So Scared - No strength left

New diagnosis and before diagnosis
1

Hi. I am a 40 year old man. Lemme tell you my story. 5 months ago I had a dream life. Great family, friends, home on the lake, always social, and always laughing. Then, On Friday, September 13th, I felt lightheaded and dizzy, and this terrible feeling of sinking. This feeling scared me so much, that it lanched a full blown panic attack. Since then doctors have diagnosed me panic and anxiety. So no matter what happened, they always summed it up to anxiety. I get dizzy and walk into walls…Anxiety. Blurred Vision…Anxiety. Numb face and hands…Anxiety… Tingling… Anxiety… You get the picture. The last 5 months of my life have been a living hell deling with panic attacks even though I had never had one before in all my 40 years and am an extremely happy person. My family has suffered as I have 2 young children. I have gone from being a great dad, and husband to bedridden at times and barely functional.

I always maintained I was not anxious, but that certain feelings in my body would come on without warning and launch me into panic attack as it scared me so much. My doctor would never acknowledge this as anything more than panic and anxiety. I had asked several times to have an MRI of my brain, because my cousin had a very aggressive form of MS and died within 5 years of diagnosis. My doc assured me that the MRI would have nothing, but said she would order the MRI just to make me feel better.

Well, yesterday the results came in. I have lesions on my brain consistent with MS or chronic Migraines. This is what she told me. Well, since I have never had a migraine, that leaves MS.

I am scared out of my mind. I have been dealing with a “panic disorder” for 5 months and I don’t have the strength for this. I watched my cousin, to whom I was close wither away and die in front of me. I walk for MS. I fundraise like crazy all in his name. And now I may have it? There clearly is no god.

My doctor is telling me it can take years to diagnose. Is this true? I don’t know what to do…

I have already been in crisis for 5 months, suicidal due to drugs, and panic and not knowing whats wroing with me…

I’m lost. And I’m so scared and so alone.

2

Hi I can totally empathise. A doc told me I had stress and anxiety and I’d laugh at the carry on in a few months. At that point I couldn’t write walk lift my arm, even I could be a doctor I worked out it wasn’t stressed. Another doctor wasn’t happy admitted me to hospital ct scan showed inflammation and lumber puncture was inconclusive. MRI shouted leisons on my brain. Then another huge relapse 5 months later saw me hospitalised and diagnosed with ms. Keep a diary of any new symptoms that is really important. I left my husband the week before the attack mum got landed with me my 4 year old son 12 week old daughter and my dog. Ex didn’t even see how I was in hospital. I knew things were happening all the time. Side had another 2 relapses and have an MRI in a few weeks again with a view to going on a second line treatmentX It is bloody scary. I feel like in trapped I can’t do the things I used to.i get up get through the day and up chuffed it’s bedtime then in begins again. They say the first year is the worst Feel free to pm me anytime Good luck Em x

3

What a horrid time you are having. No wonder your life feels as though it has come under mortar attack.

If there is one thought I would like you to hold on to, it is this: you will not always feel as bad as you do now. Keep telling yourself this. Even if you don’t believe it, keep telling yourself, because it is true. The panic will die down, you will get over the shock of this barrage of chaos and bad news, your natural resilience will reassert itself, you will find a calm space in which to assess your situation and you will start to plot your course through it all.

The best indicator of how a person will cope psychologically with illness is the kind of character they were before illness struck. A cheerful, positive, go-ahead person will tend to get back to being a cheerful, positive and go-ahead person. We are all strongly inclined to revert to type, whatever life throws at us.

You will get through this horrible phase and come out the other side, whatever is the matter. Just hang on in there.

Alison

p.s. I assume you are being referred to a neurologist for a specialist opinion? It is certainly true that some people can go for years without finding out for sure what is wrong, but I would not say that this is the norm. If it is MS, it is more often possible to dx in a matter of months and sometimes less than that.

4

hi friday

just because your cousin had such an unusually severe form of ms it doesnt mean that you will too.

my auntie had a severe form of ms and died really young. this made my dad believe that i would go the same way and i promised him that i wouldnt.

try mindfulness meditation, it works!

i did it for pain relief but now i just do it when i feel anxious.

carole x

5

Thanks for the responses guys.

I am definitely having panic attacks. But they started out of nowhere, and are my reaction to certain things my body does. I have not felt well in over 5 months. Literally ill and dealing with various physical symptoms every single day. Because in the beginning I had a panic attack (do to a strange feeling in my body freaking me out), I was diagnosed with panic disorder and every single thing has been attributed to anxiety. I have literally lost my wonderful life. I suffer every single day, as I get a feeling, and subsequently have panic attacks. I have tried therapy, (Still am), and I have done everything asked of my by the doctors. I simply do not know what to do to help myself. I am becoming suicidal as I no longer have any quality of life.

I think about my 2 beautiful children (7 and 9) growing up without a dad.

Today I go for an eye exam to look for optical neuritis. I don’t know what the next step is after that. But I am completely unfunctional at this point, and that doesnt seem right. How could I go from a completely healthy fit and active 40 year old man in to this in 5 months?

Is there anything else these brain lesions could mean? Doc gave me 3 options. Migraines (never had any), ageing (I’m only 40, and MS website says that “CAN” start for people usually older than 50), and lastly MS… So of course given these 3 options, combined with the symptoms I have been experiencing, I naturally am thinking it’s MS, especially given the family history.

Here’s a list of my symptoms

blurred vision, tingling and numbness in head, face and hands, headaches, Sleeping problems, Tingling across back and shoulders, fatigue, trouble swallowing my own spit lately and if my throat locks up, dizzy spells, derealization, anxiety, panic attacks, nausea, stomach discomfort, lack of focus and concentration. Theres more but I can’t think of them all.

now could all these be anxiety? Sure. So I am told and have read. But that MRI reading combined with this is pretty scary.

Is it possible for MS to literally strikeso quickly with no warning? Or perhaps, I only get the ocassional MS symptom which is what launches my panic attack, and there’s anxiety symptoms mixed in as well.

6

Also, I guess all my hobbies will come to an end. I ride Mountain Bike ALOT, competing in Marathons. I also play hockey 2X per week, and I play Guitar daily, and also in a band as guitarist and lead singer. These are the things I have in my life that keep me going. They are my life therapy, and fun. All very important to me.

The thought of losing these things, whch would likely be inevitable is very frightening and depressing to me.

7

Also, I guess all my hobbies will come to an end. I ride Mountain Bike ALOT, competing in Marathons. I also play hockey 2X per week, and I play Guitar daily, and also in a band as guitarist and lead singer. These are the things I have in my life that keep me going. They are my life therapy, and fun. All very important to me.

The thought of losing these things, whch would likely be inevitable is very frightening and depressing to me.