I believe i just entered the dx limbo

New diagnosis and before diagnosis
1

Hi everyone,

Short story
I have had brain mri (no contrast) with white matter lesions on both sides (but not deep in the brain) I think it was many as it did not say how many. The findings was uncertain of vascular conditional degeneration OR neurological desise/ms.
Cervical spine clear, LP clear (got result his week). One clear EMG of left arm and one EMG of tibialis muscle was slight positive but the comment from neurologist was the positive emg does not represent my symtoms.

Symtoms: Stiff hip, weak right ankle, weak right arm and hand. Blurryish vision (went to eye doctor, find nothing) Bladder urgency. 2 days of bad brain fog.

Not sure of what to do as I feel the urgency of a dx.

Long story:
You probably heard this story before but I feel that I need to express my thoughts and maybe find someone with similiar story.

I have been feeling that something is not right with my body the last 2-3 years. It actually started with unspecific inflammations of my genital. Only 1 another doctor could confirm with me after 9 other said it all looks normal. At the same time I had periods of sore throat that comes and goes for 1-2 days sometimes with earpain. During this time I also had pelvic pain and different sensations of my genitals, bladder urgency. The dx was prostatitis.

Prior this I have had and still have a stiff hip, probably had this for 5 years but could not put ā€œa nameā€ of what my weird feeling of my right leg was. I also had 1-2 random muscles aches on my right leg and arm.

My right side of bodys joints started to feel stiffer, my skin on right hand feels ā€œtighterā€ it feels like there is more ressistence when straighten my fingers. After many ā€œits all in your headā€ moments I developed health anxiety.

The neurological symtoms starts this year:

Before may:
Earlier this year I noticed that I use more my left leg when I stand up from sitting down and noticed that right leg feels weaker, I aslo started questioning myself if my fingers feels weaker of my right hand.

During May:
So my first neuroligical appointment was because of feeling tingling sensations of left arm, most noticeable during different positions of arm. EMG Clear.

Noticed painful twitches of calf muscles but ignored them. My hand and fingers started become more painful during work out, thought it was age related (I am 35).

July:
First dose of covid vaccine and 2 weeks after the vaccine I had huge fight with my wife and the next day it all just accelerated with tingling, crawling, twiching of my legs muscles. Foot started hit the ground very slightly but I could ignore it because I thought it is probably because of wearing slippers.

During next weeks twitching continued over my whole body. My foot was still hiting the pavement sometimes but thought it was because of uneven pavement and roads.
Headache for 2 days with painful neck afterwards and dull heahache from backside of head all the way up to center of head on my the right side for around 3 weeks with somedays being worse.

After 6 hours drive my right foot was aching and hitting the floor frequently, with one day rest I felt better again.

August:
Back home from holiday, and right arm is sore of lifting bags during flights the day before.
I had prebooked meeting with neuro, I explain that my ankle feels loose and have numbness feeling on my face, explained the drop foot. He sends me to MRI with no contrast but says its probably stress and mentions benign muscle fasculations but wanted check up the drop foot.

Fast forward two week and I almost certain that my hand is weaker. I notice that my palm muscle (brevis) has cavity in it when flexing (looks sunken) emg clear.

Pins and needles, twitching continues. Anger issues and agressive thoughts (not normal for me)

September
Brainfog 2 days, I could not concentrate and feelt like I was outside of my body. Playing a simple cognitive mobile game of sorting 2 colours as fast as possible in 1 minute made me exhausted, needed to rest. This really scared me.

Tiredness that comes from nowhere and stays for few hours.

Ankle is weaker and looks smaller. When I am exercising my ankle muscles, it becomes fatigued the next day and starting what feels like a beginning of drop foot.

Other symtoms
Balance issues sometimes because of weaker foot, slurring of words, tinnitus and another weird sound, blurryish vision sometimes. I see everything but vision still does not feel 100%.
I noticed the blurry vision feeling is more noticable while reading a text on the computer screen like when writing this book of symtoms. Difficulty planning at my work during the whole year, I thought it was due to exhaustion.

At moment
Consistent bladder urgency. Less twitches now, some days pins and needles but weak ankle and weak right arm is still there.
Numbness of hands, when the arm are in different positions, like holding phone while laying down above my face (did not have this issue before)

Coming up is MRI of spine and lumbar spine, and reumtoligst for rare desises such as Behcets desise (I do not really have those symtoms).

