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Painful VF? Disseminated?

 
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klampey



Joined: 16 Oct 2010
Posts: 12
Location: Tehachapi, CA

PostPosted: Sun Feb 05, 2012 2:59 pm    Post subject: Painful VF? Disseminated? Reply with quote

Hi Everyone,

I'm so happy to have this site and you all are so caring to everyone. You guys helped me out late 2010 when I was diagnosed with VF. It was a rough few months of being so ill that I could barely function. I literally had to drag myself out of bed to take care of my kids! It was also a lung cancer scare on top of pneumonia and sinus infections. In any case, I find myself here again because I think it might have disseminated and wanted your thoughts. I just ordered the Valley Fever Epidemic book which should be here by Wednesday.

I became very sick with sinus infections and then pneumonia in Aug and Sep of 2010. Chest xrays showed a mass in my right lung which my primary doctor thought was cancer (thanks for that scare doc). Went to a pulmonary doc who told me it was not cancer but it was more than just pneumonia. He finally diagnosed me with VF despite having low titer of 1:2. The mass disappeared over a couple of months but I still had bad chest pain. Dr said it was just scar tissue. My last visit with him was March 2011. The chest pain eased up but it never went completely away. There has always been a tightness or heaviness with shooting pains at times.

I just lived with the discomfort because the doctors could not find anything wrong with me. In August 2011 I had severe pain in my right foot and leg and my joints and muscles started hurting. Pain in my foot and leg went away after a month or so but my joints and muscle pain were getting worse so I went back to the Dr in Nov 2011 who ran several blood tests including another cocci titer test and tested for autoimmune diseases. Everything came back normal but my titer score was 1:4. He ran an additional test which came back negative so he said I didn't have VF and referred me to a rheumatoid Dr thinking I must have Fibromyalgia. I put off going to yet another Dr because I have been to the Dr so many times and they can't find anything wrong and I was beginning to feel and look like a hypochondriac.

My muscle and joint pain is primarily in my hands, wrists, arms, elbows and shoulders. I leave myself bruises from massaging them to ease the pain. I started getting buzzing and tingling in my hands and muscle twitching and weakness. My feet have started tingling more and my 3rd and 4th toes go numb. It feels like even my bones hurt (in my hands especially and arms). As of yesterday, my hands tingle/buzz continuously. My chest still hurts and feels "heavy". Mornings are best because I wake up stiff and without much pain. My pain becomes worse as the day progresses and is sometimes unbearable by the end of the night. However, some days are not very painful at all.

I finally made an appt with the rheumatoid in Dec 2011 which they were booked a month out. My symptoms became more and worse in Jan 2012 while waiting for my appt. It is a very long list and I didn't relate them being together until they all started happening often. Along with my muscle and joint pain I have:
-muscle spasms, weakness
-I'm losing mobility in my hands
-I have floaters/lines in my left eye (they started in January)
-my jaw hurts like my joints do and I also get shooting/stabbing pains
-my neck lymph nodes are swollen, hard and painful
-neck pain - tender and sore like my muscle and joints
-I sometimes have difficulty swallowing and catching my breath
-my hands are very cold
-my skin itches
-my eyes go out of focus and it's hard to bring them back in focus
-I get dizzy and disoriented at times
-I had a seizure about a month ago which that is what made me call the new Dr (did not know it was a seizure when it happened - Dr said it was when I described what happened - there was a loud pop/buzz in my head and my head just fell almost hitting the desk before I snapped it back up, like my neck muscles just gave out - I was nauseous and dizzy after it happened)
-memory loss - sometimes I can't think of the simplest words when talking
-pressure on my forehead - almost like my skin is too tight - really hard to explain

So the Rheumatoid Dr sent me to a neurologist because of the seizure and the Neurologist ordered an MRI of my brain and neck to see if I have MS. The MRI was this last Monday and I have not received a call with results so I am assuming they didn't find anything otherwise they probably would have called right away. I am going to call the Dr office tomorrow to find out - they told me 5 business days. From my own research, MS is not typically painful but can be for some and while it doesn't have to run in your family it usually does. I do not have a family history of MS.

