I have had ongoing issues with disc problems in my spine since 2001. Between my PCP helping me with pain medication and chiropractic manipulation/adjustments/therapy/stimulaion, I was able to continue working until 2014. In 2013 I changed PCP's and everything in my life changed. I was told by him it wasn't advisable to get chiropractic care anymore because of osteopenia. The only thing he gave me for pain was gabapentin. Started me on low dose (100mg 3xday) then quickly increased it to 600mg 3x day. That drug made every nerve ending in my body stand on edge. Then he added Lyrica which made my lower legs and feet swell so badly I couldn't get my shoes on. I stopped taking it and every other medicine he prescribed except the gabapentin. I was having some horrible side effects from gabapentin so I tried to stop taking it but was unaware it would cause sever withdrawal symptoms. I had to gradually start it again and ween off over the next few months myself, because my physician, and all other physicians would not admit it would cause withdrawals, and therefore would not help me.
When PCP and other physicians, including neurologists, psychiatrists, etc. couldn't find what was wrong with me nor could understand where all my pain was coming from, and when everything was left untreated, and my condition continued to worsen, i was having a hard time concentrating and performing tasks that came to me naturally.
I also started having frequent falls over a period of a few months, fracturing some bones in foot, wrist, knee, shoulder and cocyyx. The doctors notice my gait wasn't normal and my balance was a bit off, so they started leaning towards Lewy body dementia.
None of this felt right to me. I knew I was having problems, but kept going from doctor to doctor for help to correct my issues and help me through the pain so I could make some advances with physical therapy and exercise. None of them were willing to do that and I'm assuming it was because they felt so sure I was a dementia case with possible lewy bodies, and 63 years OLD so they would not prescribe any proper pain medication.
After that I spiraled down hill and was very close to being an invalid. My posture (from pinched nerve and possible fracture in neck, radiating to shoulders) became so stooped I could not straighten up. My neck became so tense and out of alignment that it would pull my chin to my chest and lock it there.
During this time these doctors put it into my one of my sons mind that his mother, as he knew her would never be the same again and he needed to accept it. At that point, my son, thinking I could not think rationally, nor accept the diagnosis they had given me, decided I might be better off in a home for older people. He finally decided I didn't belong there when he had a look at the condition of the people living there compared (wheel chairs, oxygen tanks) compared to my condition (still walking, breathing, tyring to stay mobile), yet for some reason, when plans to put me there didn't work out, I continued to recieve threats of being placed there by his wife. They also isolated themselves and my grandchildren from me. That caused as much emotional pain for me as the physical pain.
Now, still having bouts of this exchruciating pain, yet able to contol it a bit better, my neurologist has told me I do not have Lewy body dementia (my gait and balance problems obviously caused from spinal injuries), and not sure if I even have dementia.
They have seen arthritis in my neck and my blood work shows a lot of inflamation. More blood tests have been ordered to determine which inflamation marker is most elevated and has ordered an ANA survey including rheumatoid factr, (RO) ENA antibody and (LA) ENA antibody testing.
Has anyone out there had same/similar experiences? If so, has anyone helped you deal with the complexity of these illnesses?
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anagran
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Hi Anagran. What you have to say here really grieves me on so many levels and I'm so sorry that you're having all these problems.
I've only just been diagnosed with an autoimmune condition, and like you, I've struggled to get a diagnosis and am now battling to get treatment...so I understand exactly how hard it is and how you must be feeling.
I'm lucky enough to have the support of friends and family so it makes me unutterably sad that you don't appear to have the same. I'm so sorry for that.
And if you are having trouble accessing treatment because you are 63 (not old at all) that's disgraceful, oh so wrong....and makes me very angry on your behalf.
I've been reading this forum for several months now and am learning a lot...but unfortunately, I'm not yet knowledgable enough to offer much in the way of...well, very much at all. Yet.
However, one thing you say does strike a cord:
'The doctors notice my gait wasn't normal and my balance was a bit off, so they started leaning towards Lewy Body Dementia' ...which has subsequently been discounted...so...
I'm just wondering, have you ever had your Vitamin B12 levels tested?
