Help advice so many problems already

[Krispt]

Hi guys
Just a quick background
I'm 30 yrs old, ive had so many symptoms and issues that it's scaring me in a big way
December - Lhermittes - went away feb to barely noticeable
January - hand tingl, feet tingle
Feb - feet started burning, brought a weird achey arm and odd pains in leg muscles all over both legs
March - much of the same
April - the odd feeling moved to left arm too

In the past two days both legs have had muscle pains and aches from my hamstrings to thighs that sometimes burn and up to buttocks and private areas. I've been struggling to walk any distance as my legs get real stiff and heavy and ache on the insides

I've ask had the fasculations in eyelids arms legs everywhere randomly.

Now I know that all seems like loads and that's what scares me?' I had an mri in jan clear brain and c spine and two neuro exams jan and feb all normal.

I'm terrified at how quickly the symptoms have come on including the spasticity whijc I was told should be later in disease, does this sound like a relapse? Or very aggressive ppms or something entirely different! It's terifying me and I would love some advice

Sorry for the rambling and questions let me know

[supermum_ms]

I honestly do not know what else to say to you that hasn't already been said.......

a) YOU self diagnose and gave your self EDSS of 3
b) YOU believe wide spread subjective sensory symptoms = MS
c) YOU believe you have a progressive variant of MS
d) YOU misinterpret or ignore factual information given
e) YOU said "my neuro....is currently dismissing a lot of what I'm telling him as anxiety."
f)  YOU said "I initially thought the clear mri was good but then I turned that into a bad thing meaning it's only just started and is this bad already? Crazy huh?"
g) YOU said "I know I'm catastrophising"

As i said above......"In your own words, your neurological assessments have not been abnormal, and even though you are convinced you are progressing at a rapid rate, your neurologist only the other day found no evidence of a relapse, said it doesn't look like progressive and that there's a lot of paroxysmal symptoms with no fixed deficit.......which basically means your neurologist didn't actually find the abnormal physical results that would support what you believe is happening to you. "  

"Kurtzke Expanded Disability Status Scale (EDSS)

3.0 - Moderate disability in one FS (one FS grade 3, others 0 or 1) or mild disability in three or four FS (three or four FS grade 2, others 0 or 1) though fully ambulatory.

3.5 - Fully ambulatory but with moderate disability in one FS (one grade 3) and one or two FS grade 2; or two FS grade 3 (others 0 or 1) or five grade 2 (others 0 or 1). "

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/10-2-3-29-EDSS_Form.pdf

You may not wish to believe it but your OCD behaviours regarding your health, would actually explain how your subjective sensory symptoms have escalated so fast and why there's not the objective physical proof of progression, how you can obsessively believe your becoming disastrously disabled and why there's not any physical proof of progression, how you can't accept diagnosing your self isn't proof of your progression, how your thoughts keep spinning back to having a progressive MS variant no matter what is explained to you.......

I would advice you to look back on everything you've written and see for your self how 'consistent' your words are with a Mental health causation and how inconsistent your words are to a neurological condition like MS and hopefully you will recognise how self fulfilling your obsessional behaviour is.

Good luck...........JJ

PS For a moment, just a moment please consider what situation the people you are talking to might actually be living with.........perspective is an amazing reality check sometimes!

[karryon55]

That's no problem. I have not said in any shape or form that you are not suffering from the symptoms you describe but as others have suggested before me you give the impression that your anxiety is making things worse which will happen to anyone.

I just hope you understand that taking care of your mental health takes some responsibility on your own part. I have been there done that and it can sometimes be hard to step back and think I need help.

When I was struggling a good person on this forum pointed out that I may be depressed and to speak to my doctor about it. I really hadn't seen it in myself until she mentioned it to me but I'm so grateful she did because I have felt so much better in the last 10 months since taking an antidepressant.

It's not until you get rid of that horrid feeling that you can actually see properly. It's hard for me to explain really. I do know that if you can control the anxiety somewhat then you will be able to measure your underlying symptoms more accurately.

There have been more than a few people who I have helped with anxiety on this forum through pm so please believe me that I do care and do understand. I just thought I would take a different approach with you as the others had not got through to you. This community is a good one and we genuinely only want to help others.

Take care,

Karry.

