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Possible CFS. Ruled out everything else.

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Old 09-19-2012, 05:29 PM   #1
Join Date: Sep 2012
Location: Haverhill
Posts: 3
ledzepp94 HB User
Possible CFS. Ruled out everything else.

Hi All,

I came across this board and found it pretty interesting. Let me start off by saying the last 3 years of my life have been an on and off hell. I have literally had the million dollar work up in medical tests. I live in Massachusetts so it is one of the best areas in the world for medicine. Anyway, I started to feel like crap around the fall of 2009. At this point I had just quit my job at a restaurant and started my own business as a web developer working from home. I started to get tired a lot and by february 2010 I was sleeping all the time. I had gone to the doctors around november 2009 because I wasn't feeling great so he did some blood work and my White Blood Cell count was around 19,000 when the normal is between 4-11,000. He checked again in a few weeks and it was down to like 15,000 and then checked again a couple weeks later and it was like 13,000. He sent me to a hematologist/oncologist that I saw for 6 months about 2 to 3 times a month. She tested me for tons and tons of stuff and it all came back negative. At that time my symptoms were severe fatigue, weight gain and brain fog.

I also saw an infectious disease doctor, tested for infectious diseases and parasites and so forth which were all negative. Around the beginning of summer of 2010 I started to get head pains in the back right of my head, dull achy pains that wouldn't go away. This along with the fatigue and the brain fog had me worried so I saw a neurologist who gave me an MRI without contrast, I also had a CT scan without contrast at an ER about 3 months prior. All came back fine. I must have had atleast 35-40 blood tests in the past 3 years, all blood work pretty much fine except for a slightly raised white blood cell count of between 10-13,000 usually. I asked the blood doctor a million questions about cancer and so forth and she said we tested you for all of that stuff. She tested me for lupus, HIV, and other autoimmune stuff.

I do have Hashimoto's thyroiditis which I was diagnosed with in 2006. The levels are fine though. I have seen every type of doctor except a gynecologist, and since I'm a man I don't think I need to see one . Anyway it seems like these symptoms come and go in cycles. I'll be fine for a week or week and a half and then feel like crap for about 2-3 weeks. The symtpoms I consistently have are fatigue, brain fog, muscle aches and most annoying of all is this squirmy like, almost split second seizure like feeling in my brain. I have been assured by my neurologist that it isn't a tumor and it isn't seizures, but of course he did not offer up advice of what it may be. So to wrap up my profile looks something like this:

- 27 year old male

- Has Hashimoto's Thyroiditis since 2006 (under control)

- Been feeling like crap since 2009

- Have had every test under the sun (MRI's, blood tests, CT scans, EEG's) which have all come back fine except for a slightly raised white blood cell count.

- Pimples/Papules/Postules that are sometimes painful, I get them on my chest, stomach, thighs and occasionally legs and arms.

- Constant fatigue and occasional muscle and back aches.

- Some days are better than others, also have what seem to be cycles

- Most concerning symptoms are the neurological ones: brain fog, concentration, fatigue, and this squirmy/split second seizure like feeling in the back of my head.

Does this sound familiar to anyone? I feel like im in some sort of purgatory or something and I need some sort of feeling that I'm not alone here as this has affected my work and my life in incredible ways.

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Old 09-20-2012, 12:36 PM   #2
MaynardsPet's Avatar
Join Date: Sep 2012
Location: Tulsa, OK
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MaynardsPet HB User
Re: Possible CFS. Ruled out everything else.

From what I've read, CFS manifests itself so differently in people. Just find a complete list of symptoms and its bananas. My most prominent symptoms are fatigue, brain fog, and joint and back pain. I've only had a few tests done to rule out other causes. Waiting on health insurance before I am given a full diagnosis following many other tests.
I've always had the ringing in my ears (too many concerts), so I wouldn't be able to count that as a CFS symptom, as CFS is relatively new for me. When I first started to develop severe fatigue, I immediately had my thyroid tested. It seems to be very similar symptoms. When it came back normal (along with a few other tests) I was so frustrated, I felt crazy and was fearful that it was all in my head.
I currently work in retail and every day is harder than the last. We are around the same age so I can understand the feeling of purgatory, of knowing I should be able to do more than my body lets me.
Are you taking any medications or supplements to help you?
Best of luck

Old 09-20-2012, 12:48 PM   #3
Join Date: Sep 2012
Location: Haverhill
Posts: 3
ledzepp94 HB User
Re: Possible CFS. Ruled out everything else.

Well, I was taking 50mg of Zoloft for a while. I also have Lorazepam when I need it. And of course my thyroid medication. The scariest part of it all is the squirmy/seizure like feeling. It makes me immediately think of brain tumor but I had an MRI without contrast done in July 2011. I also had an EEG done about 2 months ago.

It sucks because I can't go out with friends for an extended periods of time without getting run down, headache and fatigue/brain fog. And forget going on vacation I would just be sleeping. I would like to get another MRI this time with contrast but the neurologist says that is silly and insurance wouldn't cover it anyway.

I also get the aches you talk about. Mostly in the upper back/chest/neck areas.

Old 09-20-2012, 01:06 PM   #4
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Join Date: Sep 2012
Location: Tulsa, OK
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MaynardsPet HB User
Re: Possible CFS. Ruled out everything else.

