Fed up with my life being sick , 2013 I start getting sick , start having check up . Eye screening was the first , diabetes, high blood pressure, Idiopathic Intracranial Hypertension , kidney infection , Anemia , cyst in the lungs and the most hard one is lymphoma cancer ☹️ I thought I’m getting better but I was wrong . One week ago been diagnosed with rheumatoid arthritis another illness on top of my illnesses ☹️😔 I don’t no what to do now with my self .
With all of this illness how I can go back to work !!! Sometimes I think that I’m more worth gone than I’m I lived. I don’t no ☹️
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Caro06
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hi caro 06 i have had a heart problem since 2003 ashmah 25 years.in 2011 found i had testicular cancer. during the op i stopped breathing so the tested for sleep apnear put me on mask. i had an op to remove polyps in 2015 they found tumer under my eye they operated to remove that also in 2015 i found out i was diabetic . but now i have had eyes tested they found background retinopathy last week so now got to sort that out .as well as living with mussel pain . so i no how you feel .i also have rheumatoid arthritis . you should never think your better gone i just got all clear from cancer 5 years later you have to think positive. all the best stay strong
Hi! Antbeech1963 it’s just getting harder and harder to be strong, I’m not happy that I can go back to more yet because of all this illness it’s not just one it’s to many ☹️ I feel so sorry for my kids that I can do to much things with them , they are looking after me , than looking after them ..
I hope u sort out the other illness u have . U take care
HI caro yes its hard you have young kids mine are grown up 21-31 2 girls 2 boys but mine where young when it started as well i manage to get through it but now same as you to many problems at once what is causing the most pain its hard to tell. but you take care ask more ? to your doctors because they don,t like to take responsibility just say you will get second epinion ask for help as much as possible so you take it easy don,t feel guilty your kids will understand take care
you sure are going through alot, you are a survivor! I have a question for as I have alot o crazy symptoms yet to be diagnosed. One symptom Intracranial Hypertension which my neurologist thinks i might have but is scared to do a lumber puncture because it can cause alot of harm I guess. Nothing has turned up on the normal MRI and CT angiogram, so I am wondering how you got diagnosed. Basically I have been in bed for 4 months, I have right temple muscle that swollen (not tmj), if i go and try do anything like go to the store I get nauseous dizzy, and then the light and sound become strange and my body feels light sometimes, get tension headache and all head is sore to touch and lost some vision in right upper eye, my hears get plugged like on a plane. I am just asking because this seems pretty rare, and I am afraid to do anything now, any info would be appreciated and thanks
felt , and they find out that I have iih with eye screening and a lot of headaches.. I have a lot of lumber puncture done , and I have vp shunt as well and I Papilledema As well . And a lot of other illnesses, I went through lymphoma cancer a well last year , I’m diabetic, high blood and kidney problem too . 6 months ago bin diagnosed with arthritis too . That’s way something I don’t no anymore what to do .. ☹️😞🤷♀️
I hope and pray all of us here will feel much better and be heal for all the illness we have .
The most common symptoms of IIH are: severe headache, papilledema, transient visual obscuration’s (temporary loss of vision), diplopia (double vision) and decreased visual acuity, pulsatile tinnitus ("whooshing noise" in the ears in time with the pulse), pain behind the eye and with eye movement.
Other symptoms reported by sufferers include but are not limited to: nausea, vomiting, fatigue, photophobia (dislike of and pain caused by bright light), problems with balance and spatial awareness, aphasia (difficulty using or understanding words), disorientation, loss of short-term memory (sometimes also long-term memory loss), confusion, feeling 'spaced out', decreased depth perception and peripheral vision. Some children are often too young to report their symptoms adequately and can present with many nonspecific symptoms such as mood swings and more. Although many sufferers have symptoms in common, each sufferer is an individual and should be treated accordingly.
vp shunt that's crazy, when i looked up what this. My question is, there was no danger doing a lumber puncture when you had IIH? like how did you get diagnosed, and should I be very careful about doing stuff like attempting to go for a walk and stuff till I get treated?
Every stuffed they do in ur body is always some danger but u just need to think 🤔 positive and believe on the consultants , doctor and nurse . Lumber puncture it will help with the pressure in ur brain and this will help for the symptoms u having . When they diagnosed me , I have a eye screening done and I have papillodema swelling in the back of my eyes , a lot of headaches, blurred vision and ringing in my ears. That’s the problem u getting an stable on ur feet , that’s why u need to be careful.i hope u feel better. Don’t be afraid u just need to listen to ur doctor and ur body . U will know it in u how u will feel . Just message me if u need someone to talk too 😊
thanks for the advice but i think my neurologist is afraid it could be a low pressure headache, so lumber puncture could cause harm I guess..she wanted me to see if i feel dizzy on feet or good lying down, it's so hard to figure it because I am feeling crappy all the time..ophthalmologist said eyes ok, except right eye and he just ruled it out i need reading glasses, but neurologist thought it was strange. sorry i have couple more questions because so when they found swelling in the eye, just from regular test they when they dilute your eyes or was it a special test? what i was getting at, can you be active at all with like go for a job or is that dangerous? i dont want to go try and find out the hard way is all
I need to stop working because my symptoms is really bad , I almost lost my sight. That’s why they need to put a lp shunt first but it didn’t work for me , so they need to change to vp shunt .. my pressure was always high ☹️ . When doing the lumber puncture. Always need a long stay in the hospital and I have other illnesses too . , the worst one is the lymphoma cancer last year , when though chemotherapy. So now still struggling with everything. Sometimes I don’t no anymore what illness it giving me all the pain .
