I can't handle another one

[Aura]

I am scared at the moment. Recently I have had a lot of new symptoms - I had a 6 day headache over Easter with visual disturbance and photophobia; For the last two days I have had a numb arm - feels dead like one of my mates has punched me in the side of the arm. The other night I got a sharp nervy pain down my right thigh and that made it hard to walk. I am so tired of late - I could sleep all day given the chance. I do have lesions in the white matter of my brain, my last MRI in 2007 said I had 10. I am going to get reffered by my neuro-psychologist to the local neuro. My last one said I would have either early onset dimensia or MS.

I already have crohns, asthma, diabetes, LERD, GORD, PCOS, Endo. I also have problems with my bladder, blood pressure.

Last year I got dx GORD and this year I got dx LERD - I just can't handle another one. It gets too hard to work and manage my health and to try and stay positive. When is enough enough? I am tired of being tired, tired or being sick and I do not need any more diseases!!!:sign0085::angry-banghead:

 

[Grumbletum]

Sounds like you have been through the mill a bit :-( But glad to hear that you will be seeing a new specialist. I've been looking into vitamin B12 deficiency as I've been feeling really fatigued and have had migraine headaches with the visual disturbances, and these can be symptoms along with tingling and numbness.
Might be worth getting a GP appointment to get these new symptoms checked out.

 

[Entchen]

Dear Aura, can't quite say anything except that I'm so sorry for you going through so very many struggles and want to send warm *hugs* of support.

 

[Dexky]

Sorry K! You sounded more hopeful in your metho thread. You just deserve so much better! I hope you get that soon!

 

[DustyKat]

Oh man Aura...

Do you think any of these symptoms may be due to the Methotrexate?

Good luck with the neuro doc and I hope it turns out to be nothing serious, you certainly do not need any anything else!

Sending loads of love and hugs across the ditch...:hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx

 

[Terriernut]

Aura, my goodness, you've been through enough already! I'm looking at your medicine list. I'm no Dr, but...Is it possible some of the meds are also causing problems as well? Has a Dr and pharmacist really looked at all of these put together?

I have hope that the symtoms you are now experiencing are vitamin deficiencies and drug interaction, and nothing else!

Hugs to you,
Misty

 

[Aura]

Thanks guys - I do appreciate your thoughts and ideas.

I get a bit scared - I think neurologists do that to me. When I saw one in 2004 (wtgn) I had an ANA of 1:640 I had a negative dsDNA.

They did not really look at SLE but he did ask my GP to check on me for symptoms of mixed connective tissue disease. Maybe it's time to get this sorted out.


My second neuro (hawkes bay) seemed to think I may have either ms or early dimensia.

Now I live in another city and need a new neuro - maybe I should stop shifting :biggrin:

I wonder if I will get my appointment before we head over to the UK...hard to tell with these things. I think getting some answers may sort me being scared and all, its just not knowing that does not help.

By B12 is ok a little low but not under the limit. I am on iron tablets to increase my ferritin as it was 13 and 20 is the minimum.

Sometimes a life of disease and progressive disease is not much fun and it gets me down.

 

[Keona]

Hi K
I dont blame you for feeling down. Sounds like you have a lot on your plate. I have a friend who was initially diagnosed with Crohn's disease and then endometriosis and also has diabetes. Have you ever been checked for Lupus? She seems to have a lot of diseases as well and it took them a long time to figure things out with her.
I wish you the best and hope they can help you. I also hope you find a good neurologist to help you with all this.
I hope you see some improvements soon
hugs
xo

 

[Aura]

Thanks, it quite helpful hearing of other people with multiple diseases and getting dx correctly or close at the very least. Thanks, its good to be sharing the frustration that comes with being a chronic, and the moments when I get a bit scared as well. I've got to admit it to someone - and I choose you guys

 

[lulu2]

Hi, you're not alone, I have a couple of chronic illnesses and it seems that everytime I see a doctor something new is diagnosed! My list is nothing compared to yours tho, but you have my deepest sympathy and empathy!

Keep battling on, it sounds like despite everything you're doing great!! You must be an incredibly strong person and don't let all this get you down! And try not to worry about what 1 neuro says..... he may well be wrong! Wait and see and try not to worry too much.

Much love
xxx

 

[lotte26]

Oh my god.. You poor thing, it's hard enough having one disease... But multiple?! man I feel soo terrible for you!

Sending big hugs from new Zealand, and try to stay positive, try and do little things each day that cheer you up. Even if it's just indulging in a nice bubble bath or moisturizing your hands... Painting your nails. It must be bloody hard but you are so strong for talking about it.

Big big big hugs for you, I hope the new specialist works out well

Xxx

 

[lotte26]

Oh my god I just saw you are from nz! Where abouts do you live in nz?

 

[Aura]

Hi

I was born in Wellington and lived in the Hutt, now I live in the Bay of Plenty. I like painting my nails, I collect OPI colours. I am going to having them shellac'd for my birthday soon:thumleft:

 

[lotte26]

oh cool! Do you know of any good GI's In Welly? I live there, but have had so much trouble finding a nice/decent/helpful one. I have a great one in chch who i am using, but would be nice to have a good one in welly... I wish i had nails to paint (On my fingers.) i bite mine like a maniac. But i like doing my toenails! OPI colours are good aye

Have a nice day Aura x

 

[Aura]

Nigel Stace is very good, based at Bowen Hospital as well as public system. Stay away from any in Lower Hutt, not good there. Nigel is very thorough, professional, ethical - he spends a lot of time with his patients and has a good ethic of care. just do not expect him to run to time. I used to phone and see how late he was running - the wait was always worth it with him. He has a great team of nurses at Bowen as well.

