Questions, questions and more questions!

New diagnosis and before diagnosis
1

Hi everyone. I’m not sure if I’m posting in the correct place and I’m not sure if any of this will make sense but here goes!

I am in what seems like the very early stages of a diagnosis and am looking for a bit of advice. It’s a very long story but I shall try and do the ‘short and sweet’ version.

It all started last August with a hospital admission, from the doctors surgery, for a suspected bleed on the brain/stroke. Bloods and MRI done which were all clear. Thankfully I had neither of those and the rather dismissive doctor said it was psychosomatic. Feeling rather embarrassed and slightly angry I was sent home. From then until February I had a weird list of symptoms;

  • tingling and numbness in arms & legs
  • pains in elbow/wrist
  • Body jolts whilst sleeping
  • balance problems/dizziness
  • cold hands and feet
  • Difficulty with prolonged use of right hand

Numerous visits to the doctors came up with nothing other than a bit of arthritis in my neck after an X-ray.

End of February arrives and I end up in hospital again, and again with a suspected stroke, however this time my symptoms were accompanied with a pressure/tightness around my chest. This time I was diagnosed with a migraine. Since then Ive gained new symptoms

  • Lightheadedness (worse when doing light exercise)
  • Swollen toes, fingers
  • Itchy legs
  • tight/heavy chest for differing lengths of time
  • Tiredness
  • Twitching eye
  • Tingling tongue
  • Needing the loo more often

I honestly started to think I was going mad! My doc seemed to think migraine was a good diagnosis and advised me to buy migraine tablets. I think she was staring to think I was a hypochondriac and to be honest, I started to feel like one!!! I avoided going to the doctors for weeks and even stopped having conversations with people about how I was feeling. When I felt unwell I would go into another room or hide in the toilets until I could compose myself enough. It actually got quite lonely for a time. (Sob story, sorry!)

However, last week I decided enough was enough. I’m a fairly level headed person who works hard and has three young children, the youngest of which was born during all of this. I’ve gone from running about like a lunatic, working, gardening, exercising and generally never sitting still, to someone who can barely make it to lunch time without having to lay down for a few hours because I’m literally exhausted!!

So, in a moment of madness I went to the doctors and saw a different GP… I reeled off the list and she looked at my history… to my amazement she seemed rather cross at my other doctor and wasn’t really shy in saying so! She has booked a cervical and thoracic MRI, a chest X-ray, a weird and wonderful array of bloods and said that a lumbar puncture could be next on the list. I was a bit taken aback and asked what she was thinking… she said that it could be a number of things and we could eliminate a lot of them by doing these tests. However, she said MS was the first thing she thought of as I was listing my symptoms.

Anyway, my questions are, is she barking up the wrong tree and has she just put two and two together and got 5?

Could it be MS even with a clear MRI that I had in Feb and Aug?

From what I’ve gathered, this could be a long road to discovery, whatever the discovery may be.

So after my NOT so ‘short and sweet’ post, I shall leave it there. Any advice, similar symptoms, anything, would be gratefully received. Thank you to anyone who has the time and patience to read my waffle. And please, if I’m going mad then feel free to say so!!

Many thanks, take care, Jay.

ps, can I add that I’m 31yrs old, not sure if that makes a difference!

2

hi jay

your symptoms do sound like ms or some other neurological condition.

the second doctor sounds brilliant and the first one needs some in service training!

meanwhile make a list of your symptoms and when they started/ended/remain ongoing.

rest as often as you need.

avoid stress because it only makes it worse.

let us know if you are going to see a neurologist.

age used to make a difference but not any more.

i was told that i was too old to have ms (just before my 50th) and not by a neuro.

mainly relax because it sounds like you have a hectic life.

carole x

3

Hi Jay, so sorry you are going through all this. Maybe when you had your first MRI they were just looking for a bleed on the brain. Good you went to a different GP :). I hope it is not too long before you get a diagnosis. x

4

Hi Jay

As Carole said, it could be MS, but it might not be as well. MS shares many symptoms with other diagnoses, even fairly straightforward issues like some vitamin deficiencies.

The fact that your GP is on your side and is ordering an array of tests is good, but I can’t help wondering why she didn’t refer you to a neurologist when she suspected MS?

The problem is that a GP can order a battery of tests but regardless of the results, cannot diagnose MS. Only a neurologist can. (Assuming that’s indicated by the test results.)

So, my thoughts are that next time you see this GP, and hopefully you will to get the results of the blood tests, pending anything appearing on the bloods which explains the symptoms, ask for a referral to a neurologist.

Your GP can still order further tests, but really the results should be looked at by a neuro.

Sue

5

Hi, thank you everyone for taking the time to reply. I am keeping a note of my symptoms and am trying to be kind to myself by resting etc. Just a bit frustrating when I am so used to being on the go all of the time.

