sweating, light-headedness and now fatigue

[tescodirect]

I have a collection of as-yet undiagnosed symptoms, which are getting worse. About two years ago, I began to sweat profusely with even the mildest physical activity. This was accompanied by occasional feelings of chills, and then hot flushes, and a greatly reduced tolerance of heat. At the same time, I began to develop headaches, usually towards the end of the day. Around two weeks later, I felt extremely light-headed. Not so much dizzy, but more like the feeling you get when you hyper-ventilate. I really struggled to keep track of what I was doing, and thought I might pass out. The light-headedness has been with me ever since, initially varying in intensity, but now there constantly. Over the last year, I have also had numerous episodes of sinus tachycardia. Recently things have got a lot worse, and I feel constantly exhausted, and physically very weak. I am also struggling cognitively, particularly with word-finding and typing. Also get mild tingling sensations, and blurred vision, which are recent. Having more funny episodes like the one described above. Typically, I feel worse in the mornings, with things improving as the day goes on.

I had an MRI recently, which described diffuse white matter lesions, far too numerous for the age of the patient, and consistent with small vessel disease. I have had extensive blood tests, and the only thing which showed up was high cholesterol, for which I have been prescribed a statin. However, I cannot believe this is simply a case of high cholesterol. I am 42, and have no other risk factors (e.g. blood pressure, diabetes, smoking, drinking etc). Also, small vessel disease would not explain the extreme fatigue and sweating. I have had numerous tests on my heart, and a carotid doppler scan, none of which suggest anything sinister. I believe a lumbar punture is next on the cards, but I do not know when that will be.

I am quite worried as things have deteriorated a lot recently, and I fear the suggestion of small vessel disease is leading investigations down the wrong track.

[MG (Admin)]

Thanks for your question....have you had a full neurological examination?
If not then this should certainly be done.
Please let us know what was or is found when this is done.
Also have you had any blood tests or a lumbar puncture?
Do you suffer from anxiety oir panic attacks?

Looking forward to hearing back.

[tescodirect]

Thanks for getting back to me.

I have had a full neurological examination. The only finding was bilateral nystagmus.

I have had a range of blood tests. The only thing highlighted as abnormal was elevated cholesterol. No signs of infection. Although the total cholesterol level was high, the LDL/HDL ratio was within the normal range. I was also tested, at my own request, for syphilis and lyme. Both tests came back negative. However, I am aware that the Lyme test, which I believe was the Western Blot test, has very poor sensitivity, and a negative test cannot be taken to conclusively rule Lyme out. Several people have mentioned that my symptoms are consistent with Lyme.

A lumbar puncture is planned, although I have not had an appointment for this yet.

I do experience anxiety in relation to these symptoms, as they are getting worse and making it increasingly difficult to lead any kind of normal life. I just about manage to get through a day at work, although I am finding the cognitive problems are threatening that, but I simply come home and fall asleep on the sofa each night. Even washing the car at the weekend exhausts me for the rest of the day. The time when I feel most anxious is when I first wake up in the mornings. I do not think I am experiencing panic attacks. The feelings of light-headedness and episodes of tachycardia do not tend to coincide. Most of the prolonged episodes of tachycardia have occurred following a meal, and not when I have been feeling particularly anxious.

[tescodirect]

A referral has finally been made for neurology, but I found out yesterday that the earlist available appointment is not for at least another month. I find this really distressing, as I am getting so much worse. Just to add to the other symptoms, I have recently noticed a tingling sensation along the backs of my hands and forearms. I notice it more in the mornings, and it has spread to include my chest, abdomen and most of the front of my body. Although the cluster of light-headedness, sweating and headaches have been there for nearly two years now, this is a new symptom that has emerged only in the last couple of months. I also find my hands tend to shake in the mornings.

I was thinking some of this might be anxiety, as I am waking up every morning feeling extremely tense and anxious. However, this morning I took a lorazepam, which has taken the edge off how tense I feel, but the tingling is still there: so I doubt that can be due to anxiety.

My sleep pattern has also gone a bit strange, apart from feeling premanently exhausted, and unrefreshed no matter how much sleep I get. I am typically tired all day, as though I never quite wake up properly. I tend to struggle through work, get home and sit on the sofa. I typically fall asleep between 9.30 and 10.30, and have noticed my legs tend to twitch as I do so. This sleep tends to be a very deep sleep, from which my partner finds it difficult to wake me to go to bed. I also notice that when I do wake up, I am sometimes quite sweaty. I will then struggle to wake up and go to bed, where I immediately fall back into a very deep sleep until anywhere between 4am and 6 am. I then wake up feeling extremely tense and anxious, sometimes shaking. I usually go back to sleep, but this is a very light sleep, with dreams, from which I wake frequently, each time with an intense feeling of anxiety.

Any advice or comments very welcome, as it is driving me mad constantly waiting to get some movement from the health system here.

[tescodirect]

Hello again,

I have not posted for ages because it has literally taken me until today to get my test results.
In summary, I first had a repeat MRI scan, this time with gandolinium contrasts. This scan did not show any change from the previous one, and nothing lit up with the contrasts. The conslusion from the neuroradiologists was again small vessel disease.
I then had an EEG, which included hyper-ventilating and flashing lights: no sign of abnormality. The only comment was that the EEG was normal for someone who was drowsy, which I was/am most of the time.
Finally, I had a lumbar puncture, the results of which I received today. The results showed serum protein markedly elevated at 1.03g/litre. CFS glucose was 3.8mmol/l, serum 5 mmol/litre. The cytology revealed occasional scattered smaller medium sized lymphocytes but with no cytological features of neoplasia.

