The results are in ....

New diagnosis and before diagnosis
1

Hi all

For those who dont know i am undiagnosed 48 years old woman with symptoms for 9 years. First neuro was on a different planet and wiped me of the bottom of her sole so to speak !! Just had a round of tests with a second neuro, LP , full mri, bloods, memory testing, and have been back to get all results.

Neuropsychology found some specific areas of weakness, ie navigational, organisational and facial recognition skills to be very poor but general memory all average for age etc. the specific problems were not correlated to any neuro probs such as dementia and he was happy with me, saying I probably always had these specific things and they were not anything to worry about.

The mri showed degeneration throughout the cervical spine. LP clear. She didnt mention the bloods but assume they were clear.

So her conclusion is nothing is wrong. I was hopeful that the degeneration would be the cause of all my symptoms (had already had a letter telling me about it) and that the pressure would be off.

She obviously read the notes from my previous neuro who basically said i was the ‘worried well’ because she said ‘me and Miss McD…, we do the same thing you know.’ And she repeatedly said ‘you havent got/it isnt ms’. Well I never said it was, I only even mentioned it to Miss McD (the first one) when seeing her. I expected her to read the notes but not to be biased. silly me.

Anyhow she wants my gp to refer me to a general medical consultant to look into other avenues, ie bacterial infections such as Lymes Disease, and not to send me to another neuro! cheeky. Of course it may well be something like that so I will go and see whoever she recommends. But I don’t think she should be saying not to send me to another neuro. If my gp sees fit to in the future it is up to him!

Oh yes, and she wants him to refer me for counselling? and cognitive behaviour therapy? eh? I asked why counselling and she said ‘well, you’re crying now’!!! I was crying because after 9 years of symptoms I was hopeful for AT LEAST a point in the right direction, not more of ‘Theres nothing wrong’. And cbt … well who knows how that fits in LOL!!

Anyhow, so still got the same symptoms, and still got the same limbo. Now don’t have a neuro, just a label as a hypocondriac. Well I don’t actually want to be ill, I just want to know whats wrong.

Guess I’ll have wait til something makes the right buttons light up!!

Hope you’all ok

Cathy

2

My MRI showed the same on the spine and unless you have back pain I was given the impression that although the ‘degeneration’ sounds scary it can just be an incidental finding. If you are in pain CBT can help and would be useful. Have you got a list of blood tests that you have taken? It sounds like MRI and LP was clear so that by sending you back to general they are looking for causes that aren’t neurological rather than saying you are a hypochondriac.

3

hi Anonymous

I totally get what you’re saying its just I had such a bad experience with the first neuro i have no confidence in them. You are totally right in that they are looking for non neurological causes and I know I should be glad they are still looking. The cbt thing threw me because I had to do that with my son who has obsessive compulsive disorder and I can’t see how it would work but as I said i will persue every avenue that is recommended and go with whatever they say. Don’t know what blood tests she did. the degeneration has not been explained at all, and I was going to ask my gp about it.

I didnt mean to come across as some sort of drama queen about it all, I am just so frustrated, having had symptoms for so long and the first neuro really made me feel like a time waster so I guess I just automatically think they are all going to think I am a hypocondriac. I was just venting my frustration. sorry you feel you had to be anonymous to reply.

4

Just been reading up on Lyme Disease. this could be a possibility I think. tho i dont remember ever being bitten. it does apparently mimic many diseases including ms. time will tell.

5

I always post anonymously! I’m similar to you in that whilst I ‘currently don’t have ms’ as I have demylenation they are looking for other causes. The reason I asked which blood tests is because I have autoimmune hypothyroidism and it can have a huge impact on everything. I’d assume that they have tested for thyroid but they may not have looked at antibodies and also other autoimmune disorders. They are currently looking for more for me and lupus is one of them. You don’t have to do CBT but it may help you cope with everything and I’d go for that over counselling. They often recommend it for pain management. Be reassured that they are still looking and you can always get a second opinion once the blood test results are in x

6

Ps. I don’t think you’re being a drama queen! I was so upset at my last neurologist appointment with the way I was treated and told I’d have to wait a year. Then I developed sclerosis of the eye and saw an optholomologist in a day and a review in 3 weeks. Now the neurologist wants to see me next month.

7

Chelsea Girl

you aren’t being a drama queen. I had my 1st official episode last october though I believe I’d had signs of things at least 6 months before. I’ve had bloods, 2 mri (non-specific brain lesions) and emg. My neuro was terrible - doesn’t explain anything and just tells me get on with it and tells me I’m pessimistic. He thinks I’ve had a mild epsiode of spinal inflammation and I’m awaiting results for NMO blood test. He also threw in last time - are you a nervous patient… I just thought don’t you dare go down that route… if there’s anything I’m nervous about it’s my appointments with you because you don’t listen. I’m waiting to be reffered for a second opinion now and am not due to see my first neuro for another year pending the NMO blood tests which take 6 weeks.

I think you know yourself inside whether stress or anxiety could be giving you symptoms and for me I know something very real has happened. Don’t give up fighting for answers.

Reemz

x

8

thank you Anonymous for replying again. I do have an underactive thyroid but just normal hypothyroidism as far as I know and i take thyroxine at 100mg a day for it. What is autoimmune hypothyroidism? Should they test for that then? I am glad that they are still looking for me and I do hope to get to the bottom of it all. I have had my confidence knocked off the scale with this limbo stuff and non-understanding neuros! they have absolutely no people skills and dont think about the impact of all it on the patient. I hope your neurologist has something of value to say to you at your next appointment!

and thank you Reemz for your reply. i certainly do know that my symptoms are very real. And like you said, the anxiety comes on going to see the bl**dy neuros LOL! Hope you get some answers soon.

Cathy x

9

Mine levels go up and down as it is due to an autoimmune condition. When did you last get yours checked? Never underestimate how awful it can make you feel if your levels aren’t right. They tested me for thyroid antibodies and that is how I got the diagnosis and why they are looking for other autoimmune conditions. I already have raynauds.

10

Hi Chelsea Girl, I’m not sure what your symptoms are but if they are similar to Lyme it may well be worth looking at ME/CFS and Fibromyalgia. The symptoms are very similar to MS and there are quite a few of us on here with these diagnoses.

Hope you get some progress soon hun. I’ve been unwell for approx. 8 years and for 6 of those was told it was all in my head.

Hugs to you.

Mags :slight_smile: xx

11

Hi anonymous ~ my thyroid has been reasonably steady for a couple of years now, but I will get the GP to recheck it. Cheers x

Hi Auntimogs, my friends daughter has cfs and she thinks it is possible that I may have that. I am hopeful that the general med consultant will check for all these type of conditions. And yes, I know that feeling of being told it was all in your head!!

Cheers x