The Waiting Room -Off topic chat thread

Gremlinertia

So i've pondered the idea of a thread that anyone on this forum can post in as there can be a lot in common no matter what your ailment and perhaps chatting to new people might be a nice way to vent in a place where there may be more understanding people.. I'm aware it may sink without trace but sure i'll take the risk

Gremlinertia

So, my introduction, I'm Grem, thirty something :rolleyes: Diagnosed with borderline personality disorder a few years ago and also have complex regional pain syndrome, many treatments for both over the years and ongoing

I'm Persepoly. I like cake and pizza and beer and cuddles.

:pac:

TherapyBoy

I'm TherapyBoy, diagnosed with craniopharyngioma brain tumour in 91. Have had brain surgery 10 times in the last 26 years, pituitary removed in 93, two ommaya reservoirs implanted in my head & one bout of radiotherapy in 96. Tumours are benign but like a bad weed keep growing back, always have & barring a miracle always will. Also suffer from a condition known as hypokalemic periodic paralysis which means if I eat food high in carbohydrates or exercise too much when I wake up the next morning my muscles don't work & I can't move at all. Have been on full-time medication since primary school & will remain so until I die.


Oh, I don't drink alcohol but I like cake, pizza & cuddles too!

Graces7

Graces7 here. Became ill in my 20s and as all tests came back negative, mental illness was assumed and I was put through all the mental health system in the uk, then spitted out as just useless.... left on high doses of benzos anti d's and pain killers for the inexplicable joint and muscle pain.

Three decades later through a sheer miracle of God, the real diagnosis arrived. M. E. While I knew it was a neglected illness few drs seem to believe in, I built on that, came off all meds and am managing the illness myself now. Not letting anyone push me around.

I know the illness and I know myself. Which is surely the only basis of any healing or living with disability.

I spend much of each day abed as that is the only place I am at all comfortable; a day out or a shopping trip means a real rest the day before and sinking shattered into bed when I get in, but it is worth it.

Use only tylex for pain. raynauds is agony!

I am heading for 80 now... Love life and all things!

Moved house a week ago and it nearly killed me as I knew it would. But I did it.

CathyMoran

I am a mother of two young children, a type 1 diabetic since I was 10, a 10 year esophageal cancer survivor, have sarcoidosis, pernicious anemia, regular anemia, thyroid issues and kidney disease.
I love my children to bits!

failinis

Hello, I am a young student currently at uni in the UK.

I have a yet to be diagnosed genetic condition, assumed to be connective tissue (but all tests have come back negative) so assumed to be a new variation on Marfan or Beals Syndrome type thingy.

This effects me all over, scoliosis, costochondritis, hips not 100% aligned, raynuards syndrome (snap Graces7:D ), joint pain (waiting to get rheumatoid arthritis confirmed), hips seem to self dislocate a lot. My limbs are longer than they should be and the bones are weird. A lot of potential issues in future.
Very poor healing of any injuries, all scars go very wide.

I also have bad digestive issues, suspected IBS or chrones but no dr is seeing me about this at the moment. Daily nausea and its hard to eat.
Had stomach ulcers in past which take ages to heal, I feel one is making a comeback recently.

Some heart mummers and palpations - unknown causes suspected to be linked to the genetic stuff.

Sleep "seizures" which are more like tremors. Said not like epilepsy but its either linked to ataxia or just "one of those things" or stress related.
Not had a full sleep study done but I suspect its like nothing.

Referred nerve damage pain from exploratory heart surgery which is quite bad, I think one of the worst pains I get sometimes. Makes me feel like my left collarbone has snapped, but of course its just my nerves getting confused. :mad:

I have an ovarian cyst and I need simple surgery over summer to confirm that my dr thinks I have endometeriois or whatever its called.

I also have unexplained ataxia and worsening nerve damage (said to be unlikely linked to raynuards) in legs, feet and hands and hearing issues which are suspected to be something called Kings Koffburg syndrome or something?
Was told suspected brain tumour but thank god my scan was clear - but they need to cross out some genetic ataxias and also rare genetic metal issues.

Still waiting for a lot of blood tests in regards genetics.

