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Totally Confused Now.

Hello.

 

I've been in limbo for 10 years now. I had my first episode of symptoms not long after my daughter was born. It started with sensory symptoms, hot water feeling cold on one side but not the other, pins and needles, numb patches and then progressed over a week or so to problems walking and finally what turned out to be optic neuritis.

 

I saw a neurologist who said he was almost positive it was ms. He ordered an mri scan and a lumber puncture. The scan was clear but the lp was positive for oli whatsit bands. He was still sure it was ms but obviously couldn't confirm without the scan. I've also had a positive vep test.

 

Anyway, to cut a very long story short, I saw another neuro who basically said there was nothing wrong and i was making it up for attention. I left the search for a diagnosis for about 5 years and just got on with trying to live with the symptoms and episodes as they occured. I had another episode of optic neuritis and various problems with mobility, bladder, fatigue etc. until 2011 when i lost all the feeling on one side from my finger tips to the top of my head and down my shoulder and chest.

 

I was refered to a new neurologist who i saw the end of last year and he basically said there were two choices; benign ms if the scan remained clear and cfs, but the lumber puncture results ruled out cfs.

 

I had another mri which was clear and i saw him again yesterday. At first he was quite happy to call it benign ms and was about to start dictating a letter to the gp to that effect when i asked him for something to help with the fatigue. Now all of a sudden i have chronic fatigue syndrome, and depression and the lumber puncture results are not significant! (and no, i can't have anything for the fatigue because he doesn't agree with the use of stimulants!)

 

To be honest, my head is spinning. I spent yesterday looking at cfs and i just can't make it fit. My first symptom wasn't fatigue, that developed a few years after the other symptoms started. I don't suffer from fevers or headaches, in fact i can only tick 4 out of the possible 15 or so symptoms.  I'm just totally confused. I'm perfectly willing to go along with his suggestions to treat the symptoms, i.e. c.b.t., graded exercise therapy etc, because i don't know what else to do. The mri scan is still clear after all. It just felt like a very confused appointment and i've walked out of there with this diagnosis because he wants to call it something.

 

He hasn't discharged me at least but I really don't know what to do now (other than go along with his suggestions) I just want to feel better. Has anyone got any ideas please?

 

thanks.

blod

This is the biggest load of CRAP behaviour by neurologists I have heard in a very long time. Who on earth ARE these people?!?!?!?!

 

Not only can you not be diagnosed with benign MS just because your MRI is clear, benign MS basically means largely unaffected by mobility problems and you are, CFS cannot explain most of your symptoms (how the ****! can CFS explain ON?!) and one of the most common symptoms of MS is fatigue! And WTF has depression got to do with it?

 

Is this an MS specialist? Because if it is, he should be ashamed of himself!

 

Please please please ask for a second opinion.

 

Disgusted on your behalf,

Karen x

Need I add more to the well spoken words of Karen.

I would go back to your gp with the time line you have written and say you arent happy with where you are at the moment and you want to see an ms specialist.

From what I have seen on here( by Karen i think) there are some people who have an ms dx with a clear mri. Have they scanned head neck and spine?

Pip

Hi Blod,

Ditto to everything that Karen has said and perhaps more to the point how the hell can he keep flitting from one dx to another?! No wonder you're confused!

Off the top of my head I can't think of anyone on these forums who doesn't suffer with fatigue to some degree. Most of us have medication to help us along too.... 

Bottom line is that he (the neuro) is there to find out what's causing your symptoms - that's what his job is - and if he can't do that for whatever reason, then he should be referring you to someone who can, not hopping from one diagnosis to another!

I'd definitely be asking for another opinion and given what you've already said I'd also ask for that opinion to come from an actual ms specialist.

Wishing you luck

Debbie xx

 

 

Thank you both so much! Karen, you've summed up everything I was thinking but as this is now the third neurologist i've seen I'm doubting myself in a big way now.

 

My last mri was head and neck i think. I had a scan of my spine in about 2005. The scans are clear, i can't argue with that so i can see this causes a problem with dianosis. Unfortunately, the second neuro i saw is the local ms expert so I don't think I'd get any joy there.

 

I do have a history of depression, it's well documented in my notes and i don't try to hide that. Most of that was caused by circumstances and is by and large sorted now, though i do get down about the way things are at the moment, i think that's understandable and it's certainly not the same sort of feelings i had when i was clinically depressed.

 

I don't seem to have a lot of signs on examination apparently, he found brisk reflexes last time and weakness in my arm and leg, but he discounted these yesterday after he decided on cfs.

 

So I'm confused. I can't get an appointment with the approachable gp at my surgery until the end of july.  It's a bit of a shambles, isn't it?

Thanks to you debbie, too. Your reply wasn't there when i started typing!! x

It's not right that the neuro is relying on a scan of your spine taken in 2005: a lot of your problems are related to the spinal cord (e.g. bladder and mobility).

If you've seen the local guy, then I think you need to get an appointment outside your area. It wouldn't be much good seeing another neuro locally because he/she will defer to the local "expert".

I hope the nice GP will be able to fit you in much sooner!

Karen x

Gosh no wonder you are confused, I’m confused just reading it!
Can you get referred to a different hospital?
Good luck and hope you get somewhere
Xx

Thanks again, Karen.

 

They did find something on the spinal scan, I can't remember what he called it, but something pushing in towards the spine, though they said there was plenty of room on the other side and it shouldn't be causing the problems. Also, it was too far down to cause problems with my arm.

 

Apparently it's complicated where i live. Due to money and the local health trust I apparently can't be refered out of area. I'm going to query this when i see the gp.

 

How long should a scan take? My last one took less than half an hour and they did brain and neck down to about T5 or T6.  It seemed to be much quicker than ones I've had done in the past.

 

Thanks again for your support. It means a lot.  x

Scans can be quick - it depends on how many, if there's contrast used or not and whether or not the radiographer speaks to you between them. If you had 3 or 4 types of scans of both areas, a quick transfer between the head coil and the "blanket" thing (or whatever it's called! I must find out!) and no talking, it would probably take less than 20 minutes.

Kx

 

Just looked it up - apparently the "blanket thingy" is called a spine coil. Should have guessed that I suppose!

Kx

Hi Blod

I can so much relate to your situation. I've been in limbo over 5 years now, and my main problems are neuropathic pain (in my legs),  inability to walk far even with a stick, numbness & weakness in left leg, ankle foot & toes, & fatigue.

Because my LP was clear my Neuro referred me to another Consultant who specialises in chronic fatigue, and guess what, I've now got a diagnosis of CFS/ME!  Like you, I was referred for CBT & I've been attending a group CBT course for people with long-term health issues. It's been helpful with pacing, but not significantly helpful otherwise.

I'm still with my Neuro, and because my walking is deteriorating & pain increasing he's sent me for another MRI of the lumbar spine, so I'm just waiting to see if that shows anything.

The way you have been treated is awful 'though. Isn't it frustrating when they just give us a 'label' even though it just doesn't fit the situation.

I do hope you get to see your good GP sooner & then the help you need to see a better Neuro.

Take good care,

Bren x