Lupus? Vestibular? Other?

[tsdaughe]

Back in the summer of 2009, I had a bought of constant vertigo for about 2 months. I dealt with it for a month and then in desperation one night I went to urgent care. The doctor there was actually very thorough. He did a full exam, blood work and hearing tests. They couldn't find anything so he prescribed me meclizine to use PRN. He cautioned not to use it too frequently because my body needed to adjust my balance. I used it when I couldn't bare the vertigo over the next month and then one day the vertigo just magically stopped. I had another bought of vertigo that started in December 2011. This however also came with a weird rash all over my body. Again, went to urgent care because my doctor couldn't see me short notice. They did a full work up and not being able to find anything they gave me steriods for the rash and zolfran for some associated nausea. That worked great until I was being tappered off the steriods and the rash came back along with a bright red rash on my face over my cheeks and nose. Also came severe joint pain to the point I couldn't walk without using walls for support. I looked like a little old lady walking. I went to the ER. They didn't even do blood work. Both the doctor and nurse mentioned Lupus. They gave me a higher dose and longer course of steriods as well as pain meds. They suggested I see a PCP. Well.. I lost my insurance the next day due to divorce. After a month I finally got onto insurance through my work.

I got a PCP who did a thorough workup due to the continued joint pain, vertigo, fatigue, etc. He tested for lymes disease, rocky mountain, thyroid. Those all came normal. Only thing noticeable was elevated sedementation rate and C-reactive protein. Got referred to a rheumy which I saw 2 months later. By then I wasn't working and doing much better. He said "if you have another full on flare, its lupus." Well I haven't had another full on flare. Just a continuation of random symptoms such as swelling of my fingers and ankles, thickening of my ankles and some chest pain at times when I exercise due to inflammation between by chest (per my rheumy). I am in this in between where I don't meet full criteria for lupus but I have "arthritis" basically. I take mobic as needed for that.

Now, since december I have been having vertigo that is just getting worse and worse. It was just a few days a week or less. Now its daily. I have pressure in my ears. I feel like I am floating and a weird feeling of dissocation. Now we are in march and I notice a stiff and sore neck. I went to an ENT. I have minor low tone hearing loss in my right ear which I have noticed. He recommended taking claritin as a vestibular suppresent. Well I am doing that but it is getting worse. I got a head cold and went to my doctor and was prescribed a Z pack for a possible sinus infection. Well I am about done with the z pack and my vertigo, dizziness and the stiff neck is worse.

I don't know what else to do. I am at my wits end. I work on a federal contact so they are very strict about time off. I will be eligible for FMLA in less then 2 months so I am hoping and praying and come to work no matter how bad I feel because I am alread on warning that I will be terminated if I have 3 more sick days in the next 9 months unless I get FMLA.

I didn't mention that I am 31 years old. I have two children. I am single mom. I have good health insurance. Anthem BC/BS PPO. Up until this all started I was running 6 miles at least 3 times a week. I am just now getting back into running again just not near as far or near as long. This is impacting my whole life. I cannot go out and do the things I once enjoyed. I feel sick every single day.

Any suggestions? Anyone else I should see? I don't know what else to do. .

[TheLightSeeker]

Hi tsdaughe.

I'll give it a shot.
Caution with general medical approaches that box your symptoms to fit a certain  established medical profile. In the event you have a mycoplasma
type of an infectious condition, drugs WILL make you worse in the long term.
Here's a list of some common symptoms-one doesn't need to have all of them,as these pathogens are known to dominate various parts and organs, usually on a selective basis.
chronic fatigue,depression, Joint pain or reduced mobility, including rheumatoid arthritis,headaches, vision problems, or light sensitivity, cognitive problems, muscle spasms or burning muscles, Dizziness or Balance disturbance, stuttering or difficulty speaking, breathing problems, cardiac problems, or chest pain or pressure,flatulence, bloating, or diarrhea, lack of bladder control or frequent urination, stomach cramps, nausea, or vomiting, Sinus pain or nasal congestion, impotence, loss of libido, or menstrual or genital pain, sore throat, Tinnitus, or Hearing Loss.
Skin rashes, frequent sores or infections, or yeast infections
coughing heavily or frequent thick saliva clearing,  allergies, chemical sensitivities, or dry or itchy eyes, night sweats.
(I capitalized some of your symptoms).
So you need to rule out such pathogenic infections. VERY CRITICAL!
Do a search here in MedHelp for Dr Garth Nicolson. He's an expert
in this field. Most doctors do not have training and are not up with the
information in this area of medicine and it also happens to be an extremely
challenging job to dx these infectious conditions.
Let me know if you need more info on this.
You may pm me any time also, if you prefer.
Another thing that came to mind -as a lesser possibility-was thyroid dysfunction. I know you were tested, but even with negative findings you could have thyroid issues i.e: type 2 hypothyroid, if you wish to look it up.
Best wishes and hope you get this resolved soon!

Cheers!
Niko

[elbamom]

I don't know about the many symptoms,  but could this vertigo be Meniere's disease? If you add on allergies and a sinus infection that could be three things that are problems. There might be more.

Do you take any allergy medicine other than Clairton? You can try others or like me take 2. I take Clairton and Singular(now generic). The allergy season is just starting. Certain trees can make me get a rash on my body and the only help is to stay ahead of it. Dry skin makes the rash worse. Try an oatmeal bath (there are pre-mixes available) or make your own.(see previous post)
Use lotion too. Did a doc give you a steroid creme for the rash?

Have you tried a sinus rinse like the Neil Med bottle available at Costco, Walmart, Walgreen etc? How about a nasal steriod? like Flonase? This helps reduce swelling in the nose and ear. We see a specialist who does  allergy, asthma, immunology can you try someone there? If the sinus symptoms doesn't go away after the Z pack ask for a different antibiotic.

If on a lot of antibiotic and steroids also take a pro biotic like VSL#3 also at Costo etc over the counter. It needs to be in the fridge.

Also try to boost your immune system with vitamin D3, take 5,000 IU for a month and go to www.vitamindcoundil.org for more info about the importance of D3. When your next  blood work is done ask the next doc for a D3 test to be added on to it. Stay on the D3 . It is a daily vitamin at my house for us all. The sweet spot is between 50 and 70 ml. That is the best for optimal health.

This sounds like you have multiple things going on and hopeful all this will help. Some of these ideas should not be to costly and worth a try. Just a trip to Costco, or Walmart etc. should help you find some of this stuff.

The doc who prescribed the Z pack should be able to do a steroid  creme and a nasal steroid too, both are available in generic.

There are lots of good ideas from people in this community. Maybe other people also have suggestions to try. Let us know how you are doing and what is helping.

Best of luck,
Elbamom