I got to thinking how I can be negative for VF with a titer of 1:4 and started my VF research again and have been reading posts from you guys about being in a lot of pain. I just sort of had an epiphany on Friday that this is probably VF acting up again which is why no one can find anything wrong with me. I'm miserable and want to feel better and like I mentioned before, I look like a crazy person and hypochondriac.

Besides the pain, does VF cause the other symptoms that I have? The tingling and cognitive issues and eye floaters? This has been a very frustrating and lonely experience. Thanks for taking the time to read this very long post! Smile
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susan ulmer



Joined: 04 Oct 2010
Posts: 418
Location: albuquerque nm

PostPosted: Sun Feb 05, 2012 6:53 pm    Post subject: Reply with quote

God, I am so sorry for your suffering....While you are waiting for your book, you might look at the page that appears when you click on the logo. In the upper right hand corner, there is a section giving you VF information. I just watched Dave's video [also on the page] about possible symptoms with VF. I don't know that any of this will make you "feel" better but you will see that so much of your suffering is linked to the miserable cocci and you are not crazy or a hypochondriac. How overwhelmed you must feel, dealing with so many debilitating things concurrently and no one giving you any answers.

If there was only a definitive test and defined symptoms, as horrible as this disease is, I think it would be so much easier to deal with. All these weird things happen and it doesn't seem logical to put them in the same pot and stir them together to make VF but that's how it works. Doctors are like the blind men and the elephant. Because they can't pinpoint things it seems they are left with their tried and true diagnoses and even if they don't really apply it does serve to scare the **** out of all of us. I'm saying this in reference to the possible MS, hopefully it will be like the cancer scare and totally bogus. With a titer of 1:4, you are not negative for VF [see Dave's last post] In fact it seems like your titers are getting worse and maybe you should find an ID doctor that knows about VF and the pain it causes before you are bounced around much longer. Mis/late diagnosis of VF can cause serious complications. Actually low titers don't really have anything to do with how you feel. Nothing is worse than to be really suffering and to have the doctors throw words at you that are scary and at the same time do nothing that helps you feel better.

You are in my prayers. I hope you find answers really soon and feel more in control and better quickly...and try not to let your head blow up from the stress.

All the best,
Susan
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susan ulmer



Joined: 04 Oct 2010
Posts: 418
Location: albuquerque nm

PostPosted: Sun Feb 05, 2012 7:19 pm    Post subject: Reply with quote

You know, just to babble some more, some of what is going on in your head might have something to do with screwed up sinuses..the tightness in your forehead, the spots in your eyes, the dizziness...I'm surprised the doctors don't look at this. My mom's VF disseminated to her sinuses and that was what killed her. I have also lost my sinuses to cocci and it has basically traveled around in my head causing all kinds of strange things. One of my stupid solutions that seems to help, if it is your sinuses, is to put a bandana tightly around your forehead and cotton in your ears. That seems to equalize the pressure even if it seems that you don't have anything wrong with your sinuses. It's such a cute look. You might try it and it might not help but...The brain fog is just there...I can't remember half the words I used to know which is why my posts are so literarily challenged.
All the best,
Susn
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klampey



Joined: 16 Oct 2010
Posts: 12
Location: Tehachapi, CA

PostPosted: Mon Feb 06, 2012 8:19 am    Post subject: Reply with quote

Thank you, Susan. I will look into an ID doctor. I'm so sorry that you are suffering and that you lost your mom. One would think that doctors in an endemic area would know more about it. I'm in Kern county and caught it in Bakersfield. I tried to see Dr. Johnson when I was first diagnosed but my name must have been lost because they never called me back. I think I will call his office again.

Bandanas and cotton could be a cute look Very Happy
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JeanK



Joined: 17 Jan 2012
Posts: 42
Location: TUCSON

PostPosted: Wed Feb 08, 2012 11:28 am    Post subject: Bloody Valley Fever - Please be careful Reply with quote

Klampey,

When I was first checking out the VF sites, I came across Brian Abner's, [b]Bloody Valley Fever - Please be careful[/b] web page and found it helpful. It's like a short version of this blog and the VF book. You might want to take a look. Although it doesn't replace this blog or the book, I found it does provide me with a handy reference when I get confused with the varied symptoms.

