Need Help - return of RSD
 

I need some help separating what might be RSD symptoms from my other autoImmune disorders. I will try to make it brief. 30 years ago I had a partial thyroidectomy for follicular adenoma- benign. 25 years ago I fell down the steps and injured my left foot had severe tissue and nerve damage and underwent surgery for what we thought was a Mortons Neuroma. I woke up in excruciating, unrelenting pain for the next 10 years which was diagnosed as RSD. I went thrrough 10 years of treatment and drugs and finally found relief with Tegretol. My limb had dystropied and had limited mobility, but day to day life way manageable with only occasional breakthrough of spasm and pain when I did too much activity and was relieved with elevation and rest. During those 10 years the RSD did have minor spread to other limbs.

Twenty years later I experienced extreme muscle weakness after hysterectomy surgery accompanied by droopy face and eye ptsosis and trembling, trouble chewing and swallowing, falling and shortness of breath. AFter 2 years of specialist I was diagnosed with the autoimmune disease Myasthenia gravis, and within 6 month another autoimmune disorder Hashimotos hypothyroidism. I am still getting these other disease under control with medication. But I have additional severe symptoms that I can not contribute to those diseases and may be part of systemic RSD. Since my RSD had been under control, I am not up on the latest research. 25 years ago when I went through this, most doctors did not even think RSD was real.

Here are the symptoms I cannot figure out - 1. severe bouts of diarrhea for days. Not attributable to medications, celiac evaluation has been negative.
2. Unrelenting tinnitis that has not gone away even for a second for 1 and a half years. 3. constant lightheadness and equilibrium problems and the constant feeling that I am going to faint but I don't 4. Profuse sweating with any temp over 70 degrees or the least activity like folding laundry. And the sweating is not from the usual places like under arms. I am drenched. It is from my head, chest and back. I look like I have just come out of the shower. 5. intolerance to warm temperature. Any temp over 70, makes me extremely weak and I get the profuse sweating. But my skin is cool to the touch, it is like I am burning up on the inside only.

All the symptoms happened after the surgery 2 years ago. I had already been through menapause 10 years before that. But all the symptoms and the MG and Hypothyroid as well as return of RSD sensations and spasm as well as eczema of the skin and toenails on the RSD foot. I am trying to figure out f this is systemic RSD or another autoimmune disease.

Sorry for the long post but 1 specialist says ask the other specialist and I am getting nowhere.
thanks
kathie

Hello Kathie, I am sorry that you are having such awful symptoms. If you are taking thyroid medication for your hypothyroid condition, perhaps the Rx needs adjusted. Most doctors go by the numbers on your blood test results but how YOU feel on the meds is a better indicator of the correct Rx. Also, have you been checked for vertigo? It is important to rule out other conditions that may be affecting your health. CRPS has so many symptoms that mimic other conditions that it can be difficult to figure out just what is going on with us. CRPS can affect virtually every part of our bodies. I hope you feel better soon.
Regards, Lil

All these symptoms started 2 years ago at the same time. They just started the thyroid medication 1 month ago at a very low dose and there has been no change in symptoms .

If anyone here experience RSD of your internal organs, GI, tinnitus, etc. I would be interested in hearing your symptoms and how you control them.

thanks
kathie

Hi cait
 

These auto immune problems seem to lump together. Mine arn't the same, but I have a number of them as well.
Please get checked for crohns disease. This too is an over reaction of the immune system. It would account for additional pain. sweating, hot and cold and the diarea. Crohns is inflamation in the GI tract. Sometimes over looked by doctors. I am so sorry you have all this going on in your life. I hope there can be more help for you. I wish I knew more to help you. ginnie:hug:

Thanks Ginnie, so sorry you are battling multiple auto immune issues too. There is such overlap, it is hard to figure which is causing what or if it something new. I am thinking about going down to John Hopkins and getting them all assessed. I am going to wait to see how I feel after IVIG (6/17 -6/21)
thanks
kathie

Hi Cait
 

The best to you for the IVIG. I hope it works for you and gives you 100%relief. Think big and big things may happen. Let me know how you do. ginnie

I do have issues with sweating like you described. I also have night sweats. Both attributed to RSD. I took Dibenzyline for it for a while, which worked. I then found the risk of cancer from it, so I stopped taking it.

I have IBS and have had problems with my stomach on and off. Not sure if the flares are medication or RSD related though or just because... lol

I hope you get some answers

I have been doing a lot of research on dysautonomia - dysfunction of the autonomic nervous system. All these symptoms fit. But dysautonomia, can be a component of RSD/CRPS, or a stand-alone disease by itself or it can be cause by another auoimmune disorder termed AAG - Autoimmune Autonomic Ganglionopath or AGID - Autoimmune gastrointestinal dysmotility. I guess I need to find a neuroimmunologist.

kathie

Well, I guess there is no denying the RSD is back. I must have experience at least 20 episode of severe cramping and spasms in both my feet in the last 2 days. Can anyone recommend a neuro at Jefferson University Hospital that specializes in RSD/CRPS? I am already going there for my Myasthenia Gravis and Hasmimotos hypothyroid so I would like to keep it in the same network facility,

thanks
kathie

Need Doctor referral
 

Sorry I forgot to say that I needed the RSD/CRPS specialist recommendation for Jefferson University hospital in Philadelphia, PA.

"Can anyone recommend a neuro at Jefferson University Hospital that specializes in RSD/CRPS? I am already going there for my Myasthenia Gravis and Hasmimotos hypothyroid so I would like to keep it in the same network facility,"

thanks
kathie