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1.5 years of misery

Hi Ronaldsmith - I notice you say that the report mentions something about degenerative posterior something or other? Maybe you have some kind of degeneration of the discs in your spine and that is what is causing the symptoms. Did you receive just the report of the MRI? If so you probably need a Dr to explain the findings in full…I have had a diagnosis which was RRMS last year but I had another scan a while ago - on 12th June and I am STILL waiting to hear back from them! It’s so hard to concentrate on anything at all when you are waiting to find out what your body is up to! Good luck, I hope you find answers soon.

Hey Ronald,

Hopefully they will do some more investigation on the abnormalities they found on your spinal MRI? It doesn’t seem fair to tell you that you have problems with your spine and then send you on your way.

I know it wasn’t the outcome you were expecting, but with all the symptoms you are having and it affecting your quality of life, I would keep pushing for answers, as hard as that may be.

Hey Chris,

I myself called the neurology clinic/department (is that what its called?) of my hospital, because I received a letter in which they stated I would get a phone call from my neurologist on august 10th (over a month!). Turned out my neurologist has taken a holiday. I then said that i felt really really horrible, and that i’m somewhat bedridden due to my symptoms/complaints. I also mentioned that my left hand gets completely numb multiple times a night now, without me laying on it. The lady on the phone said she would let the other neurologist at the clinic/department know. After a couple of hours I received a phonecall from another neurologist. A younger man. He apparently has looked into the system and told me about the outcomes of my scan. Little starting arthrosis is normal at my age he said. And furthermore, that there is nothing to be seen that can explain my symptoms. He then continued talking about conversion disorder, and that I should focus on reducing symptoms rather than focus on finding the cause.

later, I myself could see the report of my scan online (the hospital has a system where patients can see their results, appointments, etc.). That’s when i read about the TH1-TH2 thing. I don’t really know what it means. But I recon a trained neurologist would know when something really is not right, right?

Yes, you are right Chris. I have to keep pushing. But I’m stuck (no appointments to come) and completely out of energy. The hardest thing might be the fact that i’m starting to notice that my family, friends and even my girlfriend don’t always believe me anymore. Can’t blame them, but it hurts. What if they leave me to be. What if my girlfriend can’t take it anymore? Or her parents/family want nothing to do with me.

Hello Bouds,

thanks for replying. I really am in disbelief. Although its been 1.5 years now, it still feels like i’m in a really bad dream sometimes. I have never been sick in my entire life. But now my life is gone. My plans (travelling and making a career) and dreams (having children, etc.) are useless.

I am glad to hear that you have received a diagnosis after all that time. And I hope you get all the care that fits it. Seems like you have a good relationship with your neuro. However, I live in the Netherlands, so I think that is going to be difficult.

Hello Juniper. Thank you for replying. Yes, but I don’t know how to translate it correctly. As I mentioned above, I noticed it myself. The neuro whom I spoke to didn’t mention it at all. I assume he knows how to look at findings/scans right? It is also very specific (just one place). Also, my complaints started out of nowhere. So I don’t think that could be it. But i would like to speak to my own neuro face to face.

Im sorry to hear you have RRMS. Did it take long for you to get a diagnosis? And is the scan you’re waiting for a second opinion? How are you managing now? Yeah, It is very frustrating. Waiting, waiting waiting. The only thing you can do. Wished we lived in the future where one could be diagnosed with whatever is wrong in just one scan :slight_smile:

Hey Ronald,

It really does sound like 1 step forwards, 2 steps back at the moment for you. Addressing the symptoms doesn’t sound like a bad idea though, especially if it makes you feel better.

I understand that your situation is different to mine, and I’m in no way suggesting this would work, or is possible for you to do, but I’ll just explain what has helped me get through the last 6 months. When I was really bad back in February, and I felt like I couldn’t walk anywhere, or do any exercise I pretty much stopped doing anything, resigning myself to the fact there was something wrong that needed diagnosing, and that I couldn’t/shouldn’t be exercising. As the months continued, I was so focussed on the illness that it was all I thought about. All the time, I was not exercising/being healthy, which may not have been making me feel worse, but it definitely wasn’t making me feel any better.

After my MRI came back clear and it was evident that weren’t interested in really doing much more, despite continued symptoms, I decided that I was going to try and live my life as if it wasn’t happening… Even if day to day I didn’t feel great, or had problems, I wasn’t going to complain to my family (as loving as family are, I know they don’t want to hear me complain 24/7), I was going to start working out and exercising again, even if it was just small things to get moving.