I have never went to a dr about mental health but I suspect I have depression and anxiety.
Also have dyspraxia and dyslexia etc

I have had a lot of issues of drs dismissing me and ignoring issues and just not taking me on. Its very disheartening and you feel like maybe you are insane and are hypochondriac or "the pains not real" but it is. Awful.

I just want answers - but need to be prepared incase it is bad answers.

---

This is a nice thread idea grem

Graces7

failinis wrote: »

Hello, I am a young student currently at uni in the UK.

I have a yet to be diagnosed genetic condition, assumed to be connective tissue (but all tests have come back negative) so assumed to be a new variation on Marfan or Beals Syndrome type thingy.

This effects me all over, scoliosis, costochondritis, hips not 100% aligned, raynuards syndrome (snap Graces7:D ), joint pain (waiting to get rheumatoid arthritis confirmed), hips seem to self dislocate a lot. My limbs are longer than they should be and the bones are weird. A lot of potential issues in future.
Very poor healing of any injuries, all scars go very wide.

I also have bad digestive issues, suspected IBS or chrones but no dr is seeing me about this at the moment. Daily nausea and its hard to eat.
Had stomach ulcers in past which take ages to heal, I feel one is making a comeback recently.

Some heart mummers and palpations - unknown causes suspected to be linked to the genetic stuff.

Sleep "seizures" which are more like tremors. Said not like epilepsy but its either linked to ataxia or just "one of those things" or stress related.
Not had a full sleep study done but I suspect its like nothing.

Referred nerve damage pain from exploratory heart surgery which is quite bad, I think one of the worst pains I get sometimes. Makes me feel like my left collarbone has snapped, but of course its just my nerves getting confused. :mad:

I have an ovarian cyst and I need simple surgery over summer to confirm that my dr thinks I have endometeriois or whatever its called.

I also have unexplained ataxia and worsening nerve damage (said to be unlikely linked to raynuards) in legs, feet and hands and hearing issues which are suspected to be something called Kings Koffburg syndrome or something?
Was told suspected brain tumour but thank god my scan was clear - but they need to cross out some genetic ataxias and also rare genetic metal issues.

Still waiting for a lot of blood tests in regards genetics.

I have never went to a dr about mental health but I suspect I have depression and anxiety.
Also have dyspraxia and dyslexia etc

I have had a lot of issues of drs dismissing me and ignoring issues and just not taking me on. Its very disheartening and you feel like maybe you are insane and are hypochondriac or "the pains not real" but it is. Awful.

I just want answers - but need to be prepared incase it is bad answers.

---

This is a nice thread idea grem

I know. Believe me I know. Strange for me reading posts where folk actually HAVE a " respectable" diagnosis .

AITM is a label indeed...

Here in Ireland I have met only GPs who have never really heard of M.E and sweep it aside as trivial and irrelevant.

So I do not pursue this now. I KNOW I am ill and I know how to cope and get some enjoyment and fulfilment from life;at my age ( heading for 80) that matters.

I left all the M.E support groups as folk were going from one dr to another seeking what is not there. Wearing themselves out.

The last GP I had in the UK actually took a proper history.my illness started with a bad flu which is classic M.E

He wrote under my notes " Was never mentally ill; it was always M.E"

Cannot tell you how good that felt.. So then I left the country.

Raynauds is an auto immune thing like so much of M.E. There are tests now but drs do not seem interested. They panicked when the Raynaud's got so bad and tested for lupus.

So I am content to manage it myself. Of course I am old and not needing to find work or raise a family etc.

I almost never go near a dr now!

Turtle_

failinis wrote: »

This effects me all over, scoliosis, costochondritis, hips not 100% aligned, raynuards syndrome (snap Graces7:D ), joint pain (waiting to get rheumatoid arthritis confirmed), hips seem to self dislocate a lot. My limbs are longer than they should be and the bones are weird. A lot of potential issues in future.
Very poor healing of any injuries, all scars go very wide.

I also have bad digestive issues, suspected IBS or chrones but no dr is seeing me about this at the moment. Daily nausea and its hard to eat.
Had stomach ulcers in past which take ages to heal, I feel one is making a comeback recently

....

