nold 25/11/14
Last reply 3 years ago
A little bit of panic….

Hi everyone.
I’m feeling totally crappy at the moment. Not just that i have bad cold, the problem is the emotional side. Just have to speak about it. A the moment I don’t have anyone who can listen and understand what I am saying.

I always thought I was healthy. Just a little bit overweight, but i did sports regularly. But there where some disturbing little things that bugged me. Nothing big, weird feelings in the stomach, some tingling, concentration problems etc. I always thought its from a poor diet and too much stress. This year I decided to do something about this stuff.
The result was that my gall bladder was removed, and I was diagnosed with asthma, gilberts syndrome, diaphragmatic hernia and ms all at once.

Doctors diagnosed RRMS, but I still think of some progressive form, just because I never had a relapse or remission and every symptom I have came slow and over time. I think they haven’t decided for progressive because they still wait to see a year of progression without relapses.

When I was diagnosed in April, I had mostly sensual and cognitive problems (Tingling, lhermitte, brain fog etc) and I was quite optimistic. I started to adjust to the new situation. Making financial plans, I was looking for a new flat (actually i live on the 4th floor without elevator and the stairs are not getting easier)and things like this.
But in the six months since diagnosis things seem to get worse too fast. since September I have spasticity in my legs, an a few weeks ago my arms started twitching and moving around also. All limbs grow heavier each week. My concentration is completely wrecked up, so I have to fear about my job as software developer. When cognitive problems get worse, I won’t be able to do this job much longer.
I mean… seriously… so many diagnoses in such a short time. MS seems to get worse so fast. Most other MSers I talk to report from problems whith their legs or their hands. I have problems everywhere.. legs, arms, head, cognition, tingling on the whole body, fatigue. Even the uncommon symptoms like constant ringing in the head and other stuff. It’s just changing too fast to adjust to it.

At the moment it’s virtually impossible for me to stay positive. I just can’t get rid of the thought of losing control over legs and arms and head and being completely helpless in the course of a few years.

In addition, after being in relationships since I was 17 and even being married for years, I managed to get all this crappy stuff after the divorce. So I have to face this completely alone which scares me even more. At the moment I just don’t know what to make out of this.

Thank you for listening. I just had to get it out πŸ™

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stumbler
3 years ago

Hi @nold , I should imagine that you feel just a little better from writing all that down.

But, you have been through it a bit with your recent history. Anyway, the diagnosis of MS is very much down to test results (MRI, Visual Evoked Potentials & Lumber Puncture), present symptoms (plus nerve conduction and reflex tests) and your clinical history.

Now, the clinical history would include any potential related episodes, symptoms and duration. And, this is where the problem lies with the actual diagnosis of a progressive or relapsing/remitting variant.

A Neurologist doesn’t like to guess a specific diagnosis and needs to build up their own picture.

Having said that, MS is a progressive condition, even when it’s diagnosed as Relapsing/Remitting!

The best way forward for us is to try and work with the Neuro and, additionally, try to manage ourselves in the optimal way. So, adopt a healthy lifestyle, i.e. a healthy balanced diet and avoiding extremes of under or over-doing it.

It is also important to try and banish worry/stress from your life. These negative emotions can invoke MS activity. And, with your recent problems, it would seem likely that you’ve been over-dosing on stress.

Things may look bad to you today, but tomorrow could well be better. Stay positive.


cmlawrenson
3 years ago

Hi there, I have never wrote on the site so here goes! I have had ms for 2 years and been on Avonex for a year which makes me feel terrible every time I take it but ha if it slows it down I will keep feeling bad. I get the whole body pain but thought it was just me moaning until I just read your post.I feel so much like you I think right now. I have got this pain in my tummy that is like a massive knot getting tighter and my back and shoulders ar so tense.Im going off my food. Not sure if its stress, constipation, ms or something else so need to say im worried.

My legs twitch all the time and my hand has pins and needles in it. As for my head I really dont feel all the ticket feel a bit of a fruit cake to be fair!!

Ms just seams to be one thing after another. I spoke to another lady the other day and she described it as a list of shit cause there is so many symptoms.

I just keep trying to tell myself there are people out there far worse than I ever am.

Really hope you feel better soon


cameron
3 years ago

Hi @nold. Sorry life is so hard at the moment. Sounds to me as though you’re not able to access support through an MS nurse network – we all need to talk through the nitty-gritty of symptoms at times. Who’s supporting you? Also, your diagnosis is very recent: when I think back to my dx, the two years following it were by far the worst. Don’t assume things are on a definitive downward spiral. They may settle. You may need meds for specific symptoms, e.g. bladder problems. Remember, too, that the MS damage may be causing your musculo-skeletal system to over-compensate, setting off more problems. These so-called secondary symptoms can be as disabling as the MS and it may take a neuro physio to distinguish between them. These symptoms can be reversed with physiotherapy. It’s a complex picture and no two MSers are the same. But we all need emotional support and the right medical help if we’re to manage the condition. Best wishes xx


tabbycat
3 years ago

Good advise from lots of people here. There is no magic pill for all symptoms, but there are some things that cAn be done for some and some times just a little improvement makes all the difference to the spirits. Talk to your medical people, make a fuss, don’t suffer in silence and see what can be done.
It is a rotten time of year and I hope something gives you a lift soon. Big hugs!


nold
3 years ago

Hey everyone ! Thanks for all the kind words and useful advice, you are wonderful.

@stumbler: Yes, I feel better after writing it all down. Definitely helps to speak about it.
@cameron: I’m supported by the local MS – Centre in Gießen. They are very good, but sometimes I believe they do not have the correct picture of my symptoms. But.. communication is tricky, espescially between patient and medical staff. I made an appointment there in december and hope we will be able clear things up and find some possibilities to improve the situation.
@tabbycat: Yeah, I know there is no magic pill, but I have to try to what’s possible. And making a fuss is something I learned. Had to make a big, big fuss to have someone actually looking at my condition earlier this year. If I had been making a fuss at my doctor every day for more than two weeks, I would still be without dx.
The worst guy was this neurologist who looked at the 13-15 lesions on my mri image and said: “Well, the MRI is not ok. Lhermitte sign looks like MS. But all the tingling and the heavy legs and concentration problems are psychosomatic. We could do a lumbar puncture to be sure, but that’s senseless. If it’s positive, we can’t do anything. Just take some antidepressants.”

This guy has never seen me again. I walked straight out of the door and made an appointment in the ms centre πŸ˜€

Thank you all


tabbycat
3 years ago

What a total arse hole!!! You should make an offical complaint, people like that have no right being doctors at all. Diagnosis is horrible enough without that. I really feel for you.


amylee
3 years ago

That guy sounds like my neuro! I couldn’t walk, had hypersensitive hearing, lots of tingeling and numbness and felt so so unwell. The minute I said I felt anxious he put everything down to psychosomatic symptoms. He wrote in my report that it was mostly anxiety induced. I totally believe in the power of emotions and the mind/body connection but having lived through a relapse before that I knew it was all MS, including my anxiety. Of course your anxious when you know your brain is being attacked.

I know you posted this awhile ago. How are you feeling now? It makes sense that when your body isn’t well your mind and emotions struggle to be well also. With MS the focus is on the body and sometimes the mind and emotions get left out. Be good to yourself πŸ™‚ I hope you are feeling better, and if not, talk some more x

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