I ask because B12 deficency can have a devastating effect on the body (unsteady gait, falling, memory problems...and much more) and people with B12 deficency are often misdiagnosed with a host of other conditions (MS, dementia, CFS, fibromyalgia)... And many other things to. Sadly.
And when other complex medical conditions are present, the possibility of B12 deficency is often over-looked - or not even considered.
Another factor is that people who have one autoimmune condition often develop others (autoimmune conditions tend to come in clusters): pernicious anaemia is an autoimmune condition that causes B12 deficency - so it would certainly be worth asking to have your vitamin B12 levels tested, if this has not already been done. And be aware, GP's often think that a result that is low in the reference range is 'normal' and therefore okay. Wrong. B12 deficency can be a problem even if the results appear to be within the normal reference range - just so,you know.
I'm certainly not suggesting that this is the cause of all your problems - but if you do have a vitamin B12 deficiency, it will certainly need identifying and treating...so well worth following up with your GP.
I feel a bit like B12 has come to hijack the Lupus forum (sorry lupus forum) so...if you think this may be a problem for you, or you want more information, put up a post on the Pernicious Anaemia Society forum here on Health Unlocked and we will be able to help and advise.
And I'm only aware of this because I was undiagnosed and then under treated for B12 deficiency myself...another case of battling with GP's and consultants - an all to common theme on many of the fora here. Again. Sadly. Bad.
Thirty years ago my GP diagnosed me with ME (no examination, no nothing...diagnosis plucked out of thin air. And ever after stated that there was no treatment and nothing that she could do for me (despite, I now realise, regular abnormal blood tests and raised antibody results.
I now suspect that I've had an underlying autoimmune condition for all those years, with regular flares which were simply ignored. So again, I know how you feel when the medical profession is not at its best...to put it fat to kindly.
Thinking about your inflammation, the antibody tests - are these being done by your GP or have you been referred to a rheumatologist? I ask because many of the symtpoms you describe can be associated with autoimmune conditions (and oh there are so many)...so a rheumatologist may well be the speciality you need to see to try and get to the bottom of your health issues.
I'm sorry I'm not able to offer more in the way of advice...but the good news is that there are lots of lovely knowledgable people here...and I'm sure folks will be a along with more replies, before too long (weekends can be a bit quite sometimes, I think).
Really, I'm most of all wanted to let you know that someone has heard you, that the are others who are in similar situations, and that you are not alone.
Even more than that I'm wrapping you - gently - in virtual hugs...because my goodness, I think you need them.
Take very good care and know that there are people here who can help and support you.
Firstly, I absolutely agree with what Foggyme has replied to your post.
Secondly, unfortunately, many of us on HU have, do, and will, suffer terribly, within a healthcare system, that allows providers to undermine patients.
I won't go into detail here, but please know, that I too, have suffered very, very badly, many, many years ago, when Drs, and my birth family, colluded but never listened to me. At that time, I had to fight my own corner through Faith and self belief. Trust your gut! Drs can, and do, get diagnosis wrong.
I applaud you for fighting for yourself. I know how hard it is. I eventually became a registered nurse. During which time, I received an award for 'extra care to patient's'. Extra care? I listened! I still do! Like Foggyme, I hear you too.
I am pleased to note that your neurologist has realised, and discussed with you, that spinal injuries are causing many of your problems. You have someone in your corner. Build on that. Build Team anagran (lovely anagran, says a lot? I envisage you love your grand children dearly. Shame on your son and wife, denying you the unconditional love of the children).
I have many symptoms like yours. Though, it has never been suggested I have dementia any type. However, I did have one consultant tell me I had a psychological response to ?allergy/intolerances (I complained to PALS, got an apology, and it was acknowledged, he had no understanding of autoimmune disease).
I want you to build Team anagran. When I was told I had sjogrens syndrome, connective tissue disease, (after having hypothyroidism 25 years), I found many 'friends, family, acquaintances, were unable or unwilling, to support me'. I researched, studied hard, joined HU, and other groups. In short, I built Team me! Anyone, and everyone, who did not support me through the hard times, I let go.... I now attend face to face meetings (sjogrens), changed church, come to HU, recognise all weather friends, and value them. I am open, and honest with Drs, telling them, I have such and such, please work with me, so that I can be as well as possible, and also help myself.