The point of this was to get my focus elsewhere and let a diagnosis come (if ever) in due course, rather than sit around and wait for it, which just adds more stress to an already stressful situation. Although hard going, exercising has made me feel better overall, along with the added health benefits, both physical & mental. And lastly, it makes it a fight, I don’t want to let whatever is going on with my body win, so if the doctors aren’t able to help me, I decided to not sit back and just let this thing rule my life.

It’s not a cure, and it hasn’t made my symptoms go away, however it has helped take my focus away from it for the most part. I know this may not be possible for you, but wanted to share, just in case there is anything there that might be of help to you.

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Hi Ronaldsmith - There is some really useful explanations on this forum to help us decipher some of the medical terminology, also I know a lot of people say don’t Google stuff but I always do as it can lead to some very good quality info - I feel I am able to evaluate for myself whether or not the site I am looking at is authoritative or not - my own GP uses Google all the time! I had symptoms going way back, over 15 years but the doctors always put it down to something else. I had a lumbar puncture to confirm the findings of the first MRI - the second one that I had a few months ago is just a catch-up to find out how things are developing. The news was good, no new lesions but the ones I have - and they are numerous on the spine, not so many on the brain - are still there and giving me a range of symptoms. Good luck in your quest for answers.

Hi everyone,

it’s me again. Unfortunately. Sorry for the long upcoming story. It has been a while since my last post. And I wish that would have been my last post. The last 1.5-2 months I tried to take in your advices and, even when I knew that would be impossible, ignore my symptoms as much as I could. I really tried to live a more ordered life. Waking up and going to bed at the same time, eating healthy, trying to go for walks in the evening even though I exprience(d) severe walking difficulties. But no matter how hard I tried, my symptoms got even worse. And, as I said, I’m not seeing any doctor anymore. No tests to look out for. Nothing. Decaying away.

As said, my symptoms progressed. My balance/coordination is even more poor than before. Walking up the stairs feels like walking up a mountain. My tongue is comletely numb. Again a new symptom. Hurray. And ofcourse, the muscle twitching and tinglings (I don’t know if it is possible to add a video or something), which goes on and on day night. So all in all, life for me right now is unbearable.

In addition, my stepdad’s father has late stage cancer (is going to die soon) and my father has been diagnosed with heart failure, but they don’t know the cause of it. And they have to find out what is causing it, or else he has a very very high risk of a stroke or heart attack. Plus they are going to stop his heart for a few seconds.

So my family is going through a lot at the moment, and I don’t want to add my misery to it. I often stay at my home, lying in bed all day, and just tell them that I’m doing okay. Even if I’m not.

My GP does not want to help me anymore. And other GP’s don’t take in new clients right now. There is a shortage of GP’s in our country. I have been examined well enough, is what he says. I should give it a rest and wait for the psychologist. Meanwhile its going from bad to worse. My symptoms keep progressing and new symptoms keep coming. I know something is terribly wrong with me. I basically got all symptoms of MS, but no diagnosis. If this goes on, I’m scared that i will hurt myself in some way. Im stuck and desperate for help. This is unbearable.

So, if someone has any suggestions, please share them with me. Should I go private? What else can I try on day to day basis? Should I call my health insurance company and demand testing? Anything?

Sorry, again, for the long story. I hope you are all doing well.

Ronald.

Hello, from your post you seem in real anguish and frustration which I can understand with the symptoms you describe, if you can go private I would absolutely recommend doing this as you might get some answers you require. Is there any helplines you could try so you can talk to someone about feelings? You sound like you could really do with someone to speak too.
I hope you find the answers you are looking for. Stay safe

Hi Ronald,

I am no expert on anything medical but cannot ignore your posts which clearly show your emotional pain and fear. I find it hard to believe that your neurologists are so dismissive, it’s really terrible for you. The things I write below are just my opinion and are not medical advice

I have looked up TH1-Th2 degenerative posterior…

TH1 - TH2 is the thoracic spine, the top part of it where it joins your cervical spine which is around your neck area. Posterior means the back of your spine, anterior would be the front of your spine.

Degenerative means in simple terms, something that is getting worse, and in this area could be a disc which is damaged.

So putting that together, it COULD be a mechanical problem, a part of your spine which is damaged and which is causing numbness, tingling, weakness, spasms and may be interrupting nerve signals to anything below that level, because it could be compressing nerves in the spinal cord, but not be MS or not be Neurological.