[Krispt]

Ok I apologise it wasn't meant in a confrontational manner
I appreciate your views and I realise you guys have Ms so I have the utmost respect for you all and how you deal with it
I know you can't all be wrong with regards to the anxiety
I also know that anxiety can make it worse so it needs to be tempered either way
Again I did not want to offend you I am only looking for advice as I'm in the worst position of my life and this speed is terrifiying

[karryon55]

I'm not sure what I need to be careful of as I have not said anything untoward. Please be respectful when saying things like this.

You do realise this forum has no doctors so it's only patients living with MS here. If you would like some help with your anxiety then maybe a visit to that community would benefit.

So did your Neurologist diagnose L'hermittes? You still don't seem to be answering things directly with saying you later found out what Lhermitte's was.

I am entitled to my opinion of course and I very much agree with others like JJ and Ess on this matter. Please don't suggest how understanding I should be of your situation when you know nothing about me as I only know of you what you have written. Have you not thought that what I have said is to try and help you...to try to get you to take a step back?

Many who know me from this site know that I am a caring person and I do my best to provide my time and support to others as they have for me. I read your post and responses time and time again and I can only see one thing I'm sorry...you are not listening.

I don't know what's going on with you and I don't have to be careful thank you as once you enter into a forum without any doctors well you will get a lay persons opinion which is what I have given.

[Krispt]

Hi
I completely understand your stance and form an outsiders viewpoint I can completely see why you would dismiss all my issues
However i find it utterly horrible given the position im in that you think I'm making any of this up! It is real these things are painful the lhwrmittes was 100%! Real
I went to the gp thinking injury from football or car accident and only found out later what lhermittes was!
I get completely why you are annoyed and as stated I appreciate what everyone is saying, but I think you need to be careful as you have no idea what's going on
The edss yes I have read about it and given myself an estimate based on the neuro pages etc whijc yes is not right i know
As someone who suffers from anxiety plus other thigs I would imagine you to be far more understanding than you are
Again your entitled to your opinion but I disagree
I am in pain I am struggling and your attitude doesn't belp

[karryon55]

Life is too short to be wasting it on googling your symptoms and worrying about something you don't have. No I'm not a doctor but I am wise enough to know what is going on here.

I have just spent time in the intensive care unit in hospital so I truly know how short life is and when I came across your post and responses from many of our valued community here it has sort of irritateted me to see you agreeing with what people say but then immediately resort back to your "target being MS" which I'm pretty sure you don't have if you have clean MRI's and other tests.

You have thus far not had any abnormal tests and you have self diagnosed things like L'hermitt's and convinced yourself that your brisk/normal reflexes are abnormal. I hate to inform you but brisk/normal reflexes are found in highly anxious people and is a completely normal phenomenum.

I may sound harsh which is totally unlike my nature but I think you need to take a good long look at yourself and your behaviour here. The people responding to your posts have MS and spend their time trying to help others on this site. I feel you are feeding off the feedback you are getting here and causing yourself all these symptoms. Anxiety can cause the symptoms you describe.

The Lhermitte's was discovered by your googling and much of what you have said has not been mentioned by any doctor rather your own googling. I could never imagine any Neuro suggesting MS CIS or any other neurological condition without ANY supporting evidence to point in that direction.

Please consider that when reading your comments you have so far managed to avoid answering direct questions asking you things like "how you got your EDSS score" because you know that you have researched that and given yourself an EDSS. This is not safe practice and you are working yourself up into a frenzy about nothing. I honestly don't believe a lot of what you have written because it hasn't come from a doctor rather from googling and subsequent self dx.

I have to say from my personal perspective I find it a little upsetting that you continue to pursue this community until you have seen your "neurologists" (pleural) because you already have a second opinion before you have got your first. I'm sorry if anyone including yourself is offended by this but I am past caring to worry what others think to be honest.

I have suffered anxiety/depression and I have sought treatment for this just as I have with my other conditions. I have compassion for people who suffer anxiety but I also am a believer that we are all responsible for our own mental health and when there's a problem seek medical advice (which should always be done in person not online).

Life is too short. Enjoy your life and be grateful for seeing the sun rise and set. Get some help to control your anxiety. There is so much to live, love and laugh at in life so please don't lose sight of it.

Take care,

Karry.

