PPMS

[Krispt]

Hi guys
I know you have all helped so far
I wondered if you could help with this
I wonder if anyone with ppms can tell me if sumptoms go away at all
I've had lhermittes that remitted, some hand tingking that remitted along with four burning that has lessened
But the spasticity in legs has got worse slowly it's bad somedays and not so others
There's also more twitches in muscles etc all over

[Krispt]

Hi Alex

Thankyou seriously it is really appreciated
I thought the same that somethting would show up somewhere, my worry has been how much has happened in four months, but then currently at least from the outside I look completely normal
I've also not tried any pain meds yet which I think I'll start asap

[HVAC]

If you had aggressive PPMS there would be plenty of evidence to support it. Your MRIs and LP would show it. I had lesions in the ventricles and the brain stem on my first MRI. My neurological exams have been abnormal from the get go. For the LP I had 12 obands in my CSF and none in my blood. My VEP was abnormal. A neuro opthalmologist said I had MS. I had a high ANA but tested negative for Lupus.I would put the PPMS out of your mind.

You have a fiance and a child. That is cool.

Alex

[Krispt]

Hi super mum
Thankyou again you seriously talk a lot of sense and I appreciate everything you say

[supermum_ms]

It's 2am over in OZ and i should not be awake alass i am.......but seriously "tight stiff legs" could be the understandable outcome of someone who has been spending an enormous amount of time sitting down or being inactive!
\
I is a huge leap into unbelievable territory, your mindset takes you beyond rational thought and you just keep feeding it by being online looking stuff up and posting all over the place..........you need to get off line before you drive your self over the edge with this behaviour, i'm serious you need to be bold and say enough i'm not doing this any more!

[Krispt]

Hi Jj
When I said Ms forum i didn't mean this one I apolgise
And yes it's spellcheck on this crappy phone that leaves words out etc and makes it all read a bit daft sorry
I've got the LP results next month and like I said the neuro radiologist looking at the scans next week so I guess I've got to wait until then
I appreciate your help and advice I really do,I know I'm doing my families head in so I try not to ask them too much
There is enough to say not Ms or at least not all that. Also I know I should be happy about the clear mris but all I keep thinking is its early and really aggressive so no lesions means ppms? It's itrational to a certain extent I know
Without the leg issues I wouldn't be so worried and rushed with it all, but i have read medical documents stating the tight stiff legs is a more progressive symptom, that and the fact it's in all leg muscles on and off worries me. But then the opposite would be its more likely a relapse and it's only been 4 weeks since that started
As you can see from this I am really up and down with it all

[supermum_ms]

I'm sorry you are unhappy with my choice of wording but YOU said...."a lot on the Ms forum say it looks too much and almost systemic " and that is definitely a "misleading statement" by it's definition.

You misrepresented the MS community by stating elsewhere something that was not actually stated or implied etc by the community.....if you look through everything posted, you will realise the only person to use the medical term systemic anywhere was actually you.

DO NOT GET ME WRONG I genuinely don't believe you are being misleading on purpose, but what i noticed throughout your posts, is that you have demonstrated having difficulty with comprehension, your interpretations of some of my posts were way off.

Your OCD could be effecting your ability to form a rational interpretation on what you hear and read, it absolutely does happen with mental health issues in it's extreme. It could explain why you post the way you do.....    

I totally understand I really truly do...........your anxiety is creating the worst possible situation you can think of and it's terrifying you, please keep reminding your self that there isn't any evidence to support your dooming thoughts, anxiety is a beast of epic proportions and you need to get real about it and do something about it NOW!

Hugs..........JJ

[Krispt]

Hi Alex your an amazingly atrong woman I don't know how you do it? I've fallen apart ove this, I always visioned this life and it seems like it might not happen it's terdifying me

And thanks for the opinion regarding anxiety, it's well known I struggle in a big way with it all so any suggestion is appreciated

Genuinley Jj I didn't mean to upset anyone and certainly am not misleading anyone, the first bit of the post should read the second opinion neuro thinks it's a neck issue, the original neuro who did my LP yesterday disagreed
The second opinion guy is givijg all my scans to a neuro radiologist Wednesday next week to check

[idntknow]

I been kinda following this thread a couple days now and well... I have a couple of suggestions that may help you with the issues but are not harmful to you if they don't.

For the burning feet, try using compression socks, it could be a circulation issue. and for the other issues I would highly suggest doing yoga or finding a good massage polar and work the stress out of your muscles.