Still waiting for a lot of blood tests in regards genetics.


I have had a lot of issues of drs dismissing me and ignoring issues and just not taking me on. Its very disheartening and you feel like maybe you are insane and are hypochondriac or "the pains not real" but it is. Awful.

I just want answers - but need to be prepared incase it is bad answers.

---

This is a nice thread idea grem

I'm late 20s, dx with ehlers danlos syndrome, to which I believe the GAD is secondary.

Failinis, a lot of what you described is very similar to EDS, you may get some support from an eds support group. It's more common than doctors believe. Actually a dr friend of mine showed me a medical text saying eds patients generally mistrust doctors because of how long it takes for diagnosis and the amount of dismissing of their issues in the meantime. So even if you don't have it, you'll definitely find people who can relate. And because it's collagen that's not made correctly, it can affect every part of the body (frustrating because some drs think it only affects skin and joints). Incidentally, there's no genetic test for the most common type. It's symptoms and testing and ruling out the other types that leads to diagnosis.

Gremlinertia

Slowly giving into the idea that I'll have to badger the pain clinic a bit to get some help, I'm very nervous of phone calls though.. Ugh.

Graces7

Gremlinertia wrote: »

Slowly giving into the idea that I'll have to badger the pain clinic a bit to get some help, I'm very nervous of phone calls though.. Ugh.

Sympathy. My only contact with my GP is to write asking for a 3 month repeat prescription. If i can get them on email , great. If not...

Graces7

Turtle_ wrote: »

I'm late 20s, dx with ehlers danlos syndrome, to which I believe the GAD is secondary.

Failinis, a lot of what you described is very similar to EDS, you may get some support from an eds support group. It's more common than doctors believe. Actually a dr friend of mine showed me a medical text saying eds patients generally mistrust doctors because of how long it takes for diagnosis and the amount of dismissing of their issues in the meantime. So even if you don't have it, you'll definitely find people who can relate. And because it's collagen that's not made correctly, it can affect every part of the body (frustrating because some drs think it only affects skin and joints). Incidentally, there's no genetic test for the most common type. It's symptoms and testing and ruling out the other types that leads to diagnosis.

"Diagnosis of exclusion" again... That is what they say re M. E. And I agree totally re support groups. They helped me get off benzos.

Turtle_

Graces7 wrote: »

[/B]


"Diagnosis of exclusion" again... That is what they say re M. E. And I agree totally re support groups. They helped me get off benzos.

It's just that they haven't identified a single gene yet that causes that type. All other types can be tested for. It's probably only a matter of time, because skin biopsies show altered collagen structures. Fingers crossed (and double crossed Haha) for the gene to be identified in the future.

It's a bit of a nuisance being exclusion, because almost every symptom can be caused by something else. In my case I was just straight away diagnosed as a child because I'm so textbook type 3. If you take all the symptoms together and it's undeniably the syndrome. The main treatment for the type I have is prophylactic - exercise and stay strong which will minimise dislocations and pain. Other than that, it's a case of put up with the pain.

Graces7

Turtle_ wrote: »

It's just that they haven't identified a single gene yet that causes that type. All other types can be tested for. It's probably only a matter of time, because skin biopsies show altered collagen structures. Fingers crossed (and double crossed Haha) for the gene to be identified in the future.

It's a bit of a nuisance being exclusion, because almost every symptom can be caused by something else. In my case I was just straight away diagnosed as a child because I'm so textbook type 3. If you take all the symptoms together and it's undeniably the syndrome. The main treatment for the type I have is prophylactic - exercise and stay strong which will minimise dislocations and pain. Other than that, it's a case of put up with the pain.

Yep, put up etc sounds familiar...I decided when talking to folk who were putting all their hopes on a cure being discovered that there was no time like NOW so I was going to accept that and just LIVE. I am blessed to still be alive so am putting what I can back into the needs of others.

Just now so little stamina after the move; takes weeks to recoup .. just enough left to take the dog out in the garden then BED for the night.... wind is howling and snug here .. the tylex helps at night...