[Krispt]

Ess
Thabkyou I didn't realise
I've got tablets for it called sertraline I'm also seeing a psychologist one I used for years on a professional level so she knows me all over
I appreciate what your all saying I do and I sort of get to grips with it then something else will happen or a symptom will get worse it' knocks me backwards
I've done so much reading on it all that i know this is a strange presentation for Ms but it's what's happening and I know some people do have fast progression

[essdipity]

Although I do sympathize, I stand by my answer. What are you doing to treat your OCD anxiety?

By the way, your profile lists you as female, but you can change that easily using its 'edit' function.

ess

[Krispt]

Ess you are spot on and I do appreciate it
I am a man by the way and usually a confident self employed man
However this has reduced me to being a mess
I know Ms shouldn't be as quick as this adding new symptoms all the time, but whatever it is, with me it is that way
I had a new mri friday and I have a follow up with my neuro should it be needed, along with a second opinion next week so I can't do anymore I huess
I think it's the not knowing and the prognosis etc that I'm struggling with onviously coupled with the extreme anxiety, I know there's no way of knowing but I've read the prognosis factors etc 3 systems at onset male progressive etc. I've convinced myself it'll be bad for me
But I do know what your saying and I can see how guys would be getting annoyed by me, I'm really sorry for all the q's but you guys are all that's keeping me slightly sane right now

[essdipity]

You have reassigned yourself an edss score, have re-diagnosed carpal  tunnel (which by the way is not part of the central nervous system and thus not MS), you have diagnosed spasticity, etc., etc. All done by you, none by a doctor.

You are very polite, and I'm sure, quite a nice woman. You thank people for their comments, and follow that with 'Yes, but------.' To me that means you are ignoring everything you don't want to hear so as to pursue your own agenda. All the while you concede you have runaway OCD anxiety regarding your health. Why can't you understand that you are making things much worse for yourself when you go round and round with these fears?

No matter what else may be happening with you, you need immediate help with the anxiety issues. You simply cannot live that way, or at least I couldn't, nor could anyone I know. Why are you not making this front and center, your first priority? If you have MS, which is highly doubtful, it will wait, believe me. No one's symptoms take on new body parts every day, the way you describe it. Your brain and spine would have to be loaded with lesions, and I gather you have none.

But do you even have an appointment with a neurologist? Do you have new MRIs scheduled? When?

I feel so strongly about this that will not be responding further to you until you've seen a doctor and have had further MRIs. And until you've taken important steps to manage your anxiety. My answering this way is no big deal, I know, and others here may feel and act differently. But I believe that any further response from me would simply mean I was aiding and abetting your severe, even crippling, anxiety.

I send best wishes and hopes that you get help.

ess

[Krispt]

I know you guys all think this is anxiety etc and it cannot present like this
But it is looking increasingly lore likely, the leg sympotks are worse the arms are worse now too and there is no sign of it letting up
I don't have the time to just see how it progresses, if the previous four months are anything to go by
Does the orogressive variants ever have a levelling off or slowing down? This is now gettin ridiculous

[Krispt]

Hi Barbb
Thabkyou for that I know what you mean and you are correct
It's difficult because a lot of it is subjective
Today Its got to issues with both arms, aching numb weakness from the shoulder down the arm to the hand! Is this normal in Ms?
Some of the sympotks I know are Ms like but it's terrifying me at the rate they're are worsening and adding to others, it was only right arm it's now both and both legs

[bbassel]

I don't know who keeps 'telling' you these things. I know for a fact that the medical technicians aren't allowed to disclose their private thoughts to a patient. For just this reason exactly! Until a doctor or radiologist looks over the test themselves.

There is a reason they have this rule to keep patients from stressing about potential wrong information.

Just try and take some deep breaths. Working yourself up will only make your situation worse.

