2 incidents 9years apart dose this seem that it could be MS.

[penny7777]

I have migraines and have had them since I was 11 years old. 4 years ago started to get increased migraines went to GP they gave me an MRI it showed a pituitary mass 6mm in size touching the ocular nerve. I have a lot of other things going on as well. I also have had most pain on right, but some is on the left too.
Its bone pain achy as hell. My feet get ice cold my hands get ice cold. I have right eye pain, peripheral  vision loss, regular vision *****. I went from needing glasses for reading now to all the time. I have had dental problems. My hip and back lock up and its so painful. There are other symptoms too.
I thought from the beginning it had something to do with the tumor. The 1st neurologist I  went told me we have to get this thing out it's causing  problems. So he wanted me to see his partner. So I did and he said were gona just monitor it for now. I said what, your associate wanted it out  he said it was causing me my problems! He then explained to me that they would have to do a different surgery that would require cutting open my forehead and going in that way, instead of the easy way threw nose and mouth. Then he said that I probably had it since birth I said, no I didn't I had MRI in 1997 and there were no tumor  or anything else. He just ignored what I said and had me make another appointment with his partner who I saw 1st. So went to that appt. and I brought my MRI results from 1997 just in case. I went in and he told me the same thing also saying it was from birth. Then I said, no it was not! I said I have a MRI report of my brain in 1997 and they did that cause I was having alot of back and extremity pain. They thought it might have been MS at that time, but MRI showed nothing. So He got pissed and threw paper back at me and said to his nurse schedule her for next year. I was pissed never went back.
I too have been to a lot of Neurologist and Neurosurgeons and also have been a test subject for treatment of chronic migraines. So the other day I was waiting to get blood and CT scan results and decide to go over my medical records. I came across those notes and reports from 1997 to 1999 and started to read them. What I remember from back then the extreme back pain and arm and leg nerve pain. Apparently it started though with increased migraines. Also every symptom I had back then I have now. I had forgotten all the other things that went along with that. My memory is  also very bad. I have speech problems with migraine, but I am starting to have it when I don't have migraines. I can't gather my thoughts very well and I get very emotional very quick or very angry, that's not normal for me. All these things also happened back in 1997. In both cases they never did a spinal tap.
I emailed my GP and I asked him to look over my medical records for 1997 to 1999. I am also gona insist on a spinal tap to my neurologist.  Majority of the medical professionals back then, made me feel that I was crazy. I feel the same way this time too.
I had a nurosurgen tell me back when I had problums in 1997, say we did a million dollar work up and can't find a thing. Never did the one thing that can dignose it though (spinal tap)! Why don't they just do a spinal tap right away if they suspect MS?

[HVAC]

Make sure if they do a spinal tap they are doing one for MS. They look for something called O-bands. They send it off to special labs. Plus they take a  sample of your blood at the same time they do the spinal tap. If you have o-bands in the CSF but on in the blood serum it points to MS. No test rule MS in or out. They could do a spinal tap on you looking at pressure, etc. and it will do you no good for a MS diagnosis.

Most MS Specialists follow you over years. Rarely will someone go to a MS Specialist and get diagnosed quickly. It happens but for most of us it takes time for a diagnosis. Also many Neurologist do not take the word of other doctors they want to follow you themselves over six months to a year. Normally they do several MRIs comparing them, then blood work to rule out other possibilities, then Evoked potential tests and finally LPs or Spinal Tap. Also know that many people with MS have negative LPs. So you can get a MS LP, Spinal Tap and it may be negative.

Alex

[essdipity]

Hi, Penny. Having read many MRI reports, a bunch of my own and those of others, I have never seen reference to a 'mass' when MS was a possibility. The usual verbiage is hyperintensity, hypointensity, focus or lesion--that kind of term. 'Mass' does sound like a tumor of some sort.

Of course I don't know if that is what you have, or if it is responsible for the symptoms you report. I do think, though, that you have been jerked around a lot by these doctors. You deserve an answer one way or another. So I urge you to keep seeing doctors until one gets to the bottom of things. It's excellent that you have these old reports. Can you go back to the original place and show them their own descriptions?

Also, I concur with Alex--a lumbar puncture is not a definitive test for MS. I wish it were, but there is no such test, it's really a matter of the whole clinical picture.

ess

[essdipity]

PS I see from your profile that you live not so far from Philadelphia. There are bound to be many good neuros there, including MS specialists. To check, go to MScare.org, which lists many MS specialty clinics. Any doctor can call himself or herself an MS specialist, but in reality only a relative few have the knowledge that comes from years of concentration on this $!$%!@ disease.

ess

[SarahL2491]

Some of us spend years and many neuro's before we find our Dx and then don't want it….LOL

My spinal tap was negative but I unfortunately do have MS, so insisting on it might not get you any answers.  ess and Alex have given you some very good advice.

