Worried about seeing dr with symptoms

New diagnosis and before diagnosis
1

Hi,

I don’t really know where to start, all I know is that I feel like I am going mad.

I have been having strange symptoms of something for nearly 10 years now. I have been to lots of different gp’s over the years and end up coming away more confused. I have only ever been offered blood tests which have always come back clear, although once a year it will show I have slightly low folic acid levels.

It started about ten years ago with pain in my hands (just after I had my first child). My hands hurt in a sort of cramp like pain when I am cleaning or writing. I can write around two sentences before I have to stop to stretch out my hand before I can carry on. I saw my dr about this and she just said ‘well that doesn’t seem like a problem’ and didn’t want to talk about it any further.

Since then my hands still hurt daily. Around a year or so ago my hand went into a sort of ‘claw’ like position and I couldn’t straighten it out. This only lasted around a day or two. I have also had bladder weakness for around a year. At first I thought I may have had a urine infection. I feel the need to wee constantly, it reminds me of when I am heavily pregnant and the baby is pressing on my bladder (I am not pregnant!).

I have also had trouble in my left foot for quite a few years. I have never injured my foot, although it feels like I have. At certain parts of the day it hurts to put any pressure on it and feels very weak so I end up walking with a limp at certain times in the day.

My joints hurt daily, my arms hurt when I put washing from the floor into the washing machine (I sit on the floor to do this) and also brushing/drying my hair hurts and will have to stop to give my arms a rest before I can continue.

I have experienced tingling/numbness in my hands and feet for years for no apparent reason, although this is not everyday. My eyes also went blurry overnight, the optician said this could be stress and gave me reading glasses.

I also sometimes have extreme fatigue. I can sleep for 14-18 hours a day when this happens. Sometimes I think that heat can make it worse. I had a scary moment recently where I had a hot bath and it made the fatigue so much worse, so much so that I didn’t have the energy to get out! It took me over an hour and a half to get the energy to get out, it felt like an invisible boulder was on me, pressing me down.

I also feel like my brain isn’t working properly, I can’t take in as much information and haven’t got a lot of mental energy. Filling in a form for example has become increasingly difficult, its as if someone has told me to solve a very hard maths question.

I think I have listed everything that has been worrying me, I will probably think of another one once I have finished. I guess my question is do I need to pursue this further with the dr and ask for a referral or do you think my symptoms are nothing to worry about and quite normal for a person to be feeling? As I said I have been to my gp before and I am always told the same things - that it is because of my age (I am 31), that it is normal wear and tear, that I need to exercise more, that maybe I’m depressed (I’m not) etc etc. I am so tired of the same advice from the dr that it has put me off going, but at the same time I am scared that these symptoms may mean something also. Has anyone else had the same symptoms as me? Did you ask the dr to refer you or did they suggest it?

I’m sorry for the really long post and I thank everyone who has read it and also anyone who may be able to give me some advice.

Take care, Sophie

2

hi sophie

it appears that you have been seeing doctor google.

stop seeing that quack.

your GP should be trying to find an explanation for your symptoms.

has he had your B12 and D3 levels checked because low levels of these can throw up all manner of weird symptoms.

most GPs have little knowledge or experience with neurological matters.

see what he says when you ask for B12 and D3 checks.

then gently suggest that if there is nothing physically wrong maybe it could be neurological.

doctors don’t like self diagnosis so don’t mention ms.

carole x

3

Hi Carole,

Thank you for replying.

Yes you are right I have been on google. After not getting anywhere with drs over the years and having perisitant problems it makes sense to research tingling, numbness, bladder problems etc. which led me to this forum.

I am not sure if he has checked the things you have mentioned, I will ask when I next go.

Also I forgot to mention driving, which is probably the main reason why I am wanting to get to the bottom of my symptoms. For years my left foot will go numb after around 15 minutes of driving, I have to move it around to get the feeling back. My right foot for the last few months will start to shake and tremble which is pretty scary.

Thanks again, Sophie

4

Hi Sophie , ive had that thing u describe with ur hand aching from writing. I was at uni and i had to have a scribe for my exams. I think u need to make a fuss and tell them you want an explanation. You arent old enough to be having that sort of wer and tear especially if ur bloods are clear. If it doesnt work just change Drs. I asked my Dr directly to refer me to a neurologist and because i was also having trouble walking i was really emotional and in alot of pain so he did refer me. Im still not diagnosed yet because my first MRI 4 years ago was clear. But since ive been unwell again dr has refered me again. I wish you all the best x

5

Hi Cosine,

Thank you for your reply. It’s made me feel so much better to hear your advice.

I think I will go back to the drs and push for an explanation, the reasons they have given so far just don’t make sense to me.

I’m glad you were able to still do your exams, what a bad time for your hand not being able to write! I was lucky that I haven’t actually got to do any writing for exams etc.

When is your appointment? Also if your first MRI was clear, did you get diagnosed with anything else and did they prescribe anything for the pain in your hands and the trouble you had with walking?

