CFS, MS, strange symptoms had many tests

[Lextgrim]

am literally feeling very down about my situation - I shall keep it brief.  I am really worried about my health, though tests have all been fine.

Started in Dec: Due to give birth, I start getting spots in front of my eyes.

After the birth felt fine.

Late Feb: Three infections: Wisdom Tooth, Vaginal infection and a mild chest infection (one after the other through Feb)

Experienced pain, tingling, shakes, flushing, numbness, pain and itching from waist down, skin itching generalised, sore tongue, tongue coating, itchy throat, tickly cough.  

Had bloods taken - results were normal.

March - blood spots on skin, itching, developing anxiety over symptoms, painful joints and tendons.  Bloods taken - normal!

April - mouth sores after eating, painful tongue, twitching in tongue, spots in front of eyes, tachycardia, cold hands, nails change colour (lilac/blue with red bands at the tops) blueness on knees, pallor, loss of weight, fast weight loss, fatigue, painful sinuses, ear pain.  - Bloods and Chest X Ray - normal.  3 week long heavy period.  

May - Skin thinning, more loss of weight, painful muscles, tachycardia, pvcs, ectopic beats, arrythmia, toenails coming off, cold painful hands and feet, aching legs, buzzing sensation below waist, numbness in back, spots in front of eyes, blood spots, shortness of breath.  More blood tests, 3 ECG's - All normal (apart from tachy)

Told by more than one GP and at the hospital that it is Anxiety and have been made to fill in Mental Health Assessment forms. Being referred to see a psychiatric doctor.  

Having more pain, weakness, weight not improving when I eat better, getting lump in throat sensation after eating, getting palps while eating and after walking up the stairs, pain in left arm, pain in chest, vibration sensation in abdomen, legs and chest, blood pressure fluctuates, feel tired, feel out of breath from walking up the stairs, having to take deep breaths a lot, now feeling depressed.

GP refusese to test me further believing it is all "in my head" that is causing the physical symptoms.   Been given antidepressants.

I have been in touch with the local PRimary Care Trust and more to try and get some tests, feel worse day by day, this has been going on too long.  I am scared, I have rang counsellors, health advisors, GP's are not helping.  Asked for MRI, asked for Holter monitor for heart rate, asked for another chest x ray, asked for Echo.  Been referred to mental health team in June, plus a gyneo to check out that.  

Can this be CFS (Chronic Fatigue?)  Or it be MS?  

[BillieJC123]

But some of what you are describing to me sounds like autoimmune problems.  Go and look up Lupus and Reynauds.  Has your doctor ran an ANA blood tests or RNP blood test or  Anti Smith DNA?  I would demand more attention or ask to be referred to a doctor who has more common sense.  But it does sound like some of your problems could be linked with an autoimmune disorder and after having a baby sometimes those are set off like firecrackers.  Hope this helps a bit.

[laurie1067]

I too have had that lump feeling, weight loss, peripheral neuropathy, vasovagal syncope/seizure, and ulcers on my tongue.  I was just diagnosed with Celiac disease.  Have your doctor do a blood test to see if you have it.  It can cause a very wide array of symptoms.  Your doc should order an IGA and TTG IgA test.  Mine was discovered by biopsy when I had endoscopy for GERD.  This was after I saw my GP, had 8 vials of blood taken by the GP and neuro, a nerve conduction test, and an MRI.

[Quixotic1]

Hi, I want very much to discuss this with you, but I am having a bad day.  The computer screen is hard to follow.  I agree that your symptoms and the timing of occvuring after delivery is VERY suggestive of an autoimmune process.  You need a prompt rheumatogic work up.

My first thought given the rashes, itching, joint symptoms, fatigue, mouth lesions, difficulty swallowing, changes in nails and skin, diffuse pain, cough, shortness of breath and cardiac symptoms, fever, and weight loss is a condition called dermatomyositis.  

Here are a couple of links until I can get back to the computer...sorry.

http://www.myositis.org/about_myositis/dermatomyositis.cfm

http://www.ninds.nih.gov/disorders/dermatomyositis/dermatomyositis.htm

Please read this sites' information.  If it looks like you fit, you must start treatment!!  The disease can affect the lungs and heart.  

