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Help guys limbo and struggling

Hi guys been on here before but still having issues
basically started with

December - lhermittes that has pretty much gone away, then constant hand tingling that is now rarely there,

feb - left foot then right foot tingling then burning, now only left foot on and off

march - arm aching only right side with pinching pains in legs

april - legs go very stuff when starting to walk, calfs sometimes, then thighs, then hamstrings along with burning thighs on and off

may - arms pains biceps and then they ache and get heavy painful from neck down to hands

Ive had three neuro exams all normal except for lhermittes

mri of brain in jan and April nornal
mri of cervical spine feb and April normal
mri of full spine may normal

lumbar punxture may normal

now my neuro is saying he doesn’t think Ms but can’t rule it out, the second opinion neuro says not Ms, had an emg and the chap said not Ms it’s almost too all over and aggressive for ms

what do I do next? Could it be Ms but not show yet? If it’s ms would it be ppms or RRMS?

im a 30 year old man previously healthy, had a sinus infection before all this, one neuro even suggested a post viral issue

this week we’ve been away on holidays, been walking miles, riding bikes and had slight pains and stiffnrss again in the legs, but started having the urge to use the loo almost all the time too, I’m really struggling with this, I love my family and I am genuinley the happiest guy in the world before all this started, I want to be normal for my family but all this is getting worse

Hi Kris I don’t have a diagnosis either but haven’t seen a neuro yet either. I can’t give you any answers either but just to say we all feel that we want to be normal for our families and this not knowing what is wrong is very stressful. You didn’t say if you have any further appointments with neruo because you could put him on the spot by directly asking for a diagnosis. A simple answer to the loo thing is get checked by your GP could be an infection. It maybe a good idea to have a talk toyour GP anyway counselling may help with how you feel it’s not for everyone and I have to say I was against trying it as I’d had a bad experience in the past but have found it helpful to be honest I’d reach a place where I would try anything. Good luck and hang on in there it isn’t a smooth ride to a diagnosis.Sue

Hi Kris

I am wondering if you could be referred to a health psychologist to help you with these worries?

Kat

p.s i have exactly the same symptoms as you and this was mentioned to me by my counsellor.

I’m waiting on that but I can’t believe for a second that this is all in my heas

lm Anxious definstelty but it’s only because of all the symptoms

Hi Kris,

I feel for you. How have you doctors left it with you ? Your symptoms are mainly sensory.It could be Peripheral neuropathy and simple blood disorders can cause this like hypothyrism and B12 defiency. Both of those can cause l’hermittes. The thing with B12 is that some people can be defiecient evenif there levels are in the normal range. Go on the the pernicious aneamia website/forum and you will see people on there who thought they had MS but had clear scans. A Guy called Martyn Hooper has written good books on the subject. There is another book called “Could it be B12?” and in that they claim that the boundaries for the test are not correct. They even suggest that people with unexplained neuro symptoms should be given an intense trial of B12 to see if it works. Also on the subject people go to a doctor in Wales to get a pure form of B12 to inject daily and they find that only with this are they free on symptoms.

Moyna x

Hi Moyna

​thanks so much for the detailed reply, it would be great if neuros cared so much. Your right in saying most of my symptoms are sensory, the motor ones are the tigjtness and muscle pains in my legs, but they come and go. Saying that most of my issues come and go on different days at different degrees, I can have hours when I feel completely normal, it’s really odd.

ive had b12 tested and was 349 and then 420 I think, vit d was 110, my thyroid level was right at the bottom borderline below normal range, so I think they’re retesting that.

The docs have said to go back in six months, to see how I am but I worry where I’ll be then. I can’t shake the feeling it’s Ms even if it is odd in it’s presentation so far

Hi Kris,

The fact that your symptoms change place from day to day MS would be unlikely - more likely thyroid or B12. Get the book “Could it be B12” as even with your blood results your symptoms sound far closer to that than MS. I really think that you have got this idea of MS in your head and cant shake it off.

Moyna

Hi Moyna

your right

i can remember the exact moment I read that lhermittes is often caused by Ms and I fell apart since then. I’m hoping and praying your right and thank you again for answering and thinking of me, I genuinely really appreciate it.

They tend to be in the same places but change in severity most days, but keeps adding new sumptoms. I had read about something called intrinsic factor where people can’t absorb b12. From an outsider it doesnt present as Ms would I agree

thanks again

kris