ok thanks, you are going through so much but at least you have your strong spirit! Alot of people think i am sick, but nothing compared to what you're going through! did you feel ok just lying down, and had problems like when you were on your feet? i am just trying to see if you have what i do..i am getting endoscopy and gastroscopy next weekend to try to expkain why i had so much tar stool for month n half, i am afraid this head pressure thing is not going to be good when they pu te to sleep to do the procedure..i tell you that Vpshunt sounds crazy when i read about it
hey i had another question for you, because i am having s much pressure around one side of my head in the temple area and eye and little bit on the jaw. did you have this and did your temple muscles happen to swell at all?
Hi - sorry to hear about all your illness - I'm another one that has so much wrong I feel my body let's me down. Almost everybody on this site would say the same about themselves. Don't be thinking that you're better gone - your kids wouldn't agree. You have to change the way you think. I've been through the 'what's the point in even getting up in the morning?' or 'i m might as well not be here'. However I'm glad I am - I have a wonderful family who are all prepared to support me in different ways - just as I support them in any way I can, I can walk a little way on crutches, I can still go on holiday - instead of camping in a tent I sleep in a bed my husband has created in the back of our camper van. I didn't want my son to see me ill, but when he did he used all his first aid skills and made me feel better. When I apologise he said 'don't you dare apologise for being ill, your my mum who saw me through childhood illness etc.'. I haven't been able to work since 2011. I've used my time in different ways - some sleeping on morphine(!), reading books, watching TV, playing Scrabble etc. And now I've started doing crafts ,(I used to knit, but no longer have the concentration). Most of all I've learned to laugh at myself, which makes others laugh with me.
Your life hasn't ended, it's just changed a bit. Good luck with everything x
thanks Morphalot my kids are the same we all help each other the same as you. take it easy it,s good to get away just to relax. all the best :-} antbeech
Caro06 Hi, My thoughts and prayers and blessings are with you, I am so sorry that you are going through all this. It's hard and trust me I understand completely. Every doctors visit yes I may show improvement in one thing a bit, but they find 2 more. It's hard. I started with a slipped disc Aug 07, Surgery that failed and left me in wheelchair 8 months. During the time between slip and surgery legs began to swell. Then diabetes with A1c of 14.6. 2008. Then Hereditary Hyperlipedemia Cholesterol 892 and Triglycerides 1625 battled that till now still battle but now 282 and 313 respectively. But it has caused mild to moderate blockages in Aorta mid abdomen, carotid, arteries in back. My legs turn blue , hurt and swell, busted veins no explanation, all studies are age appropriate (57). I have peripheral neuropathy and autonomic neuropathy. Liver 23cm normal 8-11, so they test, I'm NASH 1 Fibrosis 3. Enlarged spleen, pancreatic duct and gallbladder. And they find a 1.0cm renal (left kidney pole) cyst or mass. In 18 mo now 1.5cm by CT had US Tuesday we shall 6 the CT was June 5, I do those every 6 months to follow abdomen. I hurt all the time now, on pain management. Use wheelchair and Lofstrand Crutches. Lower Lobe Left Lung collapsing so have scarring and Alectesis. Sleep 02 monitor not breathing right at night. I can keep going, but you get the idea. It's been 11 years now. And they keep adding , Oh let's not forget tricuspid and mitral valve regurgitation and enlarged atrium, atherosclerosis in my heart. I see a PCP, Endocrinologist, Psychiatrists, Hepatologist, GI, Kidney so many doctors stirring the pot, each time something new is added. This is long I know but I want you to see your not alone, there are so many of us and we fight, survive, good days few, bad days many, limited, medication after medication, we all get fed up, worried, scared, angry, not normal, depressed, sad, my husband of 26 years couldn't have a sick wife, four years ago he walked out, took everything, we had left me broke and has never given me a dime. Not even some to me , don't know where he is, has seen his 1st grandson or grandchild for that matter at all. Hardly if ever messages his daughter's. All of this has hurt me in so many ways. We have to keep fighting, find the right doctors for our needs that listen, be our own advocates. But if you need to talk I'm here for you to listen and to hear. Best wishes and prayers and blessings....Betty
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depression ,pain ,and fed up!
16 months in with sciatica & fed up!
Fed up with doctors.
Fed Up..