This could be caused by something like Osteoarthritis even.

I only say this because my husband has Arthritis on his spine which causes “degenerative disc disease” and he has tingling, spasms , but not as severe as yours. He is 53 and has had this since he was in his 20’s.

So it may be worth asking to see Rheumatology, or Orthopaedics, or going privately to ask them some questions

hopefully they could use information from the existing MRI scans.

Please please don’t take my advise as real medical advice as I am only using my husband’s experience here, but it may give you some other things to explore and it may be something that can be successfully treated and controlled once you can get answers.

Please don’t give up!

Minnie xx

Hello everyone,

it is me again. Not sure if the wonderful and supportive people who replied before are still active. It’s been a while since my last post. Unfortunately, after nearly 2.5 years, I still have not received a proper diagnosis. Save to say that it has been driving me crazy by now. How can someone experience such deliberating and progressive symptoms without them (the medical world) knowing what is wrong.

So, out of pure frustration, I am going to list all my (new) symptoms one last time in the hopes someone might recognize something. I myself still think I have MS and they are wasting precious treatment time. But all I hear is “your MRI came back normal, so no MS”. Well here goes:

  • Tingling and burning sensations in legs. Most noticable at night.
  • Muscle twitches/spasms widespread. The weird thing here is that when I flex a muscle, I get a reaction. So when I flex my biceps for example, it will twitch/spasm as a result. This goes for all my muscles, especially my eyes, legs and upperarms. I have read that this is a bad thing?
  • Extremly tight feeling across the chest which is always present. I remember the day when it started. It never went away. The only thing that helps is pushing back with a flat hand or a taking a warm shower.
  • Insomnia mainly due to shortness of breath. When I lay down (flat) I experience breathing difficulties.
  • Brain fog and difficulties experiencing sensation.
  • Coordination problems and severe dizziness.
  • Problems with diggestive system (on medication).
  • Extreme fatigue. Exerciece intolerance.
  • Symptoms increase with tight clothes on and after sitting in the same position for too long.
  • Sometimes sharp pains on the side of my head next to my eye(s).
  • Shaky muscles (when bending/stretching).

Worth mentioning:

  • I got sick out of the blue. 25th of february 2019. Like some sort of an attack while laying in bed. Never got better.
  • Clear one time MRI of the brain and spine. No abnormalities in bloodwork (lyme, ANA, glucose).
  • I finally have a new GP. My first impressions are good. So much more helpful than my previous GP. He says he is going to do everything to help me. I started to cry so hard when he said that. Due to being relieved and in disbelieve (got a flashback of how I went from completely healthy young adult with a lot of dreams to what I am now).

Thanks to all who have taken their time to read this. And this is only a brief summary of my 2.5 years of misery. Is there anyone who recognizes anything? Anyone who has went through a period of non- or misdiagnosis?

I really don’t know what to do anymore. Out of options. I am starting to wonder if this is worth living for. Not suicidal at all, but it is just unbearable. I just can’t take it anymore. Every day is like hell.

Hello Roland.

I have read through this thread, and what a time you have had.

I’m no expert on MS, i hoping i don’t have it, but i’m experiencing the same symptoms as your self well most of them. I had an MRI done in January which showed legions, but i remain hopeful that i don’t have MS, wait on neurologist appointment which could be a couple of year’s away, or so i have been told, was gutted at that as i want to get back to work.

I know it’s hard but laying about the house is no good, the bed even worse. I have addressed my balance problems with a stick now, and the numbness and loss of power in my hand, and knees giving out, i just work with it, as in taking a break when needed or going for a nap when really tired. The tingling sensations whoa not sure how to explain them, but they aren’t top of my over comes put it like that. My neck has been stiff for year’s now, that’s why i’m hopeful it’s not MS and a trapped nerve or some such, plus i have arthritis top and bottom of back. So really hoping it is not MS.

We have moved house lately and we need some renovations done, my wife came home from her work yesterday, and asked who the stranger i was talking too was, and i told her the architect for the new garage, she then asked had i got any builders lined up i said yup me :slight_smile:, she then through a wobbly (no pun intended :slight_smile: ) saying i wasn’t fit lol.

If i’m going to sit at home waiting on answer’s i might as well do something constructive, even if it takes me longer to do it. I have always subscribed to the dwelling on things ain’t healthy attitude, and i have been on the sick since before Christmas, so plenty of time to dwell.