 

[sparkles]

awww no youve had a horrible time i cant believe how long your list of diseases is!! ahhhh! get well soon xxxxxx

 

[Aura]

Thanks Lulu and Sparkles for your thoughts, I appreciate them. I will phone the neuro tomorrow and make an appoinment, and see how soon or not I can get in.

 

[Aura]

neuro visit

I phoned the neuro for a visit and they said they had an opening at 10 that morning. So I grabbed all my meds and scan and shot off in the car.

He was really interested in me, in that I am a collector of some many conditions. He thought I would be great for his class as I am complicated. On the good note no ms or demensia which is great news. Yes to the fact that I will keep accumulating disesases and will be in with the MTCD crowd. He said I also have chronic migranes and need medication for this and my bladder. He wants my thyroid tested as well in case of hyperthyroidism. My blood pressure is still out of whack 145/100 - His main advice was that I need to reassess how much I am working and that I should be working part time rather than full time and reducing stress. He is pleased I am on the mthx as this will be good for arthritis and MTCD as well.

I am a worker, I love to work I am not sure how I feel about this. I have such a strong drive and motivation to want to work. I find it hard to slow down and relax. I do not do this at all well. :voodoo:I'll post this in my mthx thread as well.

 

[Astra]

Hiya Aura

Im so glad you're not dementing!
It's really hard when you're a worker, I work hard too, but docs just keep telling me to go part time, slow down, relax, take it easy blah blah bloody blah!
But I can't! I thrive on wizzing around!
If you can't slow down Aura, take care instead!
I've got relatives in Wellington, be dead funny if you knew them!
xxx

 

[Terriernut]

Aura, I'm a worker too! I think however, I tie my self esteem into what I'm doing at WORK, not on who I am as a human. Something to watch out for.

But, you wont have work if your body gives out will ya!? (i'm wagging my finger at myself now too)

Take care of yourself first and foremost, and the rest will follow.

:hug:
Misty

 

[tiloah]

I'm glad to hear no MS or dementia. Did he have any suggestions for what *has* been causing your symptoms though?

Reducing stress. Aahhh so much easier said than done!

 

[billyjoel]

Aura, wow, I feel for you too!!!

Hey, I read through your medications list, and I wanted to ask if you have ever used Lyrica? I don't know if it is approved in NZ or not but it might be worth asking about? My wife has had a lot of the issues you are describing, except for lesions on the brain, but we have not had a MRI done on her.

She has had strange visual things happen to her, she has had almost daily headaches her whole life, she has had the weird face numbness stuff, and she has also had a lot of gastro problems. She also has been diagnosed with Fibromyalgia; which affects the nervous system.

Since starting Lyrica she still gets headaches but not nearly as much in the past, and also she has stopped having the body aches, and she has a lot more energy. Just a suggestion that might be worth exploring.

I have Crohn's Disease, between she and I, we make a perfect pair

 

[Aura]

Hiya Aura

Im so glad you're not dementing!
It's really hard when you're a worker, I work hard too, but docs just keep telling me to go part time, slow down, relax, take it easy blah blah bloody blah!
But I can't! I thrive on wizzing around!
If you can't slow down Aura, take care instead!
I've got relatives in Wellington, be dead funny if you knew them!
xxx

I love being busy!! I'm like the energiser bunny! Thanks Joan, I will try and take care. What part of Wellington are your rellies from? It would be funny and not unusal in NZ if I knew them, as this is a small country.

 

[Aura]

Aura, I'm a worker too! I think however, I tie my self esteem into what I'm doing at WORK, not on who I am as a human. Something to watch out for.

But, you wont have work if your body gives out will ya!? (i'm wagging my finger at myself now too)

Take care of yourself first and foremost, and the rest will follow.

:hug:
Misty

Thanks Misty

We can wag our fingers at each other then Thanks for understanding the strong need to work. my neuro suggested that I was losing autonomy due to my health

 

[Aura]

I'm glad to hear no MS or dementia. Did he have any suggestions for what *has* been causing your symptoms though?

Reducing stress. Aahhh so much easier said than done!

Yes that is so true. How often to specialists tell us to reduce stress, live a life with no stress - as if that was possible...

I have an autoimmune diathesis with a positive ANA, [my kitten is trying to help type this response as well :rof: he is all over me and the keyboard] this brings in to the picture Mixed Connective Tissue disorders. But I also have many illness outside of this picture as well asthma, crohns, diabetes. I think I just need to take one day at a time and one illness at a time. Manage what I see and feel. In the letter from the neuro he also said it was possible I may a psychiatric disorder or a sotomaform disorder, I am so please he did not say this to my face, as I am not sure my reponse would have been polite.
:ylol2:

 

[Aura]

Aura, wow, I feel for you too!!!

Hey, I read through your medications list, and I wanted to ask if you have ever used Lyrica? I don't know if it is approved in NZ or not but it might be worth asking about? My wife has had a lot of the issues you are describing, except for lesions on the brain, but we have not had a MRI done on her.

She has had strange visual things happen to her, she has had almost daily headaches her whole life, she has had the weird face numbness stuff, and she has also had a lot of gastro problems. She also has been diagnosed with Fibromyalgia; which affects the nervous system.

I do not know Lyrica, I will google it. It sound as though her and I share many symptoms. I will talk to my gp about fibromyalgia, thank you :ysmile:

 

[Entchen]

So some partial relief for you, hearing it's not MS/early onset dementia. Good, good good.

I apologize for missing this update 3 days ago - not sure how it happened as I have been so concerned for you and waiting to hear about outcomes.

When it's work you love, those hours each day can be your break from thinking about illness and from living illness. For some people, moving to part-time or not working at all would be *more* stressful. I'm not some people, so I do not share this particular experience, but I respect how important it can be for you. I agree with you that the satisfaction of full-time work can contribute to your well-being.