Thinking if I should get contrast MRI to see if there and any active lesions?

I am also wondering if other people feel their immune system is acting weirdly excepts of attacking the myelin?

Feels good to write everything down and sorry for long post.

1 Like
2

Hello

I donā€™t know what you expect from the members of this forum. Iā€™m not intending to be rude. But:

Your post is too long.
We are not doctors nor medically trained (mostly).
You have a neurologist. You need to trust them.

Best of luck.

Sue

3

Let him talk Sue! It can be cathartic and itā€™s up to the rest of us if we choose to read a long post. Or not!

I donā€™t trust my Neurologist - or at least not yet. And Iā€™ve learned plenty on here from reading other peopleā€™s posts, it helps to make sense of it all as we look for patterns.

So each to their own. Iā€™ve read your posts, Sue, and found them helpful, informative and compassionate, but this time we disagreeā€¦ No hard feelings :grinning:

1 Like
4

Did not expect that as the first reply. Mostly I just wanted to get everything out there for myself.

I actually missed to write about that I changed neurologist. I felt no trust for my first neurologist as he said its benign, stress related, probably not neurological desise. After the result coming back stating that the findings is probably nothing 20% of the people have white matter liasions and MS symtoms are are more severe and visible but he still ordered the LP. No trust from my side.

Second neurologist noticed staight away the weak ankle and have order the other MRI but mostly I trust this one.

Thanks GCCK for your reply, it just felt good to write about everything as last months has been overwhelming with emotions and the lack of people understanding me.

1 Like
5

Keep it coming!

We each only have ONE body, whereas to our health practitioners, we are case numbers. They have the knowledge and experience and are right most of the time, but not always. MS is an inexact condition and one in which the medical profession at large is still learning and experimenting, so it is a valid approach to question the decisions made.

The internet has democratised knowledge, so the Consultants and others are no longer the gatekeepers to that knowledge. I am not working currently so have ample time to do my own research - is it so unthinkable that I might get to an answer - my answer - more quickly than my team who have hundreds of patients on their books? Itā€™s not arrogance but a practical assessment.

6

So, OK I appreciate that perhaps I was a bit blunt. As GCCK has said, I am generally ā€˜ helpful, informative and compassionateā€™.

However Bastadagen, maybe youā€™ve noted that thus far youā€™ve received no actual helpful replies to your (in my opinion) overlong post. I suggest that were I to have worded my reply a little more sensitively, I was still correct in essence.

Maybe GCCK, you might have noticed that you too have failed to provide Bastadagen with any concrete assistance with his post? What you have done is complained that I wasnā€™t very helpful. Plus empathised with Bastadagen.

In fact, the only actual question which Bastadagen has posited seems to be: ā€˜if other people feel their immune system is acting weirdly excepts of attacking the myelin?ā€™ In essence, this is what MS does. The immune system has cells which normally fight against enemy invaders (infections and viruses typically). In an autoimmune condition the cells have mistaken healthy tissue for aliens and attacked incorrectly. In MS the attack is made to the myelin which covers the nerves in the central nervous system. So were we all to understand our condition, the answer to this question in every diagnosed person on this forum would be yes. But, once again in my opinion, that in itself wouldnā€™t be of much use to you.

So, I apologise for my overly blunt initial reply. But, given the lack of helpful replies youā€™ve had, I suspect the only positive result you could have received would be what you noticed yourself, just writing the post was helpful to you.

If you have questions which youā€™d like the members of this forum to help you with, I suggest you simplify a future post. Keep in your mind that we can only help with information weā€™ve learnt by experience.

Sue

7

Sue
I refuse to get drawn into a war of words with you and certainly not on someone elseā€™s thread. Just lighten up!
Graeme

8

Childish bickering above

9

I also think your post is a little longā€¦.however I believe forums do need to let you have a space to vent. Do not get too stressed. In my 20 plus years of this illness I had more questions than answers. I have seen 3 neuros two unfortunately have passed awayā€¦ā€¦All have not had answers to my questionsā€¦I got diagnosed with lesions after an mri scan I felt over recent years things were get better for meā€¦I had an mri scan arranged by my gp recently after some audio disturbances. After 20 years I have no lesions ā€¦how weird and no sign of active MS

10

I too am waiting and wish you well. Iā€™m working on the basis Iā€™m not ill until I have a diagnosis. Stay strong.