Alll the best

Barbb

[Krispt]

And regarding the lhermittes
It was the neuro who said although he can't feel it, it is there based on the explanation. It wasn't so bad then after a week it got really painful lasted about 2 months then just disappeared.
The arm issues have slowly gotten worse too, and I wake up most nights with my fingers in a carpal tunnel distribution tingking and numb
It was also the edss score thing that concerned me, to have issues with walking already would put me at Edss 3 plus and to have that level already is not good I'm told
Thanks again guys I really appreciate it all and knowing othee people's opinions really does help

[Krispt]

Hi doublevision
Thabkyou, I'd be interested to know where the lhermittes less aggressive link comes from? I thought being that it's a spinal lesion it would not be so good? I also know sensory symtpoms are usually better prognoais. It is however the issue with the legs tightening and pains that is concerning me the most currently regarding prognosis etc
I hear of people say it took years to find out etc but already I'm having issues with walking some days and the leg pain is in both legs, mostly hamstrings and more the left but in both legs from calfs up, almost like cramp

[supermum_ms]

Chari is actually one of the mimics though often dismissed for some reason, we've had a few people in the community who were eventually dx with it and medhelp has a Chari community now, but even though i've mentioned it i'm still concerned that with your high anxiety, it really isn't a good idea to inadvertently encourage anything that feeds your anxiety even more.....

Is the Lhermitte's something you self diagnosed like the spasticity and your EDSS scores?

I honestly didn't overlook that you'd mentioned Lhermitte's but with what you've additionally mentioned in regards to self diagnosing, catastrophising, progression etc and that Lhermitte's is based from a 'patients complaints' of paresthesia or an electric shock-like sensation that radiates down with flexing the neck.........and the potential for someone with OCD mental health history to experience functional sensory symptoms, as sensory symptoms are commonly associated there is enough background information to consider the Lhermitte's as similarly related......  

This is a respectful explanation of what basically happens with anxiety and worrying about MS, worth reading imho
http://www.anxietyzone.com/index.php?topic=9832.0

Cheers.........JJ

[doublevision1]

IF your Lhermitte's really is due to MS, but all the neurological testing so far has been clear, this would actually indicate being very early in disease course, not progressive as you fear. It was my first symptom and my neuro exams and MRIs were clear for a year before any objective evidence of MS was identified. Although there's no way to predict which disease course any one individual will have, Lhermitte's as a presenting symptom is associated in general with a less aggressive disease course. I'll try to find my reference for that. I do agree with JJ and Ess that you really shouldn't be jumping the gun on this and would benefit from finding ways to manage the stress of your health concerns. However I do not think that your experience of Lhermitte's could be evoked by OCD or stress; perhaps magnified, but not caused by. I believe there must be a physical explanation for this which will eventually be revealed.  I understand why MS would be a concern for you but until you do learn via objective medical testing why this is occurring, do what you can to manage the anxiety, as it is really detrimental to your overall health and well being.

[Krispt]

I genuinely know what your All saying I do and I know the obsessive compulsive bit isn't helpn I also know it shouldn't present like this especially at my age with normal neuro and mri so far, not sure on the latest one yet
But I can't help think there's nit alot else that matches
Mainly because of the lhermittes, I'll be honest though I didn't realise there was as many mimics as that!
The only other ything being mentioned at all and thtis was by the lady who did the mri, was chiari? She thinks she saw it on the scan but it wasn't reported, But thn even that wouldn't explain all this?
Lhermittes is the main one that pushed me towards ms

[supermum_ms]

You keep repeating that you understand completely but at the same time continue to have difficulty comprehending, you absolutely need to have some abnormal neurological diagnostic evidence, in order for you to actually have a neurological condition like MS!  

In your own words, your neurological assessments have not been abnormal, and even though you are convinced you are progressing at a rapid rate, your neurologist only the other day found no evidence of a relapse, said it doesn't look like progressive and that there's a lot of paroxysmal symptoms with no fixed deficit.......which basically means your neurologist didn't actually find the abnormal physical results that would support what you believe is happening to you.  

If i am understanding your logic, you seem to have in your mind that your consistently normal neurological assessments over the last 3 months, isn't significant diagnostic evidence, that there hasn't been the progression you believe. You continue to assume the rapid symptom escalation is more significant evidence of your progressing neurological decline, whilst ignoring the fact you still have neurologically normal test results.

This publication table 7 lists 100 medical conditions that are sometimes mistaken for MS, and has basic explanations and diagnostic evidence for each https://neurology.wisc.edu/publications/2007/Neuro_2.pdf

It may not be pleasant to think about but considering you already have OCD, one alternative explanation for what you are experiencing is 'possibly' the OCD , which may have become obsessionally focused on your health, if so that would open the door to a potential health anxiety, conversion disorder etc to explain why you experience what you do.    