I hope that you find some answers but I don't think MS is your problem, but don't give up, somewhere there is a good neuro who will find an answer.  It took me 4 neuro's, the patience of people on this forum and their advice, and over 15 yrs to get my diagnosis.

Feel free to hang around, we're quite the bunch but quite friendly
Sarah

[penny7777]

I always heard the best way was spinal tap. I know it takes a long time to diagnose, but its hard to be patient when your being treated like your crazy or over reacting. I know the  migraines got really sever this time then they found the pituitary Tumor and it got worse from there on. Got call yesterday about blood results. My CReacProt was 2.13, they said my B12 is borderline low and want me to take b12 1,000 mg everyday. My prot was low, my sodium was also low, my bun was low, and my glucose was low ( no surprise, because  I have hypoglycemia). She said that the neurologist wanted to order 2 more blood test to confirm what she thinks it is. So I hopeing finally after this I will have answers. I want to know so if it is MS how can I proceed from there, as well if it was anything else I could also know how to proceed. Right now I am in a holding position and I know how important it is to find things out early. The earlier in some diseases means possibility of stopping it entirely, slowing the progression, or quality of life. to Essdipity= All of the Nero's have referred to it as pituitary mass, tumor, and lesion lol. Even on the MRI's they use all 3 when referencing It. Its pressing on my optic nerve. thanks for the advice guys. I am just really trying to be pro active and get a solution. Also my vitamin D and TSH is bobbing up and down from normal to low consistently. I am an easy to get along with too. Thanks for your advice again guys!!

[penny7777]

Also Essdipity there is a link between MS and and non Hodgkin's lymphoma and Hodgkin's lymphoma and a connection between non Hodgkin's and Hodgkin's lymphoma to pituitary lymphoma. That's why I though maybe MS involving pituitary tumor pituitary tumor. Also have family history of non Hodgkin's. With my father being one of the one's who had it. Now MS in family history I have to find out about. Hear is one of a bunch of articles I have read.

Hodgkin's Lymphoma and MS: A Genetic Connection


Written by Jeri Burtchell
Published on November 6, 2013



















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The diseases have more than the immune system in common, sharing a genetic risk factor and connection to the Epstein Barr Virus.




Hodkin's and MS

Scientists at the Institute of Cancer Research (ICR) in London have discovered a genetic link between Hodgkin's lymphoma and multiple sclerosis (MS), suggesting that there may be a shared mechanism of action the triggers the two diseases.

Analyzing the genes of more than 12,000 people, the researchers found two new gene variants that increase the risk of developing Hodgkin's lymphoma significantly.


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According to the study, “One of these variants is linked to a gene known as EOMES that helps develop cell-mediated immunity, and is also a known risk factor for MS. This might explain why cases of Hodgkin's lymphoma and MS are found to cluster together in families.”

Read More About Risk Factors for MS »

What Is Hodgkin's Lymphoma?

Hodgkin's lymphoma is a cancer that starts in the white blood cells, or lymphocytes, found in the lymphatic system, which is part of the body’s immune system. Lymph nodes, lymph fluid, and lymph vessels, which transport the fluid throughout the body, all make up the lymphatic system.

Because this system runs throughout the body, Hodgkin's lymphoma can start nearly anywhere. According to the American Cancer Society (ACS), the major sites are the lymph nodes, spleen, thymus, bone marrow, and digestive tract.

Lymphocytes are also thought to play an important role in MS. Normally, lymphocytes defend the body against foreign invaders like viruses and bacteria. In MS, the lymphocytes are misdirected and attack the protective covering of the nerves in the brain and spinal cord.

Read More About Hodgkin's Lymphoma »

In a study conducted in Denmark and published in 2004, researchers followed 11,790 patients with multiple sclerosis and 19,599 of their first-degree relatives and monitored them for the development of Hodgkin's lymphoma.

They concluded that “the observed familial clustering of multiple sclerosis and young-adult-onset Hodgkin's lymphoma is consistent with the hypothesis that the two conditions share environmental and/or constitutional etiologies.” The discovery of a genetic connection between Hodgkin's lymphoma and MS is exciting progress toward understanding both, suggesting the possibility of a mutual trigger.

EBV: A Possible Culprit?

If finding an MS trigger were a “whodunit,” the Epstein Barr virus (EBV), responsible for mononucleosis, would look like a handsome suspect. It is one of the known risk factors for developing Hodgkin's lymphoma and is commonly found in people with MS. EBV and MS appear to relapse together in those who have both.

“Epstein Barr virus is the virus that causes glandular fever (mononucleosis),” explains Cancer Research U.K. on their website. “People who have had glandular fever have an increased risk of Hodgkin's lymphoma afterwards. A study published in December 2011 estimated that almost half of the cases of Hodgkin's lymphoma in the U.K. are related to EBV infection.”

Not all people with Hodgkin's lymphoma or MS have been exposed to EBV, however, suggesting that if the virus is a trigger for either, it’s certainly not the only factor.