Thanks for your advice Sue, I did wonder too why she hadn’t referred me but it wasn’t until after I’d left the appointment that this crossed my mind. I think I was a bit overwhelmed with everything she had said. I will ask for that referral the next time I go. Do I just ask outright? I had a few blood tests in February and included in those tests were things like Vitiman D, B12 etc and they all came back fine.

I think my main concern is that I sound like I’m going mad. Having all of these weird and wonderful pains and sensations when on the face of it, I actually look and sound absolutely fine!

Its an interesting point that perhaps when I had my MRI there were looking for a bleed… surely they would have noticed anything else? Perhaps not. I just assumed that they would look at the MRI and see what was there in general.

Anyway, I think it’s just a case of wait and see… I’m keeping an open mind and keeping away from Dr Google! I know that there are a huge amount of people that are far worse off than I am at the moment so I’m just thankful for that.

Any further thoughts or advice would be great.

Thank you all again,

take care, Jay.

6

I think from everything you’ve said that you’re not going bonkers, unless you also have a load of other symptoms that you’ve not mentioned!

It’s also very normal to be a bit gobsmacked by a GP mentioning MS. This would be why you’ve walked out from the appointment thinking ‘bugger, why didn’t I ask for a referral to a neuro?’ It’s like your brain just shuts down and only starts working again when you’ve had some time to assimilate the info.

So, when you see the doctor again (and in your shoes I’d be making an appointment to get the results of the blood tests, so even if you’ve not had the blood taken yet, make the appointment for 5-7 days after the blood test), write some notes to remind you everything you want to say and ask. And get the notes out while you’re there!

Sue

7

Thanks Sue, I’m going to make an appointment when I go for my bloods and take it from there. I’ve noted my symptoms and recalled dates and details. I could’ve kicked myself when I got home thinking about the things I could’ve asked. Like you say, I just shut down, nodded and left.

The pins and needles/burning is driving me mad today… both arms and legs and in the last hour my face! I’m definitely not imagining it! The weird feelings do make you feel like you’re a bit crackers though!

Ive never met anyone with MS or neurological disorders so your support is great. It’s nice to know that there are still kind people out there that take the time to help others. It can be a rarity in this day and age! I do feel bit isolated at the moment and find that it’s difficult to put into words what is going on.

Thank you so much for your advice. I really appreciate it.

Take care,

Jay

8

Hi Jay,

It doesn’t help when a doctor brushes off neurological symptoms with bald statements like “psychosomatic”.

My neurologist refused to include MS as a possibility. He said I was “too old” (at 55), and that it was a “functional” disease, then promptly referred me to a psychiatrist.

Eventually a lumbar puncture provided enough information for the MS diagnosis but he didn’t seem happy about having to give it.

Happily he is now retired. Much to the relief of the MS community and quite a few professionals.

Regards,

John

9

Jay

With regard to pins and needles / burning feelings, when you see your GP, see if s/he will give you a prescription for Amitriptyline. It’s a drug that in higher doses is sometimes used as an anti-depressant, but in lower doses is good for neuropathic pain of the burning type.

Generally people take it in the evenings because of a slight sedative effect (which can be helpful for sleeping. It can make you feel a bit dopey in the mornings, so the best idea is to take it by about 8pm, so that any side effects are gone by morning.

I’ve been taking it for quite a few years. It’s not a drug that suits everyone, but it’s worth a go. You don’t need to have been diagnosed with anything to have it prescribed. I’d suggest (and I’m sure your GP would agree) that a small dose of about 10mg wouldn’t hurt, and if you find that’s OK, then go up to maybe 20mg. (I take 40mg quite happily but it’s always a good idea to take the lowest dose of any drug that will give you the desired effect.)

Best of luck Sue

10

Hi MisterJay

First and foremost you are NOT going mad. It’s awful when you’re going through something like this and no one takes you seriously. It’s good that your second GP is doing something, well done for persisting.

When I saw my GP when I knew something wasn’t right one of the things he did was to do reflex test just below my knee and just from that he referred me to the neurologists. They then arranged an MRI and then a LP, then I got my diagnosis of PPMS.

i hope you get things sorted out real soon. All the best.

Jane10

11

Thank you all so much for your kind words and advice. I really appreciate it! I knows it’s going to be a long road to get to the bottom of what’s going on so I’ll have to plod along. Let’s just hope that I find an answer, whether it be MS or not.

Many thanks once again,

Jay.

12

Mister Jay,

please let us know how you get one with any further appointments.

take care, jane10

13

I will Jane. Thank you again.

Take care,

Jay

14

Hello again!