Graces7

Turtle_ wrote: »

It's just that they haven't identified a single gene yet that causes that type. All other types can be tested for. It's probably only a matter of time, because skin biopsies show altered collagen structures. Fingers crossed (and double crossed Haha) for the gene to be identified in the future.

It's a bit of a nuisance being exclusion, because almost every symptom can be caused by something else. In my case I was just straight away diagnosed as a child because I'm so textbook type 3. If you take all the symptoms together and it's undeniably the syndrome. The main treatment for the type I have is prophylactic - exercise and stay strong which will minimise dislocations and pain. Other than that, it's a case of put up with the pain.

Yep, put up etc sounds familiar...I decided when talking to folk who were putting all their hopes on a cure being discovered that there was no time like NOW so I was going to accept that and just LIVE. I am blessed to still be alive so am putting what I can back into the needs of others.

Just now so little stamina after the move; takes weeks to recoup .. just enough left to take the dog out in the garden then BED for the night.... wind is howling and snug here .. the tylex helps at night...

exercise is anathema with M.E.

failinis

Graces7 wrote: »

He wrote under my notes " Was never mentally ill; it was always M.E"

Cannot tell you how good that felt.. So then I left the country.

So I am content to manage it myself. Of course I am old and not needing to find work or raise a family etc.

I almost never go near a dr now!

Had that issue a lot, had a stomach pain ignored for 3 years until it nearly ruptured (ulcer) because "you are a teenage girl its an eating disorder you are not in pain you are lying to avoid food" or "its women issues" when in fact no your stomach is not near your uterus/ovaries etc. Vomiting blood and turned away from the GPs begging for an appointment etc. :mad:

Had severe chest (heart?) pain for honestly, almost all my life, was seeing drs aged 3 about it as I would cry and tell mum it hurt.
They said to me aged 14-15 or so "Well, you are a young girl, maybe the pain is breast development, or maybe its all in your head, these things happen?"
I was brushed off. I ended up continuing to collapse with chest pains and breathlessness, finally told I had severe costochondritis.
I cried when that dr told me because I was not insane. I thought I was crazy.

Turtle_ wrote: »

I'm late 20s, dx with ehlers danlos syndrome, to which I believe the GAD is secondary.

Failinis, a lot of what you described is very similar to EDS, you may get some support from an eds support group. It's more common than doctors believe. Actually a dr friend of mine showed me a medical text saying eds patients generally mistrust doctors because of how long it takes for diagnosis and the amount of dismissing of their issues in the meantime. So even if you don't have it, you'll definitely find people who can relate. And because it's collagen that's not made correctly, it can affect every part of the body (frustrating because some drs think it only affects skin and joints). Incidentally, there's no genetic test for the most common type. It's symptoms and testing and ruling out the other types that leads to diagnosis.

Yeah, I have see A LOT of genetic specialists and they said even though there is over lap with EDLS in symptoms that it does not seem to be collagen in me that is messed up but the Fibrillian (which indicates a more Marfan/Beal style illness).
However Marfan and variations are negative in me (and a sibling who shows milder signs than me) so they feel its maybe a new variation as I do not even match marfan too closely but its the one I am most like?
Very similar though? I likely share may of the same issues with you.

My joints are very stiff and inflexible (besides my slipping hip).
My skin is not "fragile" or tearing and was called "especially inflexible" in notes - but when I get cuts it heals like keloids very badly.
I know there are about 8 or 9 types with different symptoms but I don't seem to match the "usual" ones.
I will try and look into any support groups locally though.

The distrust is very high in me, not surprising if you go to someone in pain and are told it is all in your head.

Graces7 wrote: »

Yep, put up etc sounds familiar...I decided when talking to folk who were putting all their hopes on a cure being discovered that there was no time like NOW so I was going to accept that and just LIVE. I am blessed to still be alive so am putting what I can back into the needs of others.

I would really like to have whatever is wrong with me diagnosed because I have 6 young nieces and nephews and the thought of them having the illness and not being able to screen their eggs/sperm in future is horrible.
It seems to be a dominant mutation they think on paternal side, and they think some siblings are carriers etc.

If I was told "its just an undetermined connective tissue disorder - we will scan your aorta yearly and thats about it" that would have been fine, but now I have nieces and nephews and the fact it could be dominant is changed my point of view recently.

