Limboland

New diagnosis and before diagnosis
1

Hi I need some advice, I was diagnosed last October with multiple sclerosis and that took a while to get that diagnosis a few months I had a EMG which was clear but the Mri had a few lesions on brain and a cord lesion, that diagnosis came from a neurologist, I then waited 3 more months after being diagnosed to see the specialist Ms Neurologist today thinking he would tell me what type of Ms I have and talk about possible treatments, I’m 35 I tend to have symptoms that come and go tingiling spasms, have had optic neuritis, which for last couple of months is lingering, and to my surprise he said some of my symptoms did not sound like ms and some did, he said to be honest he wants to redo my MRI and now do a lumber puncture, to be totally sure, is that a normal thing to do? I have been assured by a few people he’s a well known neurologist and very good at what he does, he said he would do a virtual clinic to give me those results but his next face to face appointment is 6 months away as he’s totally booked up, I’m sort of at my witts end this has been goin on for so long now, and I was told my a ms nurse I’d be crazy to look at finding another hospital as he’s very good, I said do you think I have ms he said probably and that he’ll wait to see result and see if I need medication or a wait and watch approach, what are my options do I just wait it out or look to go somewhere else where they could put me in limbo land too?

Thank you everyone X

2

Hello

Did the neurologist do a physical exam? You’ve not said and I think that question is the key to the answer.

If he did a physical exam then I suspect you can trust what he says. But if he’s going on your description of symptoms and the MRI you’ve had, then maybe put a bit less faith in him.

Having an LP and another MRI then a virtual appointment would be quite sensible if he’s done a complete exam and yet doubts the diagnosis. If as you say he’s an excellent neurologist, then actually you don’t have much to lose.

If you started at the beginning with a new neurologist, then you’d still perhaps be looking at a wait for an initial appointment, then perhaps another MRI and an LP plus a further wait for the results appointment.

I had a neurologist for several years and it only occurred to me after about 4 years that he had never done a physical exam. At all. Fair enough, I had a definite diagnosis and had been diagnosed a good few years before I saw him. My rehab specialist always does an exam. My new neurologist (who replaced the old neurologist when he left the hospital) is very keen on doing physical exams. Most are. But some aren’t, and when there’s a question of whether to seek another opinion, that would be the issue I would hone in on.

Sue

3

ive been going through a similar senario which my Doc, i still dont have a diagnosis though. i have 2 MRI’s on the Spine and Brain and recently LP and still none the wiser because the Brain MRI doesnt consist of MS but the spinal MRI does. 2 years ive been going through this poked and prodded and dont feel ive gotten anywhere, but my neuoroligist is supposed to be the best in the area

4

Hey thank you for your reply he did all the strength tests and sharp tests,eye tests made me walk to see my gait ,looked in my eyes ect, which all looked good, he wants me to do another. MRI lumber puncture and eye evoked test,oh gosh lol hope ur well X

5

Gosh you have really been through it too do they have any ideas what they think it could be?, I would love if they told me I did not have ms but I don’t know wht else it could be , do you feel you have ms? X

6

honestly ive got to that stage now where i havent got a clue anymore, ive completely lost faith in our so called health service, my gp and neuroligist still say its MS but at this time cant be 100% sure. 13 months now ive physically not been able to work now which is the real problem for me at the moment as ive worked my whole life, served this country and now the stress and depression is slowly starting to set in

7

It is really limboland. My neurologist did an exam he watched me walk over to him striding away with no problem but I didn’t know why I was there, he did mention Ms a couple of times.

Now I am waiting for my MRI appointment as I have had my lp last week my back is still stiff lol but no headache, as I have been on this site I have learnt a lot about the neurologists and that they are very busy.

I was seen very quickly at first as l didn’t know that I had been put forward by the eye people. I have now learnt as well that my double sight should have corrected it self but it hasn’t.

I have also learnt why the neurologist appointment is in April because he is very busy. One thing I have picked up is that you can phone up the doctors secretary to see if they have an earlier appointment. But for me this will be after the MRI which is all I am waiting for and it is very frustrating because I don’t know what I have. Yesterday I showed my mum my hand and fingers shaking she was very surprised she hadn’t noticed it before, you should have seen my nail polish that I put on it was all over the place it was bad yesterday. Anyway I hope it goes well for you.

