just lost it
 

I just broke down in front of my fiance because i just dont understand what is happening to me. This was supposed to be the best time of our lives. We are getting married in June in the mountains of asheville, nc. Im only 31 and currenlty undiagnosed for nearly 3 months. I'm lucky to not be in terrible pain but the doctors cant seem to figure out anything and my symptoms dont seem to be getting any better. One day ill think im getting better only to be knocked down the next day with worse symptoms.

Ive remain pretty optimistic but i have moments like these that really tear me apart. Im scared of what the future may hold, how raising a family would be, etc and so on.

I started a sports pick-up group in my city 2 years ago, id never been super athletic but loved sports. In 2 years it grew to 350 people strong. I became one of the top 15 volleyball players in the group, and believe me, my skills started at nothing. I met many great people and kept in great shape and had lots of fun. Now i cant play at all because it makes my symptoms worse. Im just at a loss..

Thanks for listening, i needed to vent and could use any support...
Steve

Hi, my name is Melody and I am so sorry that you are going through this. You are so young, BUT THAT IS THE BEST PART OF ALL THIS. You are YOUNG. These things take time. I've read your other post with all the symptoms you mentioned. Quite a lot going on in your life.

I hope you have a supportive fiancee. And try and keep the stress level down because stress makes EVERYTHING worse.

Nothing much I can say except keep searching for answers. You might find some good info about what you are dealing with and then you can come here and post it and help other people.

We really all try and help each other as best we can.

Wishing you a hopefully happier future and a great wedding day.
Melody

I didn't read your other posts, at least I don't remember reading them. Just a thought...have you been tested for celiac disease/gluten intolerance? Lots of people only have neuropathy symptoms when gluten is an issue for them.

I am sorry your struggling. I know this is a scary thing to face and with so much unknown. My best advice is to stay in the moment which is super hard I know but I am trying to work on that myself. Unfortunatly Melody is right that it takes time to figure out what is going on. With the proper treatment things can get better though. Do you think maybe going to talk to a therapist may help? I waited to long to see someone and get on proper mental meds. It won't take away your physical but it can help with coping and anxiety around it. Are there things you can do with your current physical limits to lift your spirits? I wish I had more answers for you. I hope you can hold to hope and get relief/answers

The guitly feeling of dragging your better half down doesn't help either. At 46 I broke off my relationship with a lovely lady simply because I knew what was coming. She wouldnt accept it and 3 years later she loves me more than ever.
what Im saying is your stress levels are high since others are relying on you.
This is adding to the PN flares etc. The best advice was in the previous post being "live in the moment" hard to do though.
one thing at a time, tear the mountain down into manageable pieces. Firstly your fiancee would have seen you suffer so she knows, that can be the hardest bit, convincing others. Try to be strong and take the pain whilst with your fiancee. She still needs most of you as you were at least mentally. My partner and I had the best NYE cycling around PHI PHI island Thailand, her in joyous laughter, me in a chronic pain grin.
pain relief first followed by DX. followed by one day at a time. There is no easy way out but there is hope and your still relatively young.

Hi Steve,

Honesty - communication. I think it would be a good idea to have your fiancée accompany you to doctor appointments. She deserves to know what's going on and be able to ask questions firsthand, and together you can discuss answers & solutions, and plan accordingly.

Doc

I agree with Smith, as long as it is the correct doctor.
A specialist neuro in PN would be the best.
Any old GP isn't the type to take her along to see.

Thanks for the support, i'm feeling a little better today mentally. Ill try to keep focused on the one day at a time thing. I guess sometimes i feel as my fiance doesnt understand what is going on, like accepting a couples bowling night invitation, and then i have to reminder her... Overrall though she has been very supportive and has a huge heart. My mother has had parkinsons for 3 years now and about 5 months back it really hit her hard and she basically needs in home care. My fiance will go up and take care of her when i cant, and has helped out more with that lately.

I like the idea of taking my fiance with me to the RIGHT doctors' visits. So far im not sure if ive found one of those yet. Both neuros i saw basically wanted to do the wait and see approach without even running blood work. Went purely off EMG results and in-office neuro test.

I have an MRI reading today of my pelvis which hopefully reveals some kind of fixable abnormality, but im not getting my hopes up too much. I have another Neurologist appointment in 2 weeks with a new DR, that probably will be better since they are part of the University of Cincinnati neurology group.

Thanks,
Steve

I think the reason for the visit rather than the type of doctor. My wife & I may not accompany each other to our PCP for routine stuff (colds, shots, check-ups) but we do quite often when it relates to a significant health issue. I don't usually accompany her to her gynecologist either, but when she had an abnormal test result, she definitely wanted me there for follow-up. Acting as each others' advocates, we can take notes, ask questions, etc. that are difficult to do alone and under stress/pressure.

It's a decision for each couple.

Doc

6 months and no diagnosis
 

I know what it feels like to not be diagnosed. I am a 37 yr. old Mom of a 5 yr. old son. Life was going great for me last summer. Happy marriage, happy kid, happy life. Then one day I had burning and tingling in my feet. It went away and then came back a few days later, then quickly over a few weeks spread to my whole body and also with burning pain. i quickly went from being a avid exerciser to unable to barely walk.

First neruro basically thought I was crazy. 2nd believed me but could not find a diganosis after numerous tests, MRI, emg, etc. He then referred me to a 3rd neuro. He did more tests, and he said that although he can't give me a diagnosis of neuropathy, he does have alot of patients like me, who have similar neuropathy symptoms, but its not neuropathy. He said that it will probably be 10-15 years before the medical community comes up with a name for this condition I have, but that I'm not alone. He then referred me to a pain specialist. She also said she sees alot of patients like me, similiar symptoms, who have no diagnosis. She said the growing theory of the cause of this is that its an autoimmune response between different types of tissue within the body....for example, between nerve tissue and muscle tissue.

I'm not sure what to think of what the Dr's have said to me. I have finally accepted that for now, I may not get a diagnosis. and for me my main priority now is symptom relief and getting my life back on track. I started exercisisng again, by finding new ways to do it that don't aggrivate my pain. And once I'm feeling my pain is finally being managed and I"m living a somewhat normal life again, then I'll persue maybe going to Mayo clinic or Stanford to see what the real experts have to say.

I take my hubby to all my appointments with specialists. He is a great advocate for me and he also now better understands what is going on with me too. I encourage you to take your fiance with you....it make you feel like you aren't in it alone.

Hang in there, you aren't alone.