Discover How MS and EBV Can Relapse Together »

Researchers are working on the first human trials for a vaccine to fight EBV. Further research is needed to explore the connection between Hodgkin's lymphoma and MS.

The fact that both involve the immune system, share a genetic risk factor, and seem to cluster in families suggests that we are getting closer to solving the mysteries surrounding both diseases and are perhaps one step closer to a cure.

[penny7777]

Pituitary infiltration by non-Hodgkin's lymphoma: a case report
Gonca Tamer,corresponding author1 Ilkay Kartal,1 and Ferihan Aral1

corresponding author

Author information ► Article notes ► Copyright and License information ►

This article has been cited by other articles in PMC.

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Abstract.
Introduction

Pituitary adenomas represent the most frequently observed type of sellar masses; however, the presence of a rapidly growing sellar tumor, diabetes insipidus, ophthalmoplegia and headaches in an older patient strongly suggests metastasis to the pituitary. Since the anterior pituitary has a great reserve capacity, metastasis to the pituitary and pituitary involvement in lymphoma are usually asymptomatic. Whereas diabetes insipidus is the most frequent symptom, patients can present with headaches, ophthalmoplegia and bilateral hemianopsia.

Case presentation

A 70-year-old woman with no previous history of malignancy presented with headaches, right oculomotor nerve palsy and diabetes insipidus. As magnetic resonance imaging revealed a sellar mass involving the pituitary gland and infundibular stalk, which also extended into the right cavernous sinus and sphenoid sinus, the patient underwent an immediate transsphenoidal decompression surgery. Her prolactin was 102.4 ng/ml, whereas her gonadotropic hormone levels were low. A low level of urine osmolality after overnight water deprivation, along with normal plasma osmolality suggested diabetes insipidus. Histological examination revealed that the mass had been the infiltration of a high grade B-cell non-Hodgkin's lymphoma involving respiratory system epithelial cells. Paranasal sinus computed tomography scanning and magnetic resonance imaging of the thorax and abdomen were performed. Since magnetic resonance imaging did not reveal any abnormality, after paranasal sinus computed tomography was performed, we concluded that the primary lymphoma originated from the sphenoid sinus and infiltrated the pituitary. Chemotherapy and radiotherapy to the sellar area were planned, but the patient died and her family did not permit an autopsy.


Conclusion

Lymphoma infiltration to the pituitary is difficult to differentiate from pituitary adenoma, meningioma and other sellar lesions. To plan the treatment of lymphoma infiltration of the pituitary gland, it must be differentiated from other sellar lesions.

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Introduction.

The most frequent tumor of the pituitary gland is pituitary adenoma, but craniopharyngioma, Rathke cleft cyst, dermoid, epidermoid germinoma, metastasis, meningioma, arachnoid cyst, sarcoidosis, tuberculosis, histiocytosis, lymphocytic hypophysitis, schwannoma, infundibular glioma, cavernous carotid artery aneurysm and pituitary involvement in lymphoma or leukemia are included in the differential diagnosis of sellar and parasellar diseases [1,2].

Primary sellar lymphoma is a very rare disease accompanied by acquired immunodeficiency syndromes. The mean age of immunocompetent patients with sellar lymphoma is 60 to 70 years old. Sellar lymphoma is an exceedingly rare disease and is asymptomatic in most cases. Since the pituitary gland has a great reserve capacity, pituitary involvement in lymphoma also appears to be asymptomatic in most cases. In many cases, diabetes insipidus (DI) seems to be the most common clinical presentation as the posterior lobe of the pituitary is supplied with blood directly from the systemic circulation while the anterior lobe is not. In patients with lymphoma, it is essential to differentiate pituitary involvement in lymphoma from benign lesions for the appropriate therapeutic plan. Local therapy aiming at symptom relief may be beneficial [1-3].

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Case presentation.

A 70-year-old woman presented with headache, weakness, fatigue, right palpebral ptosis and diplopia. Magnetic resonance imaging (MRI) of the sella revealed a sellar mass involving the pituitary gland and infundibular stalk, which also extended into the right cavernous sinus and the sphenoid sinus. The neurologists demonstrated infiltrations of the right II, III, IV, V and VI cranial nerves (figure ​(figure1,1, figure ​figure22 and figure ​figure33).

Figure 1

Figure 1

Precontrast coronal pituitary magnetic resonance imaging T1W1.

Figure 2

Figure 2

Sagittal pituitary magnetic resonance imaging T1W1 with contrast agent applied.

Figure 3

Figure 3

Coronal pituitary magnetic resonance imaging T2W1 with contrast agent applied.

A week after occurrence of right palpebral ptosis, the patient received immediate transsphenoidal decompression surgery. The histological examination revealed that the mass was the infiltration of a high-grade B-cell non-Hodgkin's lymphoma involving respiratory system epithelial cells.