I think I have responded to you before on the neurology forum.
If you are only 29 then it is very unlikely menopause is responsible for your symptoms (even at 50 menopause wouldn't cause all the symptoms you listed above!). Why the nurse (or whoever) would suggest that, unless she didn't know your age, is bizarre. Are you even having signs of menopause (newly irregular periods, either heavier or scantier, (you did mention hot flashes/feeling warm), etc? If not, and unless your mother and grandmother went through a very early menopause/premature ovarian failure (only about 1% of women go through menopause before even 40), then you should look elsewhere for the cause of your symptoms. Hormones could indeed be responsible for your symptoms, but it doesn't have to be a sex hormone problem. You could have some kind of pituitary, thyroid, adrenal problem, etc., (especially with the nail, skin and hair changes), and your best bet would be to get in to see an endocrinologist and rheumatologist. If that will take forever in the UK, then try to convince your GP to do some of this testing on you if it hasn't already been done. He can order blood work for endo problems as well as rheumatologic/autoimmune blood work looking for the various connective tissue diseases. I wouldn't get stuck on the "everything started after delivery thing," although the hormone changes/stress might have triggered off your illness somehow. Lots of women who have autoimmune diseases (lupus, MS, etc.) have exacerbations or remissions at different times in their cycle, while pregnant, and post-partum due to fluctuating hormone levels. With several autoimmune diseases women have noticed a remission of their symptoms while pregnant and then get worse after the birth. I, personally,
Also, I remember that you mentioned your calcium was mildly elevated before. That struck me, because mine has been mildly elevated as well, then back to normal. I have many of the same symptoms you have (I've got neuro stuff, heart palpitations, itchy skin, muscle weakness, faintness, etc.), and I have been dxd with an autoimmune autonomic neuropathy but still don't have a definitive diagnose (what is responsible for it all). I've spent 13 years trying to get a dx and (like you) spent the first 12 1/2 trying to convince my doctors that I was actually sick (they didn't believe me either). Now I am finally believed due to a couple positive test results indicating a neurologic problem and hopefully will be getting a dx soon with my new internist. He mentioned sarcoidosis to me and I think it is something you should read up on as well (in light of your symptoms), especially with the mildly elevated calcium level (although there are different things that can cause elevated calciums). Sarcoidosis doesn't just affect the lungs, it can affect any part of the body causing skin, neuro, heart symptoms, etc. I personally had a significant exacerbation every single month when I was ovulating. I went through menopause at 43 (now 44), but 29 would be very unlikely (unless you have indeed stopped having your periods/are irregular and have a serious endocrine problem with one of your glands).
Hi Annie,
Thanks for your message. It was a long shot with the menopause thing - I just wondered that's all.
Re the Sarcoidosis thing, I did, a while back wonder if it was that but all my bloods were perfect. I have had repeat tests of calcium and they were well within normal. I am due to have another one done.
My chest x ray was completely clear, even down to lymph glands, they were normal. But it is possible that it is an autoimmune problem, my mother has an autoimmune disease also.
The calcium level was not a concern to my GP, in fact it was a locum that told me about the elevation, three other doctors did not even tell me that it was up, they said everything was in normal range. It was explained to me that calcium can go up a little bit if the tourniquet has been on a while which it was, I had a lot of blood taken on the night they did those tests. I had about 6 or 7 vials taken out of me that night.
My albumin was slightly up but not over normal, just marginally within normal but I am told that is dehydration. Over the past few days I was worried because my hands went red. they've calmed down again. Its so confusing. I DO believe my body is attacking itself as a result of the birth, followed by 2 infections, followed by 2 viruses straight after. I have had chronic sinusitis since the 2nd viral infection which was a sinus cold. That was when the tachycardia and palps started too. It occured the day I felt increasingly bad. I could not breathe through my nose at all, I had a mouth full of sores and felt a tight band around my stomach. I went to see the out of hours GP for help as the sores were increasing in number within minutes, it was like large blisters in the insides of my cheeks. When I got down to the surgery, the GP took my bp and pulse and sent me straight into the hospital for investigation because of they were both way up. The palps and tachy I have had since I had that virus. My heart rate was normal before then. It was like, with every virus or infection I got, the worse I became. And I catch anything that goes round, I have been like THAT for a few yrs.
I am now at a point that I am terrified to exercise, I get cabs everywhere, even for 200 yds because I am scared about my cardio symptoms so much. Climbing the stairs gives me palps, I get lots of skipped beats with panic attacks too. And the panics feel awful, they come out of nowhere.
I have had all sorts, I can't even get a hot bath anymore, I have to use lukewarm water because it seems to shock my body now to use hot water.
