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any advice please

Hi There

I am new to this forum and wondered if someone would kindly give me some advice.

I am fortunate that I have a very understanding GP he has agreed to refer me again to the Neuro and has suggested that a possibility is that I have MS or some Neurological disorder.   I have done a time-line below.

I did get a referral to a Neurologist in 2008 and was told that my symptoms were probably attributed to migraines!

I had a lot of episodes of SVT and palpitations in the last few years but Bisoprolol Beta blockers seem to be keeping it reasonably under control and I rarely get headaches now.

The most recent problem has yet again been abscesses under my teeth. ( I have had a least 36 abscesses) After 7 days of Amoxycillin and Metranidazol the pain was not being relieved by painkillers and  my dentist sent me to the Oral Maxilla facial unit at the hospital. I went to have four teeth removed under local anaesthetic the next day. The dentist used a local anaesthesia without adrenaline due to a previous adverse reaction. Whilst waiting for my mouth to numb I passed out and apparently was unconscious for 7-8 mins. My blood pressure was unrecordable at first and then shot up to 210 systolic over 186 diastolic. I had a severe headache, dilated pupils and shook uncontrollably for at least two hours. The dental unit transferred me to the A and E department and they kept me under observation as my BP remained unstable for several hours. They said that I had probably fainted due to an adrenaline reaction to the local anaesthetic and have advised that I get a referral back to the encrinologist.

My main problems at the moment are worsening of short term memory, cognitive function, knowing what I want to say but forgetting words. unable to concentrate on anything.  Weakness in my upper body, constantly dropping things. Worsening of crawling sensations down my back R side of spine between shoulder blades also sensation of bubble popping under skin.

I feel so frustrated as I have had stop my studying at present and have been unable to work since november due to the fatigue and weakness. I am really beginning to get desperate to know whats wrong with me.

I am fortunate that I have a very understanding GP he has agreed to refer me again to the Neuro and has suggested that a possibility is that I have MS or some Neurological disorder.  

I am really sorry I know that there is a lot of information in my post but I really don't know what to do anymore. Please does anyone have any ideas what could be wrong with me?

Kind Regards
Jan

current medication

Trandolapril 2 mg   1 x day
Bisoprolol         2.5 mg 1 x day

Levothyroxine sodium        200 microgram 1 x day

Sulfasalazine 500 mg   2 x day

Fluoxetine 20 mg 1 x day

Salbutamol 100 micrograms inhaler as required

Diclofenic sodium  MR 75 mg 2 x day

Lansoprazole 30 mg 1 x day


My timeline:
age 11 yrs - Possible TB chronic chest infection treated with antibiotics for almost 1yr.
( bouts of bronchitis and pneumonia since)

12 - 19 yrs - repeated bots of Tonsillitis.

age 16yrs - started suffering fatigue.

Age 23 yrs - Son born - difficult labour - severe should dystelsia, haemorrhaging.

Age 27 yrs- Daughter born. Lost baby weight after 3 months.

Age 29 yrs -Sudden weight gain, fatigue. diagnosed with underactive thyroid

Age 36 yrs - Recurrent Tooth abscess's had a cyst removed from my jaw 10 years ago.

April 2004 - Endometrial ablation to treat heavy periods and anaemia.

Jan 2006 - spent 10 days in hospital with double Pneumonia.

Jan/feb 2006 - Blurred vision, balance problems, tingling numbness. Ref to Neuro for MRI report reads:
The cerebral ventricles are normal in size shape and position. The right temporal horn is a little dilated but this is thought to be of no significance. There is a single high signal focus in the left frontal white matter with smaller similar lesions elsewhere but these are non specific in type.
The basal arteries and dural venous sinuses are patent. No cranio-vertebral junction abnomaly is shown.

October 2006 - Fatigue and generalised pain. Blood tests showed raised ESR.
Rheumatologist did Nuclear bone scan - Conclusion of results: The appearances are suggestive of Sacro-illitis and spondylo-arthritic changes. including minor arthritic changes to AC joints both shoulders, sterno-clavicular joints, knees, ankles and mid foot region.

Aug 2007 - Surgery on Left Shoulder - Shoulder resection arthroplasty.

Nov 2007 - Headaches and electric shock sensations R arm
.
Apr - Nov 2008 - Following episodes paroxysmal hypertension, PSVT's, palpitations, headaches and flushing. Endocrinologist tested for a possible Pheochromacytoma. 24hr urine showed high levels of noradrenaline but CT and MIBG adrenal scan were negative.

Aug 2008 -  Finally saw Neuro again but felt my symptoms related to Basal migraines.

June 2009 - 24 hr tape recorded 2 episodes of SVT which settled spontaneously.

June 2009 - Problems with constantly needing to pass urine at least 2 years - had Urodynamic studies done repot states: no vaginal laxity and moderate strength in pelvic floor contractions. Demonstrates detrusor overactivity and not stress incontinence.

July 2009 - tingling in feet and numb patch on right thigh.

September 2009 - Routine follow up appointment at respiratory clinic. Consultant feels that recurrent chest infections are due to Bronchiectasis.
Crawling sensations down back and numb fingers L hand.

October 2009 - All blood test normal - raised level of Serum C reactive protein.

October 2009 - MRI Scan Cervical spine following several months of neck pain-
Report states: Mild straightening of cervical spine with normal height of vertebral bodies and normal marrow signal. The C4/5 disc shows left paracentral herniation with mild indentation on the thecal sac and mild compression on the left C5 nerve root.


Early Nov 2009 - Sudden blurred vision and loss of colour vision. Improved after 2 weeks although close up vision deteriorated. Opthamologist diagnosed Optic neuritis.
I have had previous episodes of similar blurred vision over many years but not as bad as this time.


