers calm my nerves down. Trouble is i am a student nurse and i have heard beta's can make you drowsy...ill look them up and see...

Hope you start to feel better soon.

---------- Post added at 17:23 ---------- Previous post was at 17:20 ----------

Thanks Daisy - yeah the headache is the thing causing me the stress lol it feels very like a sinus headache as it's all on the front of my face, eyes feel tired etc. No runny nose though?

That's a good enough statistic for me!!\

Mrs Churchill it's a good statistic to focus on isn't it?
I get that too, like a headache in your eyes and that sort of area. Have you taken a painkiller at all? Did it help?

I have had an on/off headache for about a month now but according to the neuro i am fine! i am sure you will be too :)

Toronto girl

14-02-15, 16:26

Daisy, as you said in your response to my post about neurological symptoms, what you wrote does make me feel a it better, but it is still pretty disconcerting to think that these symptoms could be physical . It is scary actually, because I feel so uncomfortable all the time. (Except when I am in bed, go figure) any encouraging thoughts are welcome.

I have had a prickly sensation in the skin of both legs for quite awhile. After being extensively tested with nothing ever being found, I am left feeling, what next.

DaisyP

14-02-15, 20:18

I know, it's frustrating to have these weird unexplained physical symptoms with no explanation but keep remembering it won't hurt you.

I've been put on beta blockers - For my headaches but also as a bonus they help anxiety. Hope it settles my nerve endings a bit x

Serenity1990

14-02-15, 20:47

I can't get the beta blockers. Because (until all this started) I was really fit and worked out a lot my RHR is about 55, and my doctor said he didn't want to lower it any more.

Vigilante

14-02-15, 20:55

I can't get the beta blockers. Because (until all this started) I was really fit and worked out a lot my RHR is about 55, and my doctor said he didn't want to lower it any more.

I think this where I come unstuck, every time I try the likes propranolol I get further issues, like muscles blowing out too easy during exercise, freezing cold hands and feet. My resting rate was also between 54-60 prior to the last few weeks craziness.

DaisyP

14-02-15, 21:05

Oh yes that would make sense for you guys not to have it. My heart rate is quite high, around 80-90bpm which makes no sense as im quite fit really but think it's just that I'm a woman as women tend to have a higher HR.
I hope the blockers help me

Serenity1990

14-02-15, 21:56

DaisyP

14-02-15, 22:08

Yes mine has been that high before!

Serenity1990

14-02-15, 22:20

It didn't worry me as it regularly goes to 160-170 when running. However it was one of the first things that made me realise I had an anxiety problem.

When this all started I was worried about my heart!

DaisyP

15-02-15, 17:49

It's weird how everyone with HA worries about different things. I have never been worried about my heart even when i had a really high HR. That'll probably be the thing which goes wrong in 40 years or so because I don't worry about it ha ha!

I am still feeling a bit weird, although i feel better for seeing the neuro, i feel a bit anxious today as my symptoms are quite bad. I am worried about the MRi whereas yesterday i felt much better :(

Toronto girl

15-02-15, 19:47

I agree, I don't worry about my heart either. My fears are exclusively neurological or autoimmune. Maybe it is because those are the persistent symptoms I have had. It freaks me out and I am sure that isn't helping me one bit.

I hang onto stories such as my sister's boyfriend had nerve pain in both his feet and hands for a year and then it just went away. So it is possible for them to go away.

Vigilante

15-02-15, 19:55

Daisy do your "symptoms" get worst at certain times of the day?

DaisyP

15-02-15, 21:36

I agree Toronto girl! I had a bath tonight and a glass of wine, result? Much better and relaxed. Got out and my hr was 110 bpm. Doesn't bother me in the slightest! Not worried about heart at all! I'm a student nurse so can see that rationally. Maybe a placement in the neuro clinic would be good but im dreading it - the only thing I'm dreading!

Hmm, yes at night I would say x