Clearly the two abnormal findings are diffuse white matter lesions, in the anterior part of the brain, and the elevated serum protein. I asked my neurologist what this means, and she said she did not know as these findings are non-specific. Her plan is simply to repeat both the MRI and lumbar puncture, and see me again in around 3 months time.

Can anybody explain these results further for me? It seems the message is that there is definately something wrong, but we are still no closer to finding out what. Are there any other tests I should be pushing for? My symptoms remain largely unchanged, and consist of a permanent feeling of light-headedness, profuse sweating with even the mildest physical activity, and feeling permanently tired.

[jasontary]

hi , i have exactly same syptoms, i have been depressed for the last year and take celexa , for depression, i also have sleep apnea, but have had that for a long time, but everything your describing is happening to me, in morning it also feels like lungs spasm or like your out of breath for a second, hard to describe,

[tescodirect]

I have a little bit more information now. Third MRI no different to the previous two, so no sign of pregression. Radiologist once again concluded small vessel disease. I had a bit more info from the lumbar puncture, that the elevated serum protein is thought to be a sign of inflammation, but not one that is specific to the CNS: not entirely sure that I follow that. Have not got appointment for repeat lumbar puncture yet. Statins seem to have worked, and cholesterol is no longer elevated. However, something that nobody has paid any attention to before is that my blood tests show low testosterone: this blood test was repeated, and it was even lower the next time, but nobody seemed to take any notice again. The doctor who brought this to my attention thought that this could explain why I am constantly exhausted and sweating all the time, and recommended I see my GP to get something done about it. Unfortunately, my GP clearly felt out of his depth and said he will refer me to an endocrinologist, which will probably involve a 6 month wait. Any ideas as to whether low testosterone could really be making me feel this bad? Could this be related to the elevated serum protein and white matter lesions, or are they all unconnected?

[Ally]

HIya

just wondered if you had been tested for antiphospholipid syndrome or lupus?

It s a rheumatologist that i am seeing, and have now bee diagnosed with Antiphospholipid syndrome and have probable lupus but have negative bloods for lupus at present.

I feel fatigued, in pain, headaches (which went once i started on low dose aspirin as aps is sticky blood) i will put a website link for you to have a look at the symptoms to see if its similar to what you are suffering with

http://www.hughes-syndrome.org/

take care

Ally x

[traveler]

Hi,
I just read all the information you had written and what you have sounds a lot like what I have. I was diagnosed with POTS
(Postural Orthostatic Tachycardia Syndrome), I started researching it online and I thought you will be amazed at what you find.
Take Care,
A person Who Cares

[RoRo]

Hi Tesco,

I also have the same symptoms as you and also have very low testosterone. Lucky for me this is the first thing the doctor noticed & I have been getting injections for the past few months. While i feel better as far as energy and sex drive it has not improved my sweating issue. You should really go to the doctor and pursue the testosterone path as this can be a serious issue especially later in life. Did you ever find out anything more from your neurologist? The reason im asking is I have my first appointment today and really don't know what to expect. If he cannot find anything then the next logical step is a psychologist.. which seems weird. I'm not nervous when im alone or having drinks with the guys, but something is causing me to sweat profusely. Anyway lets share information and hopefully we can find a cure.

Ro

[KatieK]

Just found this question, but I might still be of some help because my experience is that no one knows how to help medically. I was diagnosed with POTS this spring after 2-1/2 years of symptoms so severe that I haven't been able to work or function normally. I can sit from 1-2 hours before I pass out, stand or walk from 10-25 minutes before I pass out; both ranges are dependent on ambient temperature, the hotter it is, the less time I have before I'm gone.

Haven't found any cures, but regarding eating causing problems I have learned to eat only very small meals and to eat cold or tepid foods only. For some reason, hot foods or even a cup of hot tea or coffee makes me really ill, even if I am reclining in a cool room and should be okay.

I have also found that when I am overheated and dizzy or nauseated, the first thing to do obviously is recline. The second most important is to drink as much really cold fluid as possible, or even better, to let chunks of sugar-free popsicles or fruit bars dissolve at the back of my throat. When drinking cold fluids, they also seem most effective if I can tip my head back and let them flow down the back of my throat as much as possible. Don't know why it works, but it helps revive me more quickly than anything else. Hope this helps.

Good luck!

[Tryagain]

Have you been tested for Hyper Thyroid or Graves disease?

I believe Hashimoto's is another form of overactive thyroid. Overactive thyroid can explain the sweating, fatigue, and weakness. It could also explain hair loss and changes in weight. With Graves, you can experience fatigue, and at the same time feel unable to stop moving. Lack of interest in food and keeping busy results in weight loss. With Graves, you can feel so weak that you might even feel the need for a cane and have difficulty rising from a chair. If this sounds like you, your endocrinologist can order blood tests and an iodine uptake.

It can be treated surgically or with medicine like Methimazole. The surgical route removes your thyroid, or part of it, and usually requires you to be on artificial thyroid hormone for the rest of your life. The Methimazole route takes much longer, sometimes 2 years or more, but often can resolve the problem without the need for lifetime hormone replacement.

Hope this helps. Good luck to you!