Now in no way shape or form am i saying i’m worse than you, but try too motivate your self mate, sitting/laying about ain’t good for you. Even build jigsaws or something similar to take your mind mind of things, but keep up the fight and keep looking for them answers.

Mac.

Hello Mac,

thank you so much for replying and trying to motivate me to stay positive. I really appreciate it!

And I am so sorry you have to go through all the things and problems you just described. I know that one must never lose hope. But it is so hard when you’re confronted with an invisible and (in my case) undescribed beast every single day. Hence I wrote my previous message. It got the better of me this morning (writing for The Netherlands).

May I ask if you have had an second opinion? I mean, they did find lesions on your MRI right? How many did they find? And where? Spine or brain?

Did your neurologist order an lumbar punction? I mean, I obviously also hope you don’t have MS, but if you do, the earlier you know the better. Than you know what you are up against, and you can start fighting the beast with medication, therapies and lifestyle changes. Unfortunately you still hear a lot of stories of people who had to wait years to receive their (correct) diagnosis. With a lot of damage being done by then.

The weird thing in my case is that I do not experience loss of power. So yeah, my symptoms point to MS, but the evidence is not (yet) there. I have not had an lumbar puncture however. I am hoping for a second opinion.

Btw my thyroid and vitamines are also (functioning) normal.

Ronald

No need need to be sorry Roland, we all have to play the cards we are dealt.

That’s a good question about the amount of lesions, as i never asked the GP, and one i must remember too ask, and yep on the MRI. In all honesty i don’t know anything about lesions, and was waiting for the neurologist to explain what i need to know. I haven’t seen the neurologist yet. My GP red flag it, and rang yesterday for me to come and see them, hopefully good news.

My wife is looking me to go private neurologist, for the first meeting or what ever it’s called.

Just because i lose power and you don’t, doesn’t mean that you don’t have symptoms of MS. I’m a new member of this forum, and you will see plenty of MS diagnosed persons say no two are the same.

I haven’t got LP yet, though it was my rheumatologist who first mentioned MS and had i an LP done, before that i had never heard of it, and to be honest looking back happier that i had never heard of it, and thinking bad vertigo. Then proceeded to do the silliest thing DR Google lol. Well i suppose we need to silly things every now and then to remind our selves not to do it again.

I know it’s hard (for me anyway) to put it out of your mind, as something always happens and brings it to the front again. Mentally your better trying to live life as normally as you can, and not let it get in the road. As i say i’m hoping i don’t have MS, and do i really want to find out, and do i really want to ask too many questions? in my view ignorance is bliss sometimes. I have a lot still left to accomplish, bad vertigo/nerver in neck spine are still on the table in my head anyway.

Stay strong Ronald, and keep at it.

Mac.

Hi Ronald! I am in the very same boat as you except my brain mri had minor foci (2 neurologists said insignificant). C spine was clear despite electric feeling in legs when bending neck.
T spine wasn’t scanned because my doctor does not think I have ms. He says that my brain mri and c spine mri 1 year after the first one haven’t change (in fact, brain mri had one foci disappear).
The symptoms are horrible though. I can’t stand this neuropathic pain and tingling. I also have a 3 months old daughter now and these symptoms returned and are hitting me hard.
I wanted to check how you are doing?

Hi Babybird,

sorry for my late response. Somehow I did not receive a notification of you replying. I am so sorry to hear that you have to go through all of that. Just know that you are not alone. And keep pushing. You have to be your own advocate. If a doctor does not want to conduct more testing, ask for a second opinion. I just recently switched GP’s. I wish I had done it way earlier.

Have you thought about going private? Yes, it wil cost you some money, but it might lead to a breakthrough. And have you looked into other possible causes? Thyroid? Vitamines? Lyme? Lupus?

I am thinking about going abroad if nothing changes soon. I just can’t take it anymore. My legs hurt and burn constantly, I am dizzy 24/7, my stomach is a mess. Just unreal what i happening. I just demand answers.

Hi Mac! How are you doing ? We are all in the same boat , and I hope we will find some relief from this nightmare.

I live abroad and pay for every investigation , so already am private. I’m so sorry to hear you are also still suffering
My thyroid has crazy high antibodies (hashimoto’s) but hormones are all good , so go figure.
Lupus was negative. Lyme wasn’t tested (tropical country, no tics here I think).