I feel for your son. He is between a rock n a hard place. He listened to Drs. Did what he thought was right. He realised the place wasn't for you, and put that right. His wife appears less understanding, and is still adding to your pain. In my experience, these same people are struggling too. Give them space, I have been there.....
Concentrate on you. Here, you are amongst friends. Tomorrow, and every day, I wish you well in your journey. You will learn a lot about yourself. And, about other people.
Hi Webar4780. Something you said sparks another thought so...
anagran ... undiagnosed or under-treated B12 deficiency can cause a neurological condition called subacute degeneration of the spinal cord.
No idea if this is pertinent to you, but certainly worth discussing with your doctor's and consultants (though some -even neurologists) are not aware of this.
Yes, I have researched a lot. I did read up on it. However, I am building my team first. I have 2 appointments to go with my current run...lol
My acute, horrible ill health experience started 2.5 yrs ago. In fact, it was sciatica pain, badly managed by GP practice, (way 2 many medications, no MRI, till I collapsed). Dr sent me to hospital via ambulance. Short story, consultant stopped all those meds immediately! I think very bad move! I was bedridden for 2 weeks! Withdrawal from prescribed drugs no picnic in the park! Pharmacist very helpful saying will take a year for body to get over assault... it took nearly 2 yrs.
My long awaited MRI scan showed 3 prolapse discs, (2nd time in 10 years), etc..... etc.... then began the merry go round with Drs..... sjogrens, ?lupus, connective tissue disease, chemical allergies diagnosed..... on n on.... journey, very challenging at times, learning a lot!!!
Now at a place where I am taking back some control. Thank you to HU folks, BSSA, good Drs, who work in partnership with me, all weather friends, and my dear family... my own self belief, and FAITH...
I have one appointment, (private dentist) Thursday, final, (for now) appointment, also appointment (private specialist in thyroid and nutrition), July 4th.
My folder of tests, reports, prescribed meds, what helps, what doesn't, who helps, who doesn't, has/is growing! Lol. I intend to collate all that information, then, and only then, address my spinal issues. Currently, I take 8/500 codeine porn, as they are the only pain meds I can tolerate now. I also take levothyroxine, (dose prescribed up/down due to on going symptoms, I aim to get sorted properly), I take vit d (GP reluctantly prescribed, after coming HU, I learned 49 inadequate result), self care vit c. I am hopeful nutritional expert will help with a plan for nutritional supplements bespoke. I tolerated hydroxychloriquine for four months. I have become intolerant of many prescribed meds.
Since coming HU, I have been able to reassess all that i went through. I retraced the awful ill health period. As Drs treat body parts, I have taken myself apart too, lol. I am nearly there! Then, I can, and will, put my self back together holistically, with my Team Me. I can hardly wait! Any Dr that I feel has not been helpful, I let go, same with friends, acquaintances, and/or family......
I am already earmarked for starting my own support group (voluntary), for other people diagnosed with same autoimmune disease.
As I believe, good can come from bad experiences, people have helped me, I will help others... this is the world I choose..
The first 6 months of ill health, I was very isolated, lonely, frightened, unwell.... I don't believe any of us should have to go through such an experience. What is humanity if it is not concerned with each others well-being?
And by the way, I did get b12 check think maybe 600ish, anyway, I think too low. I'm away for weekend, don't have folder with me... I have prepared b12 result query for my nutritional expert though.. X
Hi Anagra....sorry you have no support from your family. How dreadful. My family thinks theres is nothing wrong with me. Its just aging. I am 54. I do a lot on my own research and treatment. (Maybe not always a good idea, but I am highly allergic to medicine)
I thought it was b12 defieciency with me too, but found recently in my bloodwork my b12 was high. I started healing my gut and liver. Maybe things are absorbing better.
Lot of help, support and good advice on here. Try to take care of yourself, and find someone, a friend, that might support you and help you out.
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