CathyMoran

My spouse had crohns and was told that it was imaginary for 10 years, by the time he was diagnosed he was incredibly ill but he spent most of his teenage years with chronic fatigue and in extreme pain.

With esophageal cancer I found it incredibly difficult to be diagnosed because of my age at the time and was only diagnosed in the end because my then boyfriend (we married 2 weeks post chemo) asked his consultant to see me as a favor. I was told that it was all in my head. I am so lucky to be still here even if I live every day with the consequences of the chemo and surgery.

The sarcoidosis was found by accident at my 18 month post treatment tests where they thought that the cancer had spread to my liver but instead found sarcoidosis. I have never done anything about it or been so pleased to have an illness as the other thing that it could have been would have been far worse.

Graces7

CathyMoran wrote: »

My spouse had crohns and was told that it was imaginary for 10 years, by the time he was diagnosed he was incredibly ill but he spent most of his teenage years with chronic fatigue and in extreme pain.

With esophageal cancer I found it incredibly difficult to be diagnosed because of my age at the time and was only diagnosed in the end because my then boyfriend (we married 2 weeks post chemo) asked his consultant to see me as a favor. I was told that it was all in my head. I am so lucky to be still here even if I live every day with the consequences of the chemo and surgery.

The sarcoidosis was found by accident at my 18 month post treatment tests where they thought that the cancer had spread to my liver but instead found sarcoidosis. I have never done anything about it or been so pleased to have an illness as the other thing that it could have been would have been far worse.

My eventual diagnosis was bizarre.I lived in a very small remote place and the GP kept sending me to hospitals etc that had no viable connection to my symptoms..

So a big city UK hospital and I am seen by several consultants. The gynae says it is all menopausal and prescribes HRT... The psych says it is all depression and prescribes anti ds... The rheumatologist says fibromyalgia and prescribes painkillers.. None of them have any idea what the others have prescribed or that I am already on benzos etc etc et.
The consultant physician in charge votes for post viral fatigue ( had had several throat infections) And when I ask for a second opinion tells me I have had 4 already and should be better now

On the ferry on the way home, I mention post viral fatigue to a neighbour and he utters the magic words M.E and the mystery is solved. By then I have the internet...

In the last year three drs I have had contact with have actually literally never heard of M.E .. One asked me if I knew what M.E stood for,so I reeled it off.

Caringbear92

Does anyone know if mild scoliosis can cause one to be considered 'unfit' for work in a pharmaceutical company as a QC analyst?

I just had a medical exam and was wondering if this could cause me to fail it.

failinis

Caringbear92 wrote: »

Does anyone know if mild scoliosis can cause one to be considered 'unfit' for work in a pharmaceutical company as a QC analyst?

I just had a medical exam and was wondering if this could cause me to fail it.

I had no idea, but if it is mild, so long as you can get enough breaks to like stretch your back and a comfortable chair etc there should be no reason.

Gremlinertia

Trying to improve office ergonomics, meeting resistance of course because spending money isn't in employers interest :rolleyes:

Graces7

Gremlinertia wrote: »

Trying to improve office ergonomics, meeting resistance of course because spending money isn't in employers interest :rolleyes:

In truth the only comfortable seat I know is my car driving seat. Supports in all the right places.. Or in bed the way I arrange the pillows... But the car is wonderful

failinis

Gremlinertia wrote: »

Trying to improve office ergonomics, meeting resistance of course because spending money isn't in employers interest :rolleyes:

Funnily enough I just got a call from a "ergonomic" chair specialist who is coming to see my desk set up and the Uni is going to pay for me to get a comfortable chair. I am shocked at how they actually are trying to help.

I would like to think employers would do the same but of course they just want people who can just get on with everything seamlessly

Gremlinertia

failinis wrote: »

Funnily enough I just got a call from a "ergonomic" chair specialist who is coming to see my desk set up and the Uni is going to pay for me to get a comfortable chair. I am shocked at how they actually are trying to help.