I am on the brink of suing my GP surgery because I requested an MRI and to see a neuro and they have refused. They have insisted I have a mental illness and nothing else. I had an argument with the locum today while I pestered for an ANA test to be done. They refuse to help me. So I have got in touch with another practice.
I did read that sarcoidosis shows lymph gland enlargement on chest x rays in 95 out of 100 cases. Also that white cells can be raised.
My GP did say that my hormones could play a part, although my periods are regular, I do have problems with body hair and have had for a couple of yrs, I also have become more aggressive. I am normally aggressive tempered but I had violent outbursts over the past couple of yrs.
I have increased stress in my life and admit that some mornings (while on beta blockers) my rate can be steady and some mornings, if I get wound up my rate can go sky high. I frequently get butterflies in my stomach, I wake up with it sometimes. I can walk into a room and get a knot in my stomach followed by tachy.
I have had similar probs 2 yrs back after having mumps. It turned out that it was in my system for over 7 weeks even when the swelling had gone. I was left with a raised gland under my ear while I had it and that gland never went down.
My mother thinks I have ME. I was referred to a shrink by my GP, who discharged me telling me that I should have an MRI and that he specialised in ME and said he really felt strongly that i had it. He wrote a letter to my GP getting him to send me to a neuro, but my GP refused to do so thinking I had pulled the wool over the shrink's eyes somehow.
Well, if you haven't had an ANA done yet I would get that done. That's pretty basic and I would think your GP would agree to that. As you probably know, it is elevated a lot in autoimmune/inflammatory diseases, and being that your mom has an autoimmune disease it is more likely that you could have one. Mine was mildly elevated (1:160 at its highest) but my doctors dismissed it because they didn't believe I was sick (they said it was "nonspecific"--which it is, but nonspecific doesn't mean irrelevant), but I knew it was significant. I always believed I had some autoimmune process going on. Autoimm. diseases also run in my mom's family. Hopefully you will get in to see a rheumatologist and have the panel done for the connective tissue diseases.
Regarding sarcoidosis, I know it's a long shot and you probably don't have it, but you have symptoms all over the place as I do (skin, heart, possibly neuro, etc.), and from your other posts it sounded like it could be a consideration (as well as a systemic vasculitis, which I mentioned before). I don't know that you could get this many different symptoms in such a short period of time after initial onset, though, with either disease (I'm just a well-read layperson who spent 10 years on the internet trying to figure out what autoimmne disease I had, and still don't have a definitive dx, so I am NOT a medical person, but I try to be accurate when I share what I've learned).
Regarding the calcium, from what I have read only 10% of people with sarcoid have an elevated blood calcium and about 20% have an elevated urine calcium, so calcium is actually normal in most people with sarcoid, but in light of all your symptoms and the mildly elevated calcium that you mentioned before, I thought sarcoid might warrant further investigation. I didn't know that the calcium could be elevated if the tourniquet was left on too long, but what constitutes long? There is other blood work than can help diagnose it/point to it--elevated ACE level, elevated ANA, elevated sed rate/CRP, abnormal liver function tests, brain/C-spine MRIs if neurosarcoid is a consideration (rare), and other tests I probably don't know about. Your are right that usually their are enlarged lymph nodes and granulomas on chest x-ray about 90 percent of the time, as the lungs are almost always involved, but some people have sarcoidosis in parts of their body other than the lungs (neurosarcoid, cardiac sarcoidosis, etc.), and even if it is in the lungs sometimes a chest x-ray just isn't sufficient to pick it up and a chest CT scan is needed. I had probably 4 chest x-rays in the past 13 years and none showed evidence of sarcoidosis (no doctor ever even mentioned sarcoid to me in the past), but my new internist mentioned it with regards to a couple mildly evevated calciums I've had over the years and in light of all my symptoms and the fact that other things have pretty much been ruled out, and after reading about sarcoidosis extensively in the past few weeks I think it is a real possibility in my case and intend to pursue it with him when I see him in a couple weeks. I hope I get answers soon and I hope you get them too. Good luck to you in trying to get your doctors to listen, take you seriously and agree to the tests you need to figure it all out.
I have the same thing i am so down my skin on my hands has wrinkled and its dry and i also have this on my kness and my skin all over feels thick ....
I am scared I have menapasue to. I have also just found out i have pcos i dont know if that can cause it all but i ve also had a mild stroke and seizures..and i have all the symptoms youve said along with allergies to wheat rye..chcolate...
I am seeing rhumetology, endocrine, mri scan neuro..i think if i could have changed thinks neuro seem to no what they are talking about as a whole approach to what it can be..
Good luck
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