I am currently waiting for my neuro appointment (December) after having to virtually go back to the beginning as my doctor retired and my new doctor wanted to order an array of tests before the referral! I had a blood test that showed high cortisol levels and was referred to endocrinology with a suspected adrenal gland tumour. Anyway, after a few weeks and more tests it turned out that I didn’t have a tumour, thankfully, but I was effectively back at the start! Hence part of the delay in the referral.

Anyway, I’m having another ‘episode’ (for want of a better word) at the moment and have felt very unsteady on my feet for the last couple of days. As well as pins and needles in my legs, swollen toes, lightheadedness, weird feeling like I’m walking on sponge, tingling tongue and an aching back and not forgetting the weird chest pressure. All of these things are more or less daily and have been for months, however they are more apparent at the moment as opposed to being a daily nag - if that makes sense.

Anyway, I’ll get to my point! I was wondering how I can get around, like walking to the shops without holding onto walls and looking like I’ve had 5 pints! I know this sounds like a silly question but seeing as though I haven’t technically got anything wrong with me, I don’t know how I can work round it.

I don’t know if this actually makes sense, my heads a bit fuzzy tonight. Anyway, if anyone understands a word of this jibberish then any advice or help would be great!

Thanks

Jay

15

Something else I forgot to mention, which may seem rather random, but I also feel really weird when I have a bath. The only way I can describe it is it’s as if I’m going to faint… I don’t actually faint but that’s the only way I can put it into words.

16

Hi Jay, I too on my bad days feel so unsteady it is hard to walk without holding on and looking drunk. Would you be able to get a stick just to steady you? I have got a light weight wheelchair for those days but of course I need it pushef lol. I have a crutch also which helps. It gives me some confidence to know that I can lean on it. Good luck with the new doc. I am awaiting my LP results in limbo atm Regards Kim

17

Hi Kim,

I did think about a stick, which to me sounds so ridiculous! It’s not as if I can’t walk, I just feel unsteady and get really lightheaded. I tend to take the baby with me when I go out, just as an excuse so I can hold onto the pram. But obviously it’s not very practical dragging the baby out in all weathers just so I can hold onto something. The problem is, how do I go about obtaining a stick?? Do I ask the doctor? Will she think I’m being ridiculous? What do I say to family and friends and people at work? Nobody knows what’s going on and I don’t want to tell anybody! And then I wonder about funny looks in the street etc. The kind of ‘why has he got a stick, there’s nothing wrong with him’ kind of looks. Sorry, this is turning into a woe is me post!

I know these questions don’t really have answers that anyone else can solve other than myself. I just feel a little bit trapped at the moment with nobody to talk to.

Hope you get get your results soon. Waiting is a pain in the bum!

Take care,

Jay

18

I remember that conundrum. When should I get a stick? Do I need one? Who should I get one from? What should I do? I don’t want to look that disabled!!!

Eventually I bought a stick from a walking stick shop. Felt very very conspicuous and rather embarrassed using it. In retrospect I could have got one from occupational therapists or maybe physiotherapists.

Then later I decided a crutch is actually more stable. And I saw a woman using a bright pink one in Sainsburys. I had crutch (not crotch!) envy!! So I searched the internet and found there are lots of places to buy sticks, crutches, all sorts from. I bought a pair of crutches (purple) from a company called Cool Crutches. There are lots of other places some cheaper than others. I used mostly just one crutch, later one crutch and a husband, eventually I was using one crutch in the house … then two …

But I definitely recommend getting a walking aid probably before you actually definitely need it. Then you can practice! Plus, you’ve got your head round the idea so that when you have to use one, there it is.

You can get sticks and crutches on the NHS quite easily, but if you can afford it, get a nicer one. You can also get folding sticks, which might be quite useful, keep it in your bag / car for when you feel the need.

And don’t be silly like I was, there’s nothing wrong with using whatever makes you safe!

Sue

19

Thanks Sue. I know that I need something, I think it’s probably down to my age that makes me feel a bit silly about it. And also as I haven’t actually been diagnosed with anything makes me think are people going to think I’m just being silly. I know I shouldn’t care what others think, but it’s easier said than done… at least in my head anyway. As well as all that I don’t want to face the questions… why have you got a stick? What’s wrong with you? Etc. I’m driving myself mad with it all. I’ve just been to the shops, with the pram lol, and now I’m home the pins and needles are worse and I feel drained! It’s literally a 2 minute walk! Thank you for the advice, it’s really helpful. I did wonder though, have you or anyone you know suffered with the bathing issue I mentioned earlier in the thread?? Don’t know if this is a ‘thing’ or just me. Jay

20

With regard to baths, I remember years ago feeling really lightheaded after a bath. Maybe the heat or something? Other than that, I can’t add much. I’ve not had a bath for years. (Wet room!)

Su