Oct 2009 - New Rheumatologist Diagnosed Fibromyalgia.

Late Nov 2009 - Surgery Hysteroscopy and endometrial abalation after 5 months of slight bleeding.

Nov 2009 - worsening of short term memory, cognitive function, knowing what I want to say but forgetting words. unable to concentrate on anything. fatigue, bouts of irritability and anger( always been really placid person) Crying every day. Doctor prescribed anti depressant.
Depression improved but still problems with concentration and memory etc.

Dec 2009 - Still problems with memory etc. Worsening of crawling sensations down my back R side of spine between shoulder blades also sensation of bubble popping under skin.

Jan 2010 - Dental abscesses under 3 teeth and infection spread to teeth and jaw upper and lower right side.

Feb 2010 - Less fatigued.
2 Responses
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1181178 tn?1320783461
Hi,
I have had some of the same symptoms as you. But I just unofficially got diagnosed with an autoimmune disease caused by an infection in a biofilm. Let me first off tell you my story...see how they match up.
From the beginning... I was about 12, Had my tonsils and adnoids removed...I was in pretty bad shape, always getting sick, horribly bad breath, spoke through my nose...the usual.
Then as soon as I hit puberty a year or so after I had terrible episodes of what was later diagnosed as Baslar Migraines. They would start with a personality change, moodiness for a day or so prior, then it woud peak and I would black out or collaps, partial parralysis of my limps, severe pain, no vision, couldn't talk, respiratory distress and inconsistancy, shaking or almost seizing. This would last a few hours or so, then I would slowely come out of it, most times with out hearing, or vision. It would gradually diminish then I would have a complete memory loss of the whole day or two. They were brought on by stress. I had the last one when I was 19 or so.
I was then completely healthy and active, got married and in November of last year I had a miscarriage at around 6 weeks. No obvious reason to why I miscarried.
That month I also moved down from where I grew up in Oregon to live in Arizona.
Last April 09 I suddenly one night at 9pm I felt as tho I got hit by a train. Every muscle in my body ached and hurt, felt soooo sore. It went away the next morning and then once it hit about 9 that night it came back. This went on for about a week only during the night. On the 7th day it didn't go away in the morning. I went to my GP and he did a lupus ANA, RA factor, and SED rate. ANA and RA normal, SED rate high.
Since then I've been to close to 12 doctors, 3 rhuemys, 2 neurologists, 1 lyme disease specialist naturopath, 1 CDC lyme disease specialist, 1 GP lyme specialist, 1 oncologist and now a rhuemy/immunologist at OHSU.
It started out I only had SED rate CRP elevated, then my RA factor, IgM lyme WB positive, IgG lyme WB neg, clean MRI, and now I have elevated light chain protiens, possible early lymphoma markers, really high WBC, high ANC, high metabolic protien, and high IgG in the immunoglobulin profile. Normal ANA, thyroid tests, vitamin levels, and urine protien analysis.They supposively found a bio film community with an active infection, supposively responsible for my symptoms.
My symptoms are: muscle aches/pains/soreness, joint pain/swelling/arthrialgia, bone sharp/deep aching pain, memory loss both long term and short, confusion, extreme fatigue, mood swings, disterbancy in my menstral cycle (super heavy), difficulty focusing vision, chest spasms, sharp chest/back pain, unexplained high non-responsive fever lasted 9 days, mouth sores not from a virus, rashes, sensitivity to heat, but my main and most dibilitating symptom is the pain. I cant find a way to relieve it.
Currently taking: Flexeral, Diclofenac, Biaxin 500mg, Plaquinal, and Vitamin d and B12.
I was on tramadol and soma but GP was scared of dependency issues.

When I went to one neurologist he thought it might be some sort of stress induced Basil Migraine. Did a EMG and it had a slight distruptency but the thought it may be due to the meds.
Another Neurologist was convinced it was MS, MRI ruled it out.
#1 Rheumy thought it was fibromyalgia but no tender points. Tried Lyrica, did nothing.
#2 Rheumy thought it was late onset Juvinile RA (runs in my family), but only swelling and no redness. Plus it didn't explain all symptoms.
#3 Rheumy from OHSU doesn't think it is any of these, and not the infection disease. Some other autoimmune disease.
Oncologist suggested allergies. That was not it. He found more protiens pointing to Multiple Myeloma, but this cancer doesn't cause my symptoms.

I am only 22 years old. Can no longer work and some days I'm so stiff and in pain I feel like I'm 500lbs. I eat very healthy, avoid magnesium like the dr told me to. I take vitamins and stay as active as I can. Some days it's HORRIBLE and some days I can ignore the pain. They are not convinced that I have this biofilm infection autoimmune disease.
I dont have nearly as many physical outwardly appearent symptoms as you, but it caught my eye...the simalarities.
Helpful - 0
Avatar universal
I have had many of the problems you talk about.  My problem was caused by the many root canals and amalgam (mercury fillings) in my mouth.  I had the work done on my mouth by a mercury free dentist who understands the problem.  It has to be done the right way because releasing mercury in the body is very serious.  I would suggest you read the book "Solving the MS Mystery" by Hal Huggins and he explains this problem to you.  After reading the book you will have an idea on what you need to do.  

There are things you can do to detoxify the body of this poison.  I would suggest the book "Prescription for Nutritional Healing" which will tell you the supplements you need to detoxify the body.  Also the Paleo diet has shown good results in treating autoimmune disease.  If you start taking the recommended supplements and concentrate on a fruits and vegetable diet I think you will see results.  You need to get your body healthy again so you can get off the drugs which are not good for the body.  You might want to look up "Oil Pulling".  
Helpful - 0
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