nothing wrong with me?? :/

New diagnosis and before diagnosis
1

Please help…

I received a letter from my neuro today stating my mri of brain and c-spine was normal and no further investigation would be taken, I would be seen again in 12 months…

WTH??

How can I have so many symptoms which are disabling me, have caused me to leave work and also my husband has had to reduce his hours as I just cannot cope with looking after our 4 children and our home anymore.

I have had 3 episodes starting in oct 2009 with visual disturbances, followed by balance problems, memory issues, my feet feeling like they were in cotton wool, pins and needles… the mri of brain was clear, referral to neuro, appt took 8 months by which time my symptoms had gone and I was pregnant therefore I was discharged.

2nd episode in I had extreme pain in my wrists, numb hands and painful elbows referred to rheumatology, x-ray normal although nerve conduction showed radiculopathy on c7

3rd episode in feb 2012 with confusion, pain in feet, hands still painful and tingling at night referred back to neuro. Clinical exam showed upgoing right plantar, clonus bilaterally and brisk reflexes. Referred for mri scan. Also was tested for b12 and folate, both normal.

Now mri is normal and no further investigation? What can I do? I feel like a massive hypochondriac, I have muscle fasciculations visible in both feet and calfs and I also have jerks throughout my body and tremors in my hands which prove that there is something going on but I feel totally deflated that the mri has shown nothing… don’t get me wrong, I don’t want to have ms but I do want answers and the only ones I am getting are that there is nothing wrong with me.

I just feel exasperated, I thought I might be getting somewhere but I’m not. My problem is that my gp would not medicate me for the muscle spasms, fasciculations and cramps, it had to be done under the neuro who I’m now not seeing for 12 months? I am already on amitriptyline for the burning pain in my feet and hands but I don’t feel it is helping at all.

I am getting more weak in my hands by the day, I can no longer do buttons or pick small things up at times… my hands and arms hurt as if ive been doing star jumps all night… my hands cramp around anything that I am holding too… do I just have to live with this?

I don’t think I can cope anymore… I just don’t know what to do… hubby is now thinking that I should be fine as my mri was normal, there is nothing wrong with me so move on…

What now? Sorry I’m really upset and just feel really alone just now L

2

Hi there,

First off, it doesn’t mean there’s “nothing wrong with you”.

If it did, you would be discharged completely, and not scheduled for a review in a year.

All it means is there’s no clinical evidence, YET, that they can act on. It’s not that your symptoms aren’t believed. It’s just that a diagnosis can’t (usually) be based on symptoms alone, as there might be other things that could cause this. Until there is pretty clear evidence of the cause, they can’t recommend a course of action, because you might receive the wrong treatment (which, in some cases, might be worse than none at all).

That’s why they will keep it under review, and continue to look for evidence. Depending on how your year goes, they may try scanning again at the end of that time (there’s no point re-scanning immediately, as there won’t have been a change).

If things deteriorate significantly before the year is out, you should contact your GP and ask for an earlier appointment, as this might be a sign there is renewed activity, which might be detectable on scan.

At the moment the possibilities are either: (a) it isn’t MS - which would explain why nothing is seen, or (b) it IS MS, but the evidence remains below the threshhold for current technology to detect it. Generally, the longer somebody has MS, the less likely that damage wouldn’t show up on scans. So if it IS MS, it’s going to show up eventually. But in the early stages, it doesn’t always.

As an aside, you should be able to get treatment of symptoms without a confirmed diagnosis. It’s only the more strategic disease modifying drugs (DMDs) that can’t be given unless they are sure. Symptom relief can be prescribed to anyone.

Hope this helps,

Tina

Tina

3

Hi mrsgreen,

Just to let you know that you’re not alone. I too have seen a neuro…last November…had MRI and nerve conduction tests and numerous blood tests…all ok. I also have to see him again this November which is a year after I first saw him.

I’ve been back to my GP and I’ve told him that I can’t live like this anymore he reluctantly put me on ampitryline (sorry for the spelling). I have to see him again in two weeks. I have also recently seen my occupational therapist who does not have a clue…'cos I don’t ‘fit in a box’ with my symptoms.

I’ve been to rheumy and had x rays …all ok…I have to see them in a year too.

All I can say is ‘hang on in there’ and carry on…go back to your GP if you have to…make them hear you…I know Its hard…I too feel like they think I’m making It all up!

Good Luck,

Wendy.

4

Hi Mrs Green

You’re certainly not a fraud or hyperchondriac. It’s horrible being left 12 months and struggling with symptoms.

If you’re struggling with symptoms I would ring the neuro’s secretary and explain the GP won’t medicate and your next review isn’t until 1 year later. They can’t just let you struggle.

Good luck

Reemz

X

5

Hi, I can totally understand how you feel, as my story is a similar one.

Back in 1999 I saw my first neuro, due to falls and not being able to pick my left foot up to walk.

I had several MRIs, an LP, 2 EMG tests, plus other tests and blood tests.