Let me know what you think.  Copy and paste the links into your browser "address".  The second one has the most complete discussion

I'll try to get back here soon.  Quix

[Annie62]

Lextrim,

In addition to the above suggestions, you might also want to look up systemic vasculitis (there are several different kinds) and see if the symptoms of it sound like what you are experiencing.  I agree that your symptoms sound like they might be due to a connective tissue disease and/or autoimmune disease.  Do not let them write you off as having a mental problem.  The referral to a mental health counselor might or might not be a good idea, depending on the person you see.  They might agree with the doctors you've seen and discount your symptoms as the doctors have or you might get lucky and be able to convince the therapist, after they see you for a short period of time and after you have had the opportunity to describe your symptoms in detail (which one usually has very little time in which to do in a doctor's office), that your symptoms do indeed have an organic basis.  I really hope you get the help you need.  I could really relate to your post, having spent almost 13 years myself trying to convince doctors that I was actually sick.  It is a helpless position to find yourself in, but don't let it become hopeless.  Eventually the right tests will be done and you will get answers.  

[Annie62]

Lextgrim,

I just looked up systemic vasculitis and I came across this excellent and easy to read article from Johns Hopkins.  It is actually one I came across a couple years ago when I was researching systemic vasculitis in relation to my own symptoms.

All of these syptoms (symptoms) that you listed are symptoms of systemic vasculitis:  fatigue, diffuse joint/muscle pain, itching, shortness of breath, cough, palpitations, tachycardia, weight loss, mouth sores, (your possible) Raynaud's phenomenon, and if your CNS is involved I believe you could have the numbness/tingling as well.  I don't know if you could get all these symptoms with a systemic vasculitis in a 5- or 6-month period of time (you said you have been sick since December), but it could be possible.  You listed other symptoms as well, but I do not know if they are or are not symptoms of systemic vasculitis.  I hope you research it further.  Good luck.

[Annie62]

Sorry-I forgot to put the article's address:

vasculitis.med.jhu.edu/whatis/symptoms.html

[patsy10]

I would skip the psych.  There's no way your symptoms could be psychological.  Many doctors like to call things mental when they can't find anything on tests.  I would demand a referral to a rheumy and get a new PCP.

[Annie62]

I agree--it's probably a waste of time to see a therapist, but somebody on this board (actually AMO) said that that was what she finally decided to do when her doctors initially thought her complaints were psychosomatic:  she followed up on her doctors' suggestion to see a therapist, who informed her doctors that he/she did *not* believe her complaints were psychosomatic--and that gave more credence to her claims).  But if she can get a rheumatologist to listen to her and get him to work her up for connective tissue disease, then she should go straight to one--the sooner the better.  

[Quixotic1]

We are all on the same page here.  I reread one of your older posts, Lestgrim, about pupils that were not equal. This is a common finding in many autoimmune diseases including dermatomyositis.  You need an evaluation as soon as possible!!  I hope you see this.  Quix

[kitlyn]

Hi : I was taken ill last July 2006, VERY sudden. I wa slaways healthy except  MVP w trace regurg. I got so weak after losing 15 pounds dr's all thought it wa sthat at first..but my head pressure and severe weakness, stroke like symptoms  in my jaw felt as though i wa shavinga stroke ..no joke.. I went to ER twice they all said it was anxierty. Two spots on brain.. no tumor. Vasculitis test s all normal.. Neuro suspects MS ,.. i felt better in winter now w the heat back ..summer i feel the swallowing difficulty as you are expressiing// i am thinking the autoimmine thing w me too. I feel for you..this is terrifying.. thank go i have no kids.. but hubby whos very unsupportive..left me twice since all this... see  a neuro keep at it... the answer will come , Peace to you K

[maz12]

Hi

I have CFS and strange symptoms now for a year. Mine have included muscle weakness, tingling, numbness, chronic fatigue, palpitations, arrythmias, anxiety, eye floaters, (but no probs with nails etc). U should look up the effects of candida albicans. This is responsible for no end of problems and can be a cause of some of the CFS symptoms listed above. It can also cause a coating on the tongue. Excess candida in the body can be remedied by diet. Might be worth a try, at least. Im beginning to think this is what could be wrong with me too.