Meanwhile, I've been very achy, tired, and sore and suspect that my VF is starting to act up but like you, it's hard to deal with so many symptoms manifesting at once with no clear diagnosis.

Susan has been very helpful to me and a fine support so hang in there and I wish you the best in caring for your family while dealing with nastiness.
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MommyDM



Joined: 31 Jan 2012
Posts: 29
Location: Kern County

PostPosted: Tue Mar 13, 2012 7:15 am    Post subject: Reply with quote

Klampy,

You have to have a referrel to see Dr. Johnson. I actually live pretty close to you (in Rosamond) and I go to Mojave/Tehachapi Rual Clinic, they put in my referrel but told me that it would take some time because he is located at KMC and the referrels always take a long time. I also have a referrel into a Pulmonary Specialist that was placed 2 months ago and still no word. Keep your head up, Im sure you will get an appointment soon. I hope your haveing a better day today, I too have had all the same symptoms and its not fun.
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VF55



Joined: 19 Dec 2011
Posts: 16
Location: ventura county, california, usa

PostPosted: Fri Mar 16, 2012 8:37 am    Post subject: Reply with quote

Hi Klampey,

I was reading your symptoms and I too have many of your symptoms which i highlighted. Notable was that you said you have cold hands. My latest titers indicated 1:8. Last month I was 1:16. On 800 mg Fluconazole since 12-20-12.
Cold hands are the first sign I'm not feeling well. When I first wake up, have breakfast, I feel good, and within 30 minutes I start to fatigue. The later it gets the worse I become. If I am on my feet for 5 hours. and I go to the store bank, I feel very anxious, and make poor decisions, make a lot of mistakes. I get short of breath and short tempered. I call it the Dr. Jekyll Mr. Hyde syndrome. I also see shooting stars from the rear of my eyes. New problem is my shoulder joints are so painful I can't sleep on my side.

I am getting the MRI today and a Lumbar Puncture next Wed. I asked Dr. Johnson about the cold hands and he said he didn't recall other VF patients saying this, but he added may they do. I was surprised because I thought it was part of the disease/drug. If I lay down and relax, the cold hands stop and warm up.

Good observations you mentioned: On choking, maybe it's the fatigue, but I choked twice just eating, couldn't breathe for 20 seconds with food stuck in throat. This has never happened to me before, it's crazy. I don't take any other drugs, except for IBP, and of course no alcohol on 800mg Fluconazole.
To your list I can add Fatigue, headaches, skin rashes, hair loss, High Anxiety (not the movie)

Great Observations; From your Post;
I'm losing mobility in my hands
-I have floaters/lines in my left eye (they started in January)
-my jaw hurts like my joints do and I also get shooting/stabbing pains
-my neck lymph nodes are swollen, hard and painful
-neck pain - tender and sore like my muscle and joints
-I sometimes have difficulty swallowing and catching my breath
[b]-my hands are very cold [/b]
-my skin itches
-my eyes go out of focus and it's hard to bring them back in focus
- I get dizzy and disoriented at times

-memory loss - sometimes I can't think of the simplest words when talking
-pressure on my forehead - almost like my skin is too tight - really hard to explain

Thanks and Best Regards,
[/b]
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vfs_admin_Sharon
Site Admin


Joined: 19 Dec 2004
Posts: 99

PostPosted: Sat Mar 17, 2012 9:30 pm    Post subject: Reply with quote

VF55 and ALL VF people,

The subject of VF and the eyes are very rarely discussed as well as other eye issues that occur. Having stars or flashes of light in the corner of the eye (sometimes with the image of lines or stars like a sparkler) can be caused by a vitreous detachment and anyone experiencing this should immediately go to see a Retinologist. The vitreous gel turns to a liquid state as the years go by and a vitreous detachment is actually very common but doctors never seem to tell patients that this is a natural occurrence to expect over time. I asked my doctor why no one warns about it and he replied "because nobody wants to hear about things like this until it happens to them." It is very much like VF; nobody wants to know about it until it happens to them either.