Kay

8

I really know how you feel like you know something is wrong and you feel like you have been left, are you havin problems with mobility hang in there and try too keep strong I know how hard it is. X

9

Thank you for the reply alI I do is call the secretary, I feel like you I think it’s best to wait till my test dates come through the lumber puncture eye evoke test and second MRI, then badger the secretary, I have a bad feeling after this there going to say it’s not ms or like the doctor said a wait and see approach, part of me would love it not to be ms but then makes me tink what else could it be, I know how u feel with the shakey hands I had terrible tremors last year, I have been drinking turmeric like its going out of fashion supposed to be good for inflammation how long have you been having symptoms for? X

10

What part did he not think could be MS? Just curious as you mentioned everything most people have with MS.

My neuro told me this moons ago. I started my journey 2006 september. Over the years i had so many tests, my neuro said he was sure i had MS but i didnt conform to the NORM…? so it was throwing him off.

What is the NORM?

I believe it was my age that wasnt the NORM.

I went to see Dr Munro at Breakspear Clinic because i just wanted to find out what was wrong. It cost me a lot of money but i did it. She did the most extensive neuro test i have ever had to deal with. By the time she had finished i was exhausted and had to lie down. Literally. I remember she gave me a differential diagnosis of MS at the time with other tests. She encouraged me to go back to neuro. She wrote to him I know that.

Well over the years and 2 positive VEP tests, lesions in different areas of my spine etc, my NOT THE NORM MS, become PPMS.

He actually admitted to me that my case he had learnt a lot about how MS can present itself differently and was then questioning if some of his diagnosis of MS was correct lol.

NOT one person has MS the same. They say its a snow flake disease. Yes its usual for it to start early in life, BUT PPMS is actually one that turns up later.

All i know is i was classic. 2000 went blind twice, the GP at time ignored that little gem lol, yet hey on the T.V. Home and Away one of the people on there who had to act out an MS first scene, went BLIND. She got diagnosed within weeks i know its a T.V. show but made me giggle. If only it was that easy.

I talk to people in the states on a group who have MS, and boy they are treated so much quicker and more seriously then we are in this country. They get taken into hospital with relapses, and cared for so much better. I know friends in UK who have RRMS and have a relapse and have to look after themselves.

we are way behind i think in this country for diagnosis of MS and other diseases.

16 years, 10 of which it took back and forth, to get told from nothing i had PPMS.

all because i didnt follow the Norm… it reminds me of the scene in CHEERS…norm lol…sorry having a funny five minutes this morning.

Just for a giggle.

11

cant go for walks anymore, can just about make it to garden, struggle with stairs etc cant stand up too long i used to be able to walk over 5 miles a night in my job

12

Thank you for your reply Gosh the eye sight thing is so scary, how are you doing now, may I ask when did you start having problems with ur mobility? And when you had eye issues How long did it take to clear up, some people are so lucky with ms and never has eye issues, he didn’t really say what symptoms didn’t sound like ms I just said vision issues headaches, numbness, that is my fear they are very very slow here and they leave things to progress that is my fear, How r u coping? X

13

I have had eye issues on and off since i got sick 2000. My mobility was ok until 2006 when i woke up and could barely walk. My decline has been gradual with mobility.

I know i have had ON several times. I have only ever gone blind the twice, the other times it has been pain in eye movement, weird flashing and poor side view. It always gets worse when i am hot or stressed.

I went to see my doctor last year over it again and she had no clue. I saw my MS nurse who did a colour chart test and it turned out I was having an ON attack. the nurse said if i had been seen earlier i could have had steroids. the overall affect usually lasts about 12 months.

i have had 2 positive vep tests, one in 2007 and the last one in 2016 october.

I have PPMS.

14

Honestly if I could somehow get the money and go private I would but I Can imagine even if I was eligible for treatment it would cost a bomb and I don’t even know if private handle DMD’s or if it’s just NHS that have the right to prescribe DMD’s, I’m the same if I get stressed or hot I knowticed my eye sight goes off, and the nurses will not give me steroids Limboland really sucks.