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My "Baggage"
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My "Baggage" 8 years, 3 months ago #985

  • ginnie48
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Hi there.I've had Adhesive Arachnoiditis since91,or at least thats when I ws registered Disabled and thats what was put on my notes when I had the Medical.Although after that it was never mentioned again!I've had 2 bouts of Viral Meningitis.Numerous MRI and CAT scans and was told in 91 that the pains in my legs ,arm and neck were Fibromyalgia and Cronic Fatigue.I never saw a Specialist about this my GP told me.In 200 I had a stroke and have done reasonably well in my recovery.However my mobility is now very limited and in 1009 a locum GP decided to send me to se a Neurologist because of the numbness and pins and needles and pain in my feet and toes that I'd had for over 5 years and was told it was Gout.I saw the Neurologist last summer who told me I had Peripheral Neuropathy caused by having Flacainide for 14 years,so this was stopped!an Mri was arranged.Then the same Neurologist saw me 6 weeks later and said "of course the Neuropathy is caused by the Arachnoiditis This was the first time in 20 odd years it had ever been admitted!I was stunned and he said he couldn't do anything and wouldn't need to see him again.
However in January this year I was suddenly diagnosed with Type 2 Diabetes and it was arranged for me to see the same Neurologist again because of the state of my feet as the numbness etc eas up my shins by then and I wasn't sleeping because of the pain(I'm still only getting 2 or maybe 3 hours a night napping)<When I went to the Neurologist he was surprised to see me and said I should be under the Diabetic clinic now because THAT was the cause of my Peripheral Neuropathy.!!!I only went to the Diabetic Clinic once and was told I seemed to be keeping my numbers down,although I've been told I don't need to test and have only had one test since January.So I was told I hadn't to go to that clinic either anymore.I have to go next week but only to collect a pair of shoes which they said I need,with a Caliper because my left foots dropped.
I've just been getting worse and feel so down and "lost".I saw a new Doctor at our surgery in August and she said my BP was still very high,I told her about everything and she said she 'd be happier in I saw another Neurologist locally.So 3 weeks ago I went,he told me I had Autonomic Neuropathy NOT Peripheral.My 18 years of sweating,which involves 2 showers a day,a change of bed sheets at least twice a week and not wearing a sweater or coat for 18 years!<it's aparantly the MENAPAUSE !despite me having a Hysterectomy at 38 ,I'm now 62.He also said none of my symptoms have anything to do with Arachnoiditis,despite me having the white Opaque substance in my Lumbar region and at the base of my skull! I don't have to see him again except to have an MRI to confirm I have Cervical Myelopathy (sorry about spelling)I had that last week.I'm so unsteady now and the pain in my feet is terrible I'm also getting Cramp all over my body and in my feet and toes.I'm also getting blurred vision but I have new glasses and 6 weeks ago my optition told me aI have the srart of Cataracts in both eyes.I went for my flue jab on Friday and explained to the Nurse how I was feeling and again she said I wasn't due a check up till February either for my Diabetes or general check up and not to forget because they don't remind us anymore!!When I got home I had ot a copy of the letter to my GP from the Neurologist.It said I had quite a lot of "BAGGAGE" about the Arachnoiditis.All he suggested was doubling up up on the Pregabalin and a Pain Clinic,which I've already done.I just burst into tears and have no idea where to go from here.My husband is so supportive but I just feel like I've had enough,all this started in 86 though I had the Myodil Dye in 70.
I'm so sorry to rant on but I've been reading the posts and realised I'm probably going to find this site better than anything else.Sorry again I just feel so Hopeless at the moment and I used to be so Positive.Take care,Ginnie
I'm 62 years young,have been married to Richard for 37 years.We have a son and daughter a king charles cavalier called Georgie and a neurotic cat Tigger I was diagnosed with AA in 91.had a stroke in 2000.I also have Fibromyalgia and told I have diabetes type 2 in January.
Last Edit: 8 years, 3 months ago by ginnie48.

Re: My "Baggage" 8 years, 3 months ago #986

  • Kim
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Hi Ginnie
Glad I could sort out forum problem. I am getting good at this User Manager problem (Pride comes before a fall, Kim)
You have many complex problems but sadly none I haven't heard before. In fact this whole website only exists simply because of people who have the same problems you have encountered. Every article has been prompted by problems I recorded on the Helpline I use to run. They are divided into chapters of no longer than 2-3 pages for specific problems. We do have a Search category but I realise this can sometimes give you too many options. I will copy and print out your post and put in the best links from the website either here or in an email.
Take care of that husband, too many partners and families, dismiss or deny and abandon sufferers.
Hope you have completed this questionnaire and the new one coming up.
Take care
NEMESIS - goddess of indignation against and retribution for, evil deeds. Apparently regarded as an avenging or punishing divinity - I wish.
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