You are stressing your self out. Stress is a dangerous thing in that it can cause:

•Low energy
•Headaches
•Upset stomach, including diarrhea, constipation, and nausea
•Aches, pains, and tense muscles
•Chest pain and rapid heartbeat
•Insomnia
•Frequent colds and infections
•Loss of sexual desire and/or ability
•Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
•Dry mouth and difficulty swallowing
•Clenched jaw and grinding teeth

[HVAC]

Whatever is happening is scary for you because it is unknown. I feel for you.Mindfulness mediation has changed my life especially a book called "Full catastrophe living". I live with both PPMS and stage 4 cancer. I have chemo all the time. I am very happy even though my life span is limited. My husband and I enjoy each other as much as we can and do not think about the future.  I have found worrying is trying to control the future and I can't. Most of what I worry about never comes to pass. I have to have things to look forward to in the future. A bucket list. I have been in a hot air balloon, seen wild ponies, and ridden a Icelandic Horse. Most of what mindfulness is has to do with breathing and being aware of it. It is pretty easy to learn.

Alex

[Krispt]

Hi JJ
Please don't accuse me of misleading anyone?!
I said the second opinion neuro was of the opinion that the spinal issues could cause all the leg hand neck issues but that it was not an operable issue
When I then saw my originals neuro yesterday who did the spinal tap he said he disagreed with that neuro and that the disc problems aren't signifixant enough to cause my issues
I apologise if that was misleading
I was over the moon when we thought we had an answer to allthekssues but the original neuro dismissed this completely
He also doesn't understand the leg issues and states the cervical disc could not cause this nor the burning in feet etc
I asked on the spinal forum before I saw him yesterday
I am sorry i really am if you think imisleading anyone, I am in a horrible place becaue of what's going on and how quick it is happening, I look at my son and my fiancé and it terrifies me that I may not be here for them it is truly breaking me apart believe me

[supermum_ms]

I actually find it impossible to believe a neurologist would specifically mention 'stiff person syndrome' or would even considered testing for the rarest of the rare neurological conditions (rarer still in males), in someone with zero clinically abnormal neurological findings, inconsistent symptoms behaviours and without an existing diagnosis of any of the associated medical conditions etc.

In all the years with thousands and thousands of posts, only one other person has mentioned 'stiff man's syndrome' and that wonderful lady had diagnostic evidence, clinically abnormal neurological findings, some suggestive symptom pattern, without a clear picture of which neurological condition was the causation etc and 'stiff man's syndrome' wasn't what she ended up being diagnosed with..........in your situation 'stiff man's syndrome' makes absolutely no sense what so ever imho.

It might of made sense that a neuro would be of the opinion that minor bulging discs are not significant enough to explain what you describe experiencing........if not for you hours ago also stating the 'opposite' in the spinal cord community:

a) "The neuro today said the cervical issues could cause Leg issues etc
b) He showed me an image of the cord and the protrusion and said its an odd protrusion in that it's not one sided it's across the Middle of the cord
c) two of them are bulging into the cord and on cord signal scans they protrude into the centre of the cord quite a lot which he said was odd. "

You have seriously lost rational credibility in my eyes after reading everything you've posted on medhelp, you are stating misleading, inaccurate, conflicting or opposite, condition related/suggestive statements etc in all the different communities you have posted in..........after reading what you stated in the Lyme community "a lot on the Ms forum say it looks too much and almost systemic " I honestly am questioning your minds ability to tell the difference between actual statements and what would be fictionalised by your subsequent anxiety feeding interpretations...  

The pink elephant in your room would still be your classic health anxiety signs and OCD behaviours, which would be the more common and most likely consideration because it would easily explain what you describe experiencing!  

I personally can not is good conscience continue to try to be of help to you, when i strongly believe, it would be detrimental to your mental health to do so.....

Calm.........JJ

[Krispt]

Had my Lp earlier which he did sitting up and told me lying down doesn't help by the way?
With my original neuro, i told him that the second opinion neuro said it was because of the neck issues, he said I disagree, the neck issues aren't big enough, and did more blood tests for stiff persons and other things?
I don't know what to make of all this now!

[Krispt]

Hi thanks again both
And yes Jj I recognise the thought patterns your talking about
The anxiety is always worse in the morning too, when I first wake up I isually feel ok no sympotms at all and then they all start coming on, again sometimes in the day I have no symptoms and feel completely normal and like I have my life back
Then I'll get the cramp pains in legs or arm twitch or arm pain
The only thing that's almlst constant is foot burning in left foot
But yes I know the thoughts make it worse as when jm busy I can at least take my mind off it a bit

[supermum_ms]

You  are more likely correct about your structural issues (bulging discs) not causing ALL your symptoms, as is very common with health anxiety.....the original symptom(s) were probably caused by the bulging discs BUT due to you having OCD, it was enough of a trigger to set off your OCD behaviours and hyper focus your obsessive mindset on to MS.....

Keep in mind that with OCD you'll have a tendency to turn "extremely unlikely" into a loophole, because it will keep feeding your spinning thoughts back onto your obsession. When your anxiety (OCD) has focused onto your health, one on the big problems with self diagnosing and continually using medical terms you've decided you have, and reading about the medical condition you've focused on etc, you are creating a perfect storm of disbelief and denial the more solidified the belief becomes in your mind.