I woke up early this morning from back pain, so I used my recently purchased TENS device on the site and it helped out a lot. If your pain is pretty severe for most days I recommend trying one out. I have found that Tramadol helps the best with my pain, I just worry about taking it every day. I become addicted to things very easily and the last thing I need is to start popping pills all the time.
Its hard to say if another MRI would be worth the cost, unless you have reason to believe you have an affliction that couldn't be found by any other test. Just months before my CFS symptoms started I found out that my father had a bicuspid aortic valve. As a result I underwent a slew of tests. I know that I will eventually have to have the tests again but I am apprehensive. For all my life I've had migraines and neurological problems, with MRIs and CTs that always came back normal. At this point in my life I almost anticipate the let-down and just don't want to be bothered anymore.

Old 09-20-2012, 01:52 PM   #5
Join Date: Sep 2012
Location: Haverhill
Posts: 3
ledzepp94 HB User
Re: Possible CFS. Ruled out everything else.

I think tylenol works decently. The advil and aleve don't do anything for me. I just got a call back from my neurologists office telling me they are not going to order the MRI. So I guess there is nothing more I can really do.

I also know that because i'm a computer programmer that I sit behind a computer all day which affects my spine and my neck and also I don't get a lot of exercise.

I think at some point we just have to trust the doctors. I saw a hematologist/oncologist for over 6 months because of my constant slightly raised white blood cell count, all other counts were fine. She tested me for everything and everything always came back negative. I read that White Counts can be slightly off with CFS which would make sense for me.

I keep a daily log of symptoms and have been doing this for over a year now. I also keep a document of all the medical tests i've had done and the doctors i've seen. I just open that up and it makes me feel better.

Here is a little example of the stuff I put together that really calms my anxious mind when it comes to this:

Tests in Early 2011 - 2012 that were Negative:

Hepatitis B and C = Negative
EEG = Normal (6/27/2012)
Hypo/Hyperparathyroidism = Negative (2/21/2012)
HIV = Negative (12/2010 and 1/20/2012)
Syphilis = Negative (1/20/2012)
Cardiac CTA = Normal (1/2012)
Thyroid Ultrasound = Normal (1/23/2012)
Holter Monitor and EKG = Normal (12/2011)
Leukemia = Negative
Lymphoma = Negative
Cushings Disease = Negative
Parasites = Negative (12/2010)
Liver Inflammation/Enlargement = Negative
Gallstones = Negative Ultrasound (september 2011)
Chest XRAY = Normal (several, most recent in mid December 2011)
Neck/Upper Spine XRAY = Normal (spring 2011)
Soft Tissue Throat XRAY = Normal (spring 2011)
MRI of Brain no Contrast = Normal (summer 2011)
CT Scan of Brain no Contrast = Normal (summer 2011)
Sinusitis = Negative (summer 2011)
Lupus = Negative
Stress Test and Echocardiogram = Normal (2/2011)

Tests Found:

1/3/2011 - CT Scan of abdomen and pelvis = Fatty Liver
8/22/2011 - Thyroid Blood Test = TPO antibodies 174, should be none. Indicates Hashimotos Thyroiditis.
9/2011 - Ultrasound of right Abdomen = 2.3cm Hemangioma on right hepatic lobe near the porta hepatis.
9/2011 - Spit Adrenal Test = Low, could be reason for fatigue. Cortisol Sum is 18.6 and supposively normal is between 23-42.
11/7/2011 - Dermatologist - Keratosis Pilaris (means nothing! benign like acne!)
1/6/2012 – Low vitamin d and positive mono test. Very slightly raised eosinophils (550). Was put on 50,000 IU of Vitamin D for 4 weeks.
1/23/2012 – Thyroid Ultrasound was normal but they found a 1.4 x 0.8 x 1.1 cm mass with echogenic center/hilum that is benign and is commonly seen in hashimotos thyroiditis which I have. Highly suggestive of a benign lymph node. Hyperparathyroidism should be excluded clinically but it is unlikely to be a parathyroid adenoma (benign).
4/07/2012 – Allergic to Oak trees (3 out of 5), mildly allergic to some mold (1 or 2 out of 5). Did better on pulmonary function test after using the inhaler medicine (33% better than without the medicine), but the test was only slightly off so he said he wouldn't even call it asthma and he wasn't going to give me any medication.

Overall Doctors Seen:

Primary Care Physician - Often
Ear Nose and Throat – Summer/Fall 2011
Endocrinologist - 12/2011 and 1/2012
Oncologist/Hematologist – 12/2010 – 5/2011
Physical Therapist/Chiropractor – Summer 2011
Infectious Disease Doctor – Late 2010 and 1/2012
Cardiologist – February 2011 and December 2011 - Current
Neurologist – Spring/Summer 2011
Gastroenterologist - October 2011
Psychiatrist – Summer 2011
Dermatologist – November 2011
ER Doctors

This seems to be a good strategy for me, I'm not sure if it will work for everyone though but I found it has really helped in knowing the efforts I've taken and the doctors have taken and all the stuff that has been ruled out. Not to mention i've been like this off and on for the past 3 years.

Hope this helps.

Old 10-15-2012, 07:59 PM   #6
Simple scarce
Join Date: Oct 2012
Posts: 1
Simple scarce HB User
Re: Possible CFS. Ruled out everything else.

Have you been tested for celiac disease or tried a gluten free diet? A lot of people present with neurological problems, in addition to pain, skin rashes (look up dermatitis herpetiformis), and fatigue. It's also linked to Hashimoto's thyroiditis as its auto immune.

I was dx'd with Celiac in May and then Fibro & CFS last month after some symptoms lingered and some new ones surfaced. Gluten free/ dairy free has made a huge difference for me.

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