I would like to think employers would do the same but of course they just want people who can just get on with everything seamlessly

Some places are good, i'm a sub contractor so in no man's land with this sort of stuff. I have some stuff i bring with me to sites to help like lumbar support for chairs etc. Just feeling like a whinge because i'm having a bad run of days

embee

I'm embee, I just turned 36 and I am living with MS. I was diagnosed in April 2014 and commenced on an injectable medication. That kept me relatively well until I had an anaphylactic reaction to it after being on it for eight months. Had to stop that medication immediately and start on a pill, which didn't work at all and made me quite ill. MRI after I'd been on it for four months showed multiple new lesions. In August of 2015 I started on a monthly intravenous infusion. This coincided with me going into a severe relapse that left me immobile and in hospital for 10 weeks. They were pretty sure it was a brain tumour but the brain biopsies I underwent confirmed it was "just" MS and nothing more sinister. I had five sessions of plasma exchange to clear antibodies from the plasma. I had to learn how to walk again. I got home for Christmas and New Year, then in February 2016 I went to the National Rehabilitation Hospital for seven weeks as my walking was crap. Am now on a different infusion therapy, one you get once a year. I had that in July as I had a relapse whilst on the previous infusion and my neurologist said I shouldn't be relapsing less than a year into tysabri, so I was taken off it. Am sort of on the last chance saloon on terms of medication, there isn't an effective drug beyond what I'm on now. Let's hope it works, eh?! I am a midwife but haven't worked since the relapse happened. I also Mammy to an almost 11 year old girl. Life is great, refusing to let MS get the better of me!

Graces7

embee wrote: »

I'm embee, I just turned 36 and I am living with MS. I was diagnosed in April 2014 and commenced on an injectable medication. That kept me relatively well until I had an anaphylactic reaction to it after being on it for eight months. Had to stop that medication immediately and start on a pill, which didn't work at all and made me quite ill. MRI after I'd been on it for four months showed multiple new lesions. In August of 2015 I started on a monthly intravenous infusion. This coincided with me going into a severe relapse that left me immobile and in hospital for 10 weeks. They were pretty sure it was a brain tumour but the brain biopsies I underwent confirmed it was "just" MS and nothing more sinister. I had five sessions of plasma exchange to clear antibodies from the plasma. I had to learn how to walk again. I got home for Christmas and New Year, then in February 2016 I went to the National Rehabilitation Hospital for seven weeks as my walking was crap. Am now on a different infusion therapy, one you get once a year. I had that in July as I had a relapse whilst on the previous infusion and my neurologist said I shouldn't be relapsing less than a year into tysabri, so I was taken off it. Am sort of on the last chance saloon on terms of medication, there isn't an effective drug beyond what I'm on now. Let's hope it works, eh?! I am a midwife but haven't worked since the relapse happened. I also Mammy to an almost 11 year old girl. Life is great, refusing to let MS get the better of me!

Great!

There are so many connections between MS and M.E .. and there is now a mitochondria test for M.E. I know that many with MS got the same disbelief as we do with M.E until the MRI came in.

I lived years up in Orkney. They have a very high incidence of MS( and multiple births) due to inbreeding. So they have specialist help there.

The auto-immune link too; I recently can no longer swallow anything substantial . Gets painfully and dangerously stuck. One ED dr knew enough to explain that this, like the headeaches, is not old age as I was thinking, but yet another auto-immune problem.

Sure enough when I checked the long list of M.E symptoms, there it is, with reference also to MS

Gremlinertia

I am currently waiting on appointments from both the pain clinic and neurology, it's frustrating especially because i feel like things that could be caught/treated now are rapidly getting worse.

Graces7

Gremlinertia wrote: »

I am currently waiting on appointments from both the pain clinic and neurology, it's frustrating especially because i feel like things that could be caught/treated now are rapidly getting worse.

Any better? Hope so...

Gremlinertia

This week i will call the pain clinic and see what the story is on next procedure

CathyMoran

Gremlinertia good luck with that, I hope that it helps you.

embee

I've had some pretty severe neuropathic pain in my arms for the past few weeks, I rang the MS nurse and she got a prescription for lyrica written up for me and is posting it out..... Can ye not get specialist nurses to post you out a script from your consultant?