The danger is that if left unchecked and identified it could lead to a retinal detachment and loss of vision and none of us what that to happen. It is also responsible for dizziness and even nausea. Webbing and floaters increase with that condition as well.

I am not trying to scare anyone but VF itself can also cause many eye conditions. Anyone who has especially contracted cocci meningitis should be aware that glaucoma and optic nerve damage is possible. You should see a specialist in this field and have pictures taken of your eyes to be sure there is no damage. This can happen many years after your initial VF illness so do not disregard this information. Your sight is too important to ignore this warning. I have been doing a lot of research in this arena as it is near and dear to my heart as most of the above has happened to me and a regular eye doctor missed all of it. Don't let this happen to you.

I plan on doing a more in-depth video on this subject.

Sharon Filip

Founder, www.valleyfeversurvivor.com
Co-Author of Valley Fever Epidemic www.valleyfeverepidemic.com
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DianeM



Joined: 26 Sep 2011
Posts: 11
Location: Pennsylvania

PostPosted: Fri Mar 23, 2012 6:33 pm    Post subject: Painful VF? Reply with quote

When you said your skin itches where does it itch? Is there anything visible where the itching is? Is it all over your body or in same places? Please be specific.

I mostly itch in my hands. Sometimes it has been my feet. I don't have a VF diagnosis but I am still wondering if that is what it is. Going to arthritis dr. in April to see what they say. Had joint pain for over 10 years and I am tired of it and the brain fog, fatigue.
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fuegoray



Joined: 04 Aug 2012
Posts: 34
Location: Paso Robles

PostPosted: Sat Aug 11, 2012 11:02 am    Post subject: Reply with quote

We also live close to you in Paso Robles. I have disseminated VF and fungal spinal menigitis for 9 years. It developed into hydrophylus in Feb 2012 with a TIA stroke. I also had double retina detachment surgery approx. 6 years after being diagnosed. The titer test is not the best or most accurate. That being said, the longer you wait to be treated the more time the fungus can grow and spread through out your body and become disseminated, the worst!

As far as calling the Dr.'s you have to be so pro-active! Thank goodness for my wife, she calls all of my Dr's and labs all of the time for updates, make appointments, check for results. Please do not wait for the Dr.'s to call you because you will always wind up at the end of the list. Squeaky wheel gets the grease. Suggestion, put your doctor, lab, and any people related to your complications on speed dial on your phone including their fax numbers. It's handy and makes it easy to be pro-active when you are in the head "fog" especially if you do not have anyone to really help you.

I've been working with Dr. Gina Suh at Stanford and has been a great help. You know how you feel and often time you are your best DR. Sincerely, Todd Central coast ca
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vf survivor 1



Joined: 17 Feb 2009
Posts: 48
Location: maui,hawaii

PostPosted: Tue May 28, 2013 6:21 pm    Post subject: Reply with quote

I have all of these symptoms described....No drs here in Hawaii will put me on meds...I have never been on antifungal meds...contrqcted vf at age 16..I am 52 and the vf has desimentated throughout my body...I totally feel your pain everyone..I live in silent pain everyday...god bless you all...praying someone finds a cure...my two sisters are on disability due to this disease..Im Crying or Very sad
_________________
active desmentated vf for 5 yrs..
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idoncov



Joined: 15 Aug 2012
Posts: 19
Location: Half Moon Bay, CA

PostPosted: Wed Apr 09, 2014 3:28 pm    Post subject: Reply with quote

VF55 wrote:
Hi Klampey,

Cold hands are the first sign I'm not feeling well. When I first wake up, have breakfast, I feel good, and within 30 minutes I start to fatigue. The later it gets the worse I become........

If I lay down and relax, the cold hands stop and warm up.

[/b]


Exactly!!!!

This has always been my barometer of when things are about to get worse. I've had VF for 2 years now and it takes more get me to this state but eventually it will happen if any sign of flu or additional ailments come along. I attribute this to our systems being drained and go into some sort of alarm mode when we stress them out. This never occured before VF. The first year of VF my feet were continually cold and I would do sitzbaths to stop it (that's another method of recovering body heat but not as long lasting as just laying down). 2 years later my body seems to be able to maintain it's normal temperature unless something else knocks it back on it's butt.
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