The more you believe something as if it's your truth, the harder it is to accept invalidation by anyone or anything and turn your OCD away from what you'd convinced your self of........challenge your thoughts with your absolute truths, stop feeding the obsession by engaging in the compulsive behaviours, get off line if you need-must-have too and keep physically and mentally distracted etc

It will all help to start getting your thoughts back on track, it will not be easy, it takes a lot of conscious effort and often ongoing medical intervention but you will change your tomorrows if you focus your attention onto your mental health condition!

Good luck and I wish you well...........JJ

[HVAC]

Many people have issues. Mine is depression, anxiety, and PTSD. Over time I have learned to live with them. I take medication and went to counseling for years. Now I am working with a health coach writing. I write when ever I feel anxious or bored. It gives me an outlet. Sometimes I think I do not need the meds. With my doctors permission I try cutting back. I feel bad again and get back on my regular dose. Human beings are complicated.

Alex

[Krispt]

Hi Ess
I already have treatment for that and an appt with a psychologist soon
Thankyou though it's really appreciated. I am happy he's said not Ms Im only cautious because of stories of other people in a similar place
But I know it's extremely unlikely now with negative mri, Norma neuro and two opinions with also a possible explanation for the issues
Thanks thiugh I mean it

[essdipity]

It's not the right symptoms for MS, period, without other evidence. Why are you not glad you don't have MS? Why do you keep diagnosing yourself?

When will you put treatment for your health OCD front and center? Not just saying it, but doing it?

[Krispt]

Hi thanks Alex
I said that to the neuro myself it doesn't add up really it's too much for ppms but not the right sumptoms etc for RRMS

[HVAC]

I have PPMS. My symptoms are all permanent. It is not diagnosed until your late forties. It picks up speed in your fifties. It is so subtle you do not usually notice new symptoms until you have real trouble walking. I drag a leg. My GP found my MS by accident. I did not complain about symptoms. I thought what was happening was normal. I showed MS on my first MRI and all other tests showed MS. All blood work for other illnesses was negative. Only 10% of people diagnosed with MS have PPMS. Most RRMS has inflammation that comes and goes PPMS is nerve damage which is permanent. It takes a year after diagnosis of MS to be diagnosed with PPMS.

I have permanent double vision, vertigo, major, cognitive issues, lots of pain, and I drag a leg. I have to work hard at things.

Alex

[Krispt]

Hi JJ
Thankyou I appreciate it and all the time for your replies, I know it looks like I don't listen but I do, as we know I haven't been the most logical thinking whether because of the issues or other problems or both
Thankyou though
And yeah it's great news, I'm still being cautious as I'm not sure All can be caused by bulging discs but I'm listening to what he says and seeing how the lumbar puncture goes tomorrow too

[supermum_ms]

It's late here in OZ and i've just my reply which took me a long time, has crossed paths with more posts since i started...............that's great news in relation to MS!

Cheers.........JJ

[supermum_ms]

I believe you would benefit from a friendly reminder, those of us that have been talking to you about your OCD mental health issue, have done so based on your own words!

You've said that your MRI was normal but you still convinced your self that it meant it was really bad, that you read about symptoms and then experienced it, that you self diagnose, that you were still convinced you were rapidly 'progressing' even though your neurological signs are normal etc etc

The entire point for me in talking to you about your anxiety and anxiety feeding behaviours is that it was from my experience a higher priority, compared to any other 'possible' medical issue that you 'may or may not' be diagnosed with in your future. Your anxiety was extremely high and was still seemingly escalating each day, anxiety in it's extreme can be a serious medical situation when it effects your judgements and logic.......      

Keep in mind these 'anecdotal' stories ie "read about people who have had very vast progrssion and some who tell me they have symptoms come and go all the time" if you are implying, are stories from diagnosed PPMSers and experienced the same escalation of perceived symptoms as you have, would be still be inconsistent with how PPMS is medically determined.

Keep in mind that If you have been using medical terms elsewhere, with out disclosing the self diagnosed part, the PPMS stories you think is like your situation, would still be very different to yours, because they will have been medically diagnosed and have diagnostic supportive evidence of those issues etc Also If you are in the mindset to do so, misinterpretation of information is entirely possible when overly anxious too.....  

Good luck with your MS appointment, and let us know how you got on

Cheers............JJ

[Krispt]

Hi Barb
Thabkyou
I was suprised he said its not Ms! I didn't know he could
He's one of the best neurologists in the country though as was the other one, he's throigh a private bupa hospital too so he knows his stuff I guess
I'm happy but nervous incase something's missed, but like he said to have normal mri again and normal neuro With everything I'm feeling is not normal

[bbassel]

I am glad for you. Hopefully now you can get back to enjoying your life.

With validation again from this neuro you should know that there is absolutely zero percent chance you have ms.

All the bbest

Barb