Sophie x

6

Hi Sophie, Im glad to hear my comment made u feel better! Well the first few times it happened itd only last for 2-3 weeks id be better by the time i saw the neuro so i didnt really bother. Last time i even turned down a lumbar puncture because the neuro was so sure i didn’t have ms. But this time its lasted quite long and i had breathing and walking issues which were quite debilitating so im going to accept every test and force for an explanation. Im on gabapentin which really helps the tightness maybe ur Dr will prescribe u it . My appointment was on the 28th of Feb but the hospital had canceled it so itd probablybe much later now … but whatever im coping with gaba and codiene!

7

Hello Sophie

Carole is right about Dr Google, imo he should be struck off.

But, irrespective of that, it does seem that you’ve had a lot of different problems over the years, and which you could do with having properly investigated.

Getting blood tested for vitamins B12 and D is a good start, but asking your GP if s/he thinks a referral to a neurologist is a good idea given all of your symptoms over the years, wouldn’t hurt either.

You could write a timeline, with rough dates of when things have happened to you, include how long any symptoms have lasted and whether any have recurred or just not gone away. You could take this with you to the GP to ask what s/he thinks. If you are referred to a neurologist, the timeline would help there too. It does help to write things down just to clarify them in your own head.

Best of luck.

Sue

8

Hi everyone,

Thank you for your comments, I am determined to get to the bottom of it all this year, if only for my own sanity.

I’ve been back to see my GP who looked over all the blood tests I have had over the years and I have never had any vitamin deficiencies, my bloods have always been clear.

She has now diagnosed me with M.E. I was relieved to finally have a name to all the symptoms I have experienced and that I was not just imagining it. She said there is no medication for this and sent me away with a printed out leaflet. She said there was no way it could be ms as I would have had numbness/pins and needles for a few days rather than just on and off.

I asked her if she thought it could be neurological and she was pretty positive it isn’t. She said that if she referred me to a neuro he would just send me straight back to her. I asked if m.e. can cause the numbness/pins and needles and foot trembling whilst driving and she said yes, I have tried to find some sort of document or symptom list for m.e. to support this but can’t find anything. The main reason I want to get this sorted is because I am afraid if it gets any worse I won’t be able to drive, I have three young children and it would make it so much harder if I couldn’t use the car.

I wondered what your thoughts were on this? Should I just leave it now in terms of drs and just try and manage however best I can by myself, or should I ask for a second opinion and push more for a neurological assessment?

Cosine - I hope you’ve had your appointment letter through and don’t have to wait too much longer.

Sophie x

9

Hello Sophie

Well I can see what your GP means about symptoms not lasting a very long time. An MS symptom/relapse is supposed to be a new symptom or a repeated symptom that lasts at least 24 hours and has not been present for at least a month (in the case of repeated symptoms).

But, some of your symptoms have gone on for longer than just a few minutes/hours haven’t they? It may be that you have to live with the ME diagnosis, but start keeping a fairly detailed health diary into which you can check what your various body parts are doing over a period of time.

Something that bothers me is that if your feet aren’t behaving very reliably, are you 100% safe to drive? All the time? I remember back in my early days (before official diagnosis), first I found times when my left foot would slip off the clutch, one time at a right turn feeder lane at traffic lights. It could have been very nasty if any vehicles were coming down the opposite carriageway as my car shot across the road (no handbrake on, silly me!). Another thing that began to happen much later (a few years post diagnosis) was that my right foot started slipping off the accelerator or the foot brake. I became worried that I wasn’t safe so had my driving tested at a mobility driving centre. They test a whole load of things, including reaction times. I was just about safe (but I was still uncertain because in a relapse my feet were a law unto themselves); I decided to have my car adapted to hand controls. It is strange at first, but ultimately much safer for me,my passengers and other road users.

Generally I think when you come to really think about it, you know if you are safe or not. If you feel you are, then good. But if you’re not certain, then think about how to make certain.

Sue

10

Hi,

Thanks for your reply.

Yes your right they have lasted longer than few minutes/hours. Maybe the only thing I can do for now is the symptom diary. I am feeling more dizzy and spaced out everyday which only started happening in the last 6 months so I will add that to my list.

I do feel safe to drive at the moment, I have limited my driving and duration of driving and wouldn’t drive unless I knew I was ok to, I was just worried if it got any worse then I wouldn’t be able to and if anyone else had experienced similar.

Sophie x

11

Hi sophie, another thing you could do is simply get them to print off your medical history and change GPs. And in the duration keep a symptom diary. Look around maybe you will find somebody more understanding.

12

Thanks Cosine, I will definitely start keeping a diary, as the other thing that happened over the last twelve months is a bad memory, so writing it down will help.

If it is M.E. I feel a lot better if only just so that I can put a name to it. Just didn’t understand if the tingling, numbing etc was definitely a part of it. Hope you’ve been feeling better these last two weeks.

Sophie x

13

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management | Guidance | NICE have u read that on ME?

14

Thanks Cosine…very interesting. I didn’t really know what M.e. was until a few days ago x

15

Thanks Sophie I have been much better. I saw my GP yesterday for some answers because they were reluctant to tell me anything. After pressing him for what he thought he finally said. " it could be M.S" but he said he needs another mri and an lp but i still havent got an appointment but im getting better at waiting! Also GP implied that i probably will be taking the gapapentin long term.