Think about it.....if days ago every single symptom you'd mentioned was not able to be backed up by any corresponding neurological abnormality, how could you have a progressive type of MS or even be progressing, if there simply wasn't the measurable evidence to support that you have declined?

I honestly believe you are not helping your self by continuing to jump to these types of conclusions, please consider you are unnecessarily causing your self too much anxiety trying to predict what 'might be' going on.......breath!

More food for thought...........JJ

[essdipity]

But you keep fixating on MS and what variety it is. That is not helping at all. If you want to stop being so anxious, you need to stop 'feeding' it by these thoughts. Instead, see a therapist and possibly get on a medication. Those are positive steps to help yourself. This isn't helping at all.

ess

[Krispt]

Hi Jj
Again Thankyou for taking your time to answer this and I really appreciate it
I understand completely what your saying and as I said before, to me it doesn't look like Ms at times, but what else could cause all these fast occurring sumptoms?
Lhermittes I know can only be a small number of things? B12 level was 350, the other things structural are clear
Lyme cannot cause lhermittes
And then there's the leg cramps and tigjtness constantly along with both arms numb? I understand completely what your saying but what else can it be that's causing this?
I know it's anxiety that's making me stress but it's because of how its playing out, it's getting worse and I have people I need to take care of, having Ms and sitting by is not going to help me

[supermum_ms]

It's absolutely 100% illogical to me, that a neuro from Barts London or any neuro to be honest, would actually suggest or even briefly mention to his or her patients, the rarest of the rare forms of MS at someone's first appointment!

On top of the oddity of that happening; IF the suggestion of PRMS or Malignant Multiple Sclerosis -Marburg Variant (the only other type of progressive that has a rapid pattern and even rarer still), was actually being made to someone sight unseen 'and or' who doesn't actually have a pre-existing diagnosis of PPMS or any form of MS, 'and or' doesn't have the abnormal objective diagnostic evidence (clinical, MRI's, LP, VEP etc) consistent with a neurological causation etc............the suggestion would be totally irrelevant, as it is a suggestion contradicting medical science and devoid of the persons reality!      

"Progressive Relapsing Multiple Sclerosis (PRMS)
Progressive Relapsing Multiple Sclerosis (PRMS) is a rarer form of multiple sclerosis where the disease takes a progressive form from the outset with acute attacks throughout and no relief from accumulated symptoms.
Unlike Primary Progressive Multiple Sclerosis, Progressive Relapsing MS does not ‘plateau’.

Malignant Multiple Sclerosis (Marburg Variant)
Malignant Multiple Sclerosis, also known as Marburg Variant Multiple Sclerosis, is a particularly aggressive form of the disease. Thankfully very rare, this highly aggressive form is defined by its swift and relentless decline to significant disability or even death, often within a few weeks or months after the onset of the initial attack."
http://alaskamscenter.org/?page_id=4

Krispt i'm genuinely not dismissive of your fears, but the other side of the equation that challenges your mindset and should be considered when you put your entire situation and objective medical evidence all together.......you actually have nothing to back up your fear that you have one of the rarest types of MS!

Your lack of neurological diagnostic evidence, symptom patterns etc are hitting all the neurological red flags, which more 'commonly' suggests the causation is not a neurological condition like MS.....it really doesn't make sense to incorrectly assume non specific symptoms are more significantly meaningful, than the diagnostic evidence consistent with the disease?  

Think about this objectively for a moment; by believing that the lack of diagnostic evidence must add up to you having the rarest type of rapidly progressive MS, is more likely only serving to feed your current escalating focused anxiety........seriously the more logical mindset is that by not having the diagnostic evidence, an inconsistent symptom pattern, no neurological deficits etc its all adding up to it being something not rare and being something other than your worst fears......    

Food for thought..........JJ

[Krispt]

Hi Alex
Your right and IVE started to get treatment for the anxiety so I'm hoping that will help out
And Jj I agree completely with what your saying it doesn't seem to follow ppms or RRMS that's why I'm worried about it
I have spoken to a neuro at Barts London too who suggested rapidly progressive or prms? Either way it's not good

[HVAC]

When I was being diagnosed my GP told me to step back and not think about MS for awhile. She saw that it was making me nuts.

Alex