Nothing proved anything! Yet I am a full time wheelchair user, (8 yrs)cannot walk at all, need meds to control spasms/spasticity (they work about 80% of the time). I also take amitriptyline…75mg at night. Any less and i have chronic nerve pain.

I have been diagnosed with probable PPMS…then HSP…then back to PPMS…now it`s SP, cause unknown.

I am awaiting a referral to a top MS man in Leeds.

Damned frustrating, innit?

luv Pollx

6

Thanks everyone, i really appreciate you taking the time to answer my whinge.

It is extremely frustrating, especially seeing as i had clinical symptoms when i saw the neuro (clonus,babinski and reflexes and visible fasiculations), he said himself that he expected to find the cause of my problems on the mri. So for the mri to be normal and have nothing at all on it to explain my symptoms has come as a bit of a shock, i have been so poorly this time around, and my symptoms havent gone like they did the previous twice, i am now on month 5 of my symptoms whereas previous episodes have only lasted 7 weeks and 10 weeks and i am getting weaker, not better as time passes. I just thought that whatever was going on would be found and could be dealt with, a normal scan wasnt what i expected at all. It makes me feel like i’ve been a bit neurotic :confused:

Are you in Yorkshire Poll? I am in South Yorkshire and get seen at my local hospital by a neurologist from Sheffield Hallamshire, the neuro i see isn’t an ms specialist but i did get referred to him initially when i was discharged due to being pregnant so i have met him. Neither seem to have a good bedside manner lol xx

7

I completely agree with Reemz - you are NOT a hypochondriac, nor are you neurotic! It is impossible to imagine, fake or subconsciously mimic your clinical exam results. There is something very real going on

There are actually quite a lot of neurological conditions that don’t show on MRI. Unfortunately, they can be tricky to diagnose, but leaving you for a year without support when you are really struggling seems very cruel. From what you’ve said it sounds like you need a muscle relaxant like baclofen to help your symptoms. Could you try asking your GP to get approval from your neuro for it (or something similar)? They may not want to give you anything until they know what’s going on, but there must be something that is safe surely???

Please push for help - it’s a sad truth that it’s the assertive patients that tend to get more help.

Karen x

8

Hi, you certainly aren’t a hypochondriac. Up going plantar reflexes and clonus are neuro signs of a chronic problem, usuually the spinal cord and an upper motor neuron problem. They usually go with spasticity so I agree with Karen and maybe ask your GP about baclofen. I take high doses and couldn’t function without it. My GP wouldn’t give me anything either and I was housebound. It was my MS specialist who suggested it.

Get your GP to contact your neuro as you can’t go like this for another year.

You also have C7 radiculopathy. Radiculopathy often appears with a myelopathy in the spinal cord. The radiculopathy could be causing the symptoms in your hands.Fasiculations often tend to go with a lower motor neuron problem.Saying that I use to get them in my thigh and I don’t have a lower motor neuron problem.

There are many disorders that don’t show up on tests and neuro’s only diagnose something after a watch and wait. I have an upper motor neuron problem, have lost vision. Like Poll I’ve been having symptoms for 14 years, use a wheelchair and still don’t have a diagnosis. I see my neuro next month after a fourteen month wait.

I don’t think your neuro has done enough investigations to leave you for a year though. You haven’t had a full spine MRI and things can show up on the thoracic spinal cord. Have you had somatosensory evoked potentials or visual evoked potentials? Have any blood tests been done to look for autoimmune problems ?

Could you not ask for a second opinion ?. As a few of us have said there are many other things it could be rather than MS.

Jacqui x

9

Mine came back with demyelination, but they are checking for a range of autoimmune disorders, CPR and lupus. Not sure why though. If you have a problem and they haven’t found the reason keep pushing them. Pals can help. Also I have unrelated autoimmune hypothyroidism and when it goes out of the normal range it causes me problems that wouldnt show up on scans. It sounds like they need to think more carefully about it. I also had a spinal MRI and ver as standard procedure.

10

Hi I’m sorry to hear you are having so many symptoms without a diagnosis. Please be reasured that this does not means ther is nothing wrong with you its just that all the evidence they need to confirm diagnosis has not been seen yet. The Neuro would have signed you off completely rather than keeping you on there books if they though everything was okay - it so obviously is not and that is why he/she has kept you on - the neuro probably thinks its MS too but they have to discount othher things and await relapses that give definate evidence. You know what your body is doing and you would not have been referred to a Neurologist unless your GP or hospital was concerned about these symptoms. Unfortunately many people live for years in Limboland and this can be very difficult.

As you are having all these systems and as it is obviously putting pressure you and on your family have you applied for financial help through claiming DLA to help you with your mobility and personal care needs? You can get this without a diagnosis if your symptoms are noted by your GP and Neuro. Also you could ask for a second opinion.

Its a very difficult time and I really feel for you as many of us have been through this (including myself as even though I had my diagnosis many years ago when I was 19 I’